Jamesie beats the tumor

Relative

2012-02-25T21:57:00.005-06:00

Though it's often frowned upon, I've often applied the concept of relativity to my day to day life. It's intuitive, after all. I make x dollars. You are a member of the 1%. While you're certainly much richer than I am, we're both doing well compared to some. This principle is often a useful source of perspective. Applied correctly, it makes you appreciate what you have and value the things you do have. All too I've thought that we- myself no less than others- suffer from an ill-advised application of this principle. The tendency is always to notice what you lack, so often than you lose sight of what you have. It's a trite message and one I've always thought is overdone around Thanksgiving and Christmas. In the right circumstances, I think some healthy jealousy is quite motivating. There's no reason to go to do well in school or work hard if you don't want better.

Lately I've felt a lot of the wrong kind of jealousy. I catch myself watching other people's children's grow in a steady progression on facebook, while I trudge along with the same pictures, James frozen forever in time. They're learning to walk, talk, and making delightful little videos. I've blocked a few feeds. Just like James would be doing if he were here. I am jealous of the ease that seems to bless them, the casual way with which they go about their days, blissfully unaware of words like rhabdoid. Mercifully ignorant of the economics of cemetery plots and monuments. As the season turns and we drift farther and farther away from the long summer of James' illness, the fixed nature of his passing becomes even more unavoidable.

It's not that I can't, or don't want, to talk to people about their kids. Quite the opposite. I'm always pleased when people decide to have kids and want to talk about them. James was the best thing that ever happened to me, and the ending has nothing to do with that. It's great to talk to people and see how they're doing and their kids are doing. If anything, I get the impression people who know about James are less comfortable talking about their kids with me, perhaps because they fear that I won't take it well. That's not true. (Though if you make direct comparisons, as a few people have done, between your child's trip to the ER for a sinus infection and my son's terminal brain cancer we might have a problem.) I particularly enjoy talking about James. To do otherwise neglects the best part of his life, the part that had nothing to do with cancer and everything to do with his bright smile. It is important not to let the memories of James' death obscure the more important experience of his life.

Since he died, I've met a few people who didn't know. When asked if I have children, I try to give the same answer "I had a son, but he passed away." I tried saying "I don't have children" once or twice, with horrific results, including one person at a lawyer function who commented that I'd clearly looked at kids, looked at my job, and decided kids were too much of a commitment. "I have a son" is equally unhelpful, because there are no questions about that son I can answer in the present tense. So I've elected to go with the truth, because I think it's important to acknowledge and celebrate him.

So it's not a particular sense of jealousy I feel towards the individuals. I'd never wish what happened to James on any family. It's a more generalized, relative sense of jealously for the life I'm not living. I'm missing a hypothetical. My life would be more like X if James were alive. If James were alive, X would be happening. Relative to my current situation, all of these things feel like an improvement, and I feel worse because of it. I remember feeling this way in the hospital, jumping right through the ER waiting room on each of our return trips from home, jealous of all the families waiting for care, because it meant their children were in no danger of dying before their wait ended. It's a frustrating, useless feeling, but it's there.

I try and sometimes succeed in telling myself that there's nothing to compare to. James is James, and I wouldn't trade him for anything. The relativity I should focus on isn't on the life I'm not living but on the life I did- how blessed I was to meet my son and to know him for the eight months that I did. Most of the time, I do. Sometimes though, it's hard to look past the easier analogies. Maybe next year, when I notice the seasons less.

Empathy

2012-02-19T17:05:00.005-06:00

Today I was watching Parenthood. It's one of those shows that's good enough to make the DVR rotation, but not so good that you feel an obligation to watch it quickly. Weekend DVR material, the kind of thing you leave on in the background while you sort the laundry. I have a weird affinity for ensemble family dramas. Anyway, about halfway through the show there's a scene where the autistic son of one couple invites the disabled son of another over. Both parents are excited, there's an exchange of information, and the mother of the disabled boy says something along the lines of "We're so glad he has a friend. He's never had a friend before." I couldn't say exactly why, but for some reason this line made me cry.

I virtually never used to cry. I long ago mastered the male ethos of keeping it together, pushing the feelings down, and moving on to the next action item. It's not that hard once you get the hang of it really. The habit is much harder to pick back up once you've broken it though. I've had streaks of years without tears. Not anymore. I'm lucky if I hit hours now.

When something like this happens, you become more aware. You notice the thin lines and forced cheerfulness in a stranger's face when the word "cancer" slips off their tongue, always just casual enough that it won't end the conversation. You recognize the strain in their voice, and know that the "handling it well" that they're speaking of is really a polite euphemism for walking upright rather than falling to the ground and bawling their eyes out. I never noticed all that before, because I did not know. It's like I've been exposed to the vast sadness at the core of things, and cannot look past it to the facade. It's not a completely bad thing. I do more for people. I'm more empathetic. I'm probably a better person though frankly I could have done without the self-improvement.

So I find myself crying at inopportune moments, pausing between folding undershirts to cry at an actor's honestly not all that convincing delivery on a recorded television show. Like an idiot, I'm now journeying mentally through this fictional person and her lonely son's battle with spinal bifida. I am imparting far, far too much pathos to the scene. I'm drifting from stoic to that obnoxious person in the movie theater.

At the heart of it of course, is that I miss him. I miss his smile and his laugh. I miss his probing eyes and his little fingers wrapped around mine. I miss his smell, trapped, but fading, in the clothes resting idle in his drawers. I miss him all the time.

Thank you for your continued thoughts and prayers.

Happy Valentine's

2012-02-14T19:54:00.005-06:00

This is James' one and only Valentine. It's my all time favorite Valentine's Day card. James contributed his feet, which are amazing. Obviously. I keep it in my office, along with an ever stationary array of pictures, plucked in time from a moment when I looked forward to more Valentine's day James gifts. I'm glad Kara made this- I'm glad James got to see all the holidays, even if he was young. We were very blessed.

I hope you all had a lovely day. It's not that bad, once you get past all the red. Thank you for all your continued thoughts and prayers.

Circular

2012-02-11T14:16:00.003-06:00

I've posted this image before, and looked at it hundreds of times more than that. It's James at the arboretum, munching. I always thought it was funny because of how warily he seems to be addressing the camera. I miss that.

Like this picture, I've noticed often lately that things seem to be on repeat. Perusing through old entries I noticed that I used some of the same words: "derailed" twice in a month. Derailed indeed. Many of the same feelings keep repeating, being resurrected, buried, and resurrected again. The longer this process goes the more I am surprised by the many twists and turns it takes. The path is never straight, pausing time and again to circle back in on itself. It reminds me more of a river than a highway, complete with oxbows and dead ends. There's no certainty about quite where you'll end up.

When I was young, my Grandfather, also James, used to take me fishing on the Red River in Louisiana. A tributary of the Mississippi River, it snakes its way leisurely from the Panhandle of Texas generally southeast until it meets the Mississippi. We particularly fished the little oxbow lakes along its way, little abandoned offshoots that never quite made it, experiments before the river took another course or overcame the obstacle in its way. It's all very vestigial. I sometimes feel that way now, running down dead ends only to come out and hunt for more.

There were no circles and abandoned paths in the grief I experienced before James died. When my grandparents died or someone similar died there was a sense of finality. Shock, yes, certainly for a while, but it passes. It was expected after all, if not when it happened then eventually. Anger, denial, bargaining, acceptance. It's the last one that causes trouble with the death of a child. You can accept that your parent dies- they had their time, their moments, their joy. It is much more difficult to accept that your child is dead. On a visceral level, I do not accept James' death. I acknowledge it certainly, but I cannot yet accept it. I cannot accept that it was his time, that is was right, that it happened for "a reason" as some people sometimes say, a well meaning if callous phrase.

So I keep circling round and round that. I can acknowledge things, even good things that have happened since James died. I've written about them here. But the fact of his death can still be incapacitating. It stands as a violation of the natural order. And so I keep circling. Round and round the little pockets of grief, cycling through all the stages in an hour or a month. People often tell me to embrace it, to give it time and to work through it, but sometimes it's hard to do that, especially when I feel like I've been there before. Sometimes it feels like an admission of defeat to pause, retreat, and recover the ground I've already walked through, circling back over and over again. But I don't know what else to do.

I know part of it is just accepting that there is no "acceptance" I'm likely to stumble upon. I'm not going to wake up one day and decide "Huh, well I guess it's ok my son died. That wasn't that bad." Because it was that bad. I think a better, more reasonable goal might be hoping I can accept that I won't be accepting it, but that I might accept that there's not a timeline, not an easy answer, and that I'm never going to "accept" what happened- that I'm not going to come to the apparently zen state described in the pamphlets in which I'm sublimely "at peace" with everything. A more achievable goal might be that I can accept that I will live with it. I don't know what that looks like, but I'm curious enough to keep looking. So I'll keep circling until the path works itself out. I'd rather do that than rush to a goal I'm not sure of.

Thank you for your continued thoughts and prayers.

Rhythm

2012-02-04T16:49:00.005-06:00

Life has a natural sense of forward progress. There's a natural rhythm to it. You're born. You grow up, mingle with other kids and scrape your knees. You play games and dream of a day when you can spend one more hour exploring the creek, the woods, or whatever it might be. You go to school and grudgingly learn from your teachers, pent-up energy bursting at the seams in the desk. Reading, writing, and arithmetic. Next to junior high and high school, all awkward bumbling and stylized socialization. Then college, laid back, philosophical, and free to do follow mood strikes you. You meet a girl with a similar bent and similar goals and you marry. Get a job, work hard, have a family.

With a few deviations, before James died my life was on course. I stumbled, sometimes badly, but I usually ended up in the right place one way or another. Good job, nice house, nice car. A beautiful little boy. The future was bright. Then James got sick, and the future died with him. I'm sure it's different for people who have more kids. If you lose one you have to keep going, you have a reason to. When you lose your only child you lose all that comes with having a family. Grandchildren, parenting, all the good reasons you had. With James went so many things. My first name is James, and my father and his father's, and so forth and so on. That's over now, two hundred years and it ends with me. James' furniture, neat and unused in his room, an empty nursery that I don't know what to do with. And so nothing happens, and the nursery remains, stocked and empty. People always bond by talking about their kids, it's a good source of common material. But I have nothing to contribute, I never had a kid. I had a baby and that baby died. My parenting stories begin and end with diapers and crawling. There's no transition to toddler. I usually say nothing. Nothing kills a good conversation like throwing your tragedy into the mix. It's not that I don't like to talk about James, I do. It's great to talk about him, and I love to hear what people thought of him. I just can't compare him to anyone else.

I'm out of sync with the life I planned. It vanished with James, and in its place is something much less appealing. Grief, loss, and all the emotions that come with it. Since we found out Kara was pregnant, James was my purpose. I think that's true of anyone with kids. You might get distracted, but when it comes down to it that's what you're doing.

My brother got married this weekend. It was lovely, if lengthy as Catholic weddings tend to be. An old downtown church full of architectural detail, like the Church I married in, but mine was Methodist instead of Catholic. The reception was enjoyable, an old theater in downtown Houston, complete with an open bar and an antique finish. Very roaring 20s. It was good to see my family and to celebrate, but I remember watching them dance, watching my cousin- 2 weeks older than James- trot down the aisle bearing the ring and feeling out of step. Out of step with where my life was supposed to be, with what I was supposed to accomplish by year 28. I imagined many tragedies, but this was never one of them. There was no how to manual, no contingency plan.

Part of this feeling is the loss of any perceived sense of control I had over my life. Although it's often an illusion, the idea that you're not just bobbing along in the waves offers a certain comfort. But that's silly. You don't control the world, and as recent events have proved to me conclusively, you often can't even control the things most important to you. I've come to the conclusion that the only thing you can really do is control how you respond to the things that happen to you. You can't control the waves, but that doesn't mean you have to drown.

That's how I feel about James sometimes. My life has been derailed, and I can either choose to drown with the vision of life I had or see what's on the other side. I'll admit I don't really know what that looks like yet. The rhythm is off, I don't expect to get back on track. I've gotten about as far as deciding that I'm interested in finding out what the new path looks like. The rest? Well, I'm not planning that far ahead anymore.

Thank all of you for your continued thoughts and prayers.

1 Million

2012-01-31T19:51:00.003-06:00

At some point over the weekend, this blog hit its 1 millionth page view. That's really something.

It's a bittersweet achievement. Obviously, my life would be better if this blog did not exist. If this blog did not exist, that would have meant that no tumor existed for James to beat. It would mean he never got sick, that I never wrote a word about it, and that I could see him right now if I wanted to. 15 months and 2 days old, a bouncing baby transitioning fully into toddler mode, prancing down the halls and testing the baby proofing around the house. Bumping into the plastic edges Kara wrapped around the hard edges of the furniture and the sharp corners of the fireplace. Struggling against the protectors she put in each and every outlet. We took them off after he died, and the plastic pads left just a bit of residue on the painted brick of the fireplace, like the sticky film you can't quite get off when you peel a sticker off your car window. I keep expecting it to fade, and can't decide if I really want it to or not. I wanted to see him walk so badly that the lingering refuse of our preparations can almost trick me into thinking I did. Perhaps, I muse, he's just off playing in another room, or playing on the toy slide I bought at the garage sale down the street. It was too big to fit in the car so I dragged it down the street to the house, too lazy (and too incompetent) to disassemble it and pack it in. But the slide isn't there anymore either.

Kara started this blog. I still remember when. It was our second day in the PICU. We'd just learned about James' tumor, but didn't know what kind of tumor it was yet. Rhabdoid was an unproven hypothesis. She didn't tell me about it, she just started it with no entries. The lead photo was a picture of James from the zoo, perched on an old jeep, his hands banging on the spare tire mounted on the hood. It was from our second and last trip to the zoo. I was not in a good place that day, the world was spinning. I remember liking the title she chose of James beats the tumor, because it made me feel more like we had somewhere to go, somewhere that was not the cramped PICU room. I wrote the first entry on no sleep and with no plot, walking down the timeline of the hospital so far, not sure what else to do. I called it Day 1, because it felt like all the days before had been irrelevant. It still does. If Kara had not started the blog I never would have done something similar. In fact, I probably would never have said anything at all about any of this. I'm not big on sharing, but I took some kind of comfort in the anonymity of the blog. Once I started writing it felt good to put all of that pain somewhere other than me, innocuous words glowing softly in the light of a laptop screen instead of simmering in my head, festering into doomsday scenarios.

Though I didn't know it when I wrote that entry, I'd write in the blog every day between then and the day of James' funeral. In a way, I'm glad I didn't know it would barely be three weeks later. I don't think I could've handled knowing. I wrote late, after the doctors finished their interminable and intermittent rounds, relying entirely on Children's spotty wireless connection to upload my unedited thoughts. Going through them now I notice that typos abound. Kara wrote too, with a style completely her own. As I've said before, Kara and I are opposites. I looked forward to her posts, because I always felt better when I read them. I still do. Though you never really sleep on a schedule in the hospital, writing became my way to wind down and end the day. Once I wrote it, I could clean the slate and start filling it up with thoughts for the next day. It was a healthy catharsis. I'm not glad that this blog exists, but I am grateful. I needed it.

After he died, it became a place to vent and reflect. To talk about the grief of losing him and how that felt. We wrote less, and the subjects became grimmer. Graveyards and funeral homes replaced Disney and babies. A place to vent about all that was and never will be. Still, you kept coming. Thank you for that.

I do not know where you all came from. I do not know how all of you got here. The e-mails and comments indicate you are international and local, people I know and people from places I've never been. Scotland, Australia, Argentina, Canada, Puerto Rico, and more; scores of states that we have no ties to. I don't know who you are but I'm glad you found James. It has been overwhelming to see the feelings he inspires in other people. We have been blessed. With James gone, the way people feel about him and the way they remember him has become very important, in many ways, it's his legacy. I've heard the phrase that someone's death was "not in vain." I don't believe that when it comes to children. Children should not die. Every death is a waste of a life over before it began. I do believe that what you do with someone's death is important. Their death might always be in vain, but that does not mean that your response must be. They don't have to die for something for you to do something about it.

Thanks to this blog we've been able to do a lot of things to keep James' memory alive, and hopefully one day to help ensure that there are less memories made like his. We've raised $25,000 for James' fund and rhabdoid research. We were able to get Jamie the Giraffe named in his honor, and in doing so were fortunate enough that the person who won the family trip for picking the name chose to give it to Make a Wish Foundation. It's been humbling to see the things that people have done for James. Thank you.

I try- but do not always succeed- to thank you whenever I write here for your thoughts and prayers. They mean a lot. No one gets through something like this without a lot of support, and we have been very fortunate to have a lot of support. I have never felt like no one cared. So thank you for coming and thinking about us. Thank you for getting to know James.

Guilt

2012-01-26T20:38:00.004-06:00

Loss works a painful hindsight on your actions. You become acutely aware of all the actions you could have taken, but did not. With the perfect clarity of your present knowledge, unencumbered by the demands of actually acting, you suddenly become aware of all of these contingencies that in the moment you never even thought of. I find myself going over things again and again, racking my mind for something, anything that I could have done differently.

There's a thousand thoughts about how he got sick. Did I expose him to something, when I held him in my lap with my phone in my pocket, did it give him cancer? Should I have let them do the catscan when he was 4 months old? James' tumor was a random one. Some ATRTs are the product of a mutation throughout all the cells of the body, an innate flaw that lurks patiently in DNA, until tripped by some random event or another. James wasn't that. The only sick cells in his body were the tumor cells. He was perfect in every way otherwise, just as God made him. So I keep asking myself what did it? What tripped that first cell into an ATRT cancer cell, especially one like James' ATRT? A furiously aggressive tumor, even by ATRT standards, it burned through his body and killed him in less than the time he was supposed to have to recover from his craniotomy. That one illusory success we enjoyed throughout our whole stay at the hospital. This is all foolish of course. He didn't get cancer from a catscan, a phone, or something in the water- if anything that catscan helped us because we wound up having a benchmark when James first got to the hospital, so the doctors knew better than to treat him for something else. You hear nightmare stories of parents in and out of the hospital for months without an ATRT diagnosis, their children suffering. We found out in just over a week after James got sick. Nothing caused James' tumor that I or anyone else did. It just was. Somehow knowing that just doesn't help.

Then there's the guilt about when he was sick. When he first got sick I didn't really take it seriously. He's a sick baby, babies get sick. He's throwing up, what's another summer bug. I just didn't worry about it. We went to the pediatricians and I patiently waited for them to confirm my suspicions, toss some zofran our way and send us on our way. I never pushed them to do more. I never thought- hey, could this be serious? Even when we went to Medical City Children's, I remained supremely unconcerned. Here's where the first real guilt creeps in. Shouldn't we have gone to Children's? They found his tumor there. We only saw a doctor right before we left at Medical city and they barely even examined James. They just gave him fluids and got hacked when we made them stop trying to give him an IV after they screwed it the first few attempts. They had an IV team at Children's that did it in one take. I should have been more aggressive, I tell myself. I should've gone somewhere else, found the diligent and sharp intern (never believe people who tell you not to go to teaching hospitals) who first noticed James' symptoms at Children's. I should have pushed for more treatment faster. I should have made them find it, instead of sending us home with James still sick. He deserved a better father than that. Still, I remember being by and large supremely unconcerned, if annoyed by the care we received. He's throwing up, I remember thinking to myself, we'll get fluids, medicine, and life will go on. It's not like he's dying. I probably even made some stupid jokes. I don't remember.

Even on the way to Children's, stopping by the house to pick up clothes and toys for a quick one night stay I remember my worst case scenario having evolved from the weekend to that Wednesday from stomach bug to stomach parasite, as WebMD warned me. WebMD did not suggest brain cancer. Still, I assumed a night of observation would translate into a quick solution and an easy out. Just need to pick out the right med. If anything, I thought I was overpacking, with at least half his toys and about a week's worth of clothes. I remember talking to someone (can't remember who- I remember very little about that day before the hospital) at work that day about James being sick and them asking if it was serious, and my lackadaisical response of no. How could it be serious? He was an eight month old. What happens to eight month olds? My mother asked me if I wanted her to come down and I said no, he's fine. And fool that I was, I believed it. I feel so guilty about that. He must have been in so much pain and here I am, his father, brushing it off as something not that serious, a bump in the road and a one off night at the hospital. I feel so guilty about that, about how "ok" I was until the differential started narrowing. I know we caught it "early" relative to a lot of people, that we were diligent with 4 pediatrician visits and 1 ER visit in a week before getting admitted. Still, I feel like I could have done more. Should have done more.

When he was sick, there's still more guilt. Not pushing the doctors hard enough to get another MRI after his post-op MRI, contenting myself with feeble catscans and still less useful medicines. I worry about how much pain he was in, how little medicine we gave him. My poor little boy. I feel guilty about each and every night I went home to sleep. I had barely three weeks left to spend with him, and I spent more than one night away from his side. I would give anything for just one night in the PICU again, with James stubbornly refusing to sleep, pawing at his leads and his IVs. I'd kill to try to spend another night on the worst of those PICU beds, the uneven vinyl pullout with less padding than my cheapest sleeping bag, barely long enough lay down on, more comfortable your leg hanging off it. I feel so guilty about that. About the Rangers game we went to, the meals out we had. Every moment I spent away from him. I feel guilty about the end. Did I give him the right medicine? Too much? I followed the directions but what if I screwed it up? What if I made it faster.

Above all, I feel guilty about the time I missed with him while he was still here. There are so many things I wish I'd done that I thought I'd have time to later. So many experiences lost. I really don't have words for that. I could lie to you, but why bother? I know better. I assumed I'd have years to learn to be a better parent, and I just didn't get there.

I've read enough on grief to know at this point that guilt is "natural" and part of the healing process, that I'm projecting and deflecting, attempting to avoid the reality that there is no one to blame, no one to be angry at, and no one to seek satisfaction from. As always, academic understanding is useless. I know I'm not going to die on a roller coaster, but my body often disagrees. The guilt I feel about James is a bit like that. I know it won't help anything, I know it can't. I know it won't help me, but there it is, whispering in my ear reminding me of all I could have done. So I just feel it. The silly thing is that nothing I could have done would have mattered. If they'd found James' tumor that weekend, he'd still be dead. If I'd spent every night with him, he'd still be dead. Nothing I or anyone could have done would have made a difference. But I was his father, his protector- I was supposed to be able to do things like that for him. Sometimes I feel like guilt helps me remember that, helps me connect to him in an odd way. It's a link of responsibility. I miss that.

Thank all of you for your continued thoughts and prayers.

Association

2012-01-22T21:59:00.004-06:00

Last week should have been a good week. A short week arriving on the heels of a three day weekend, a brief interruption before yet another weekend. Despite the fact that it's January, Texas in its infinite whimsy provided us with a steady diet of medium sunny days, springlike almost. If you wanted to grill last weekend or pretty much any day this week, you could have. Memorial day in january. There's a lot to love abut living somewhere where you can comfortably wear sandals in the dead of winter.

Despite all that, I felt off this week. Somewhere between the dawn of the New Year and James' six month little details began to spring to mind. Last year I calendared his birthday (along with everyone in my family, because I'm not very good at that otherwise). No need this year, and google calendar agrees. I didn't calendar anyone this year, blank places where reminders ought to be. Apologies in advance. The changing of the dates reminds me this is a year James will never see, that will come and go without him entirely, just as he never lived through a full calendar year, stealing months in 2010 and 2011. He never lived in any August or September. All of these little details run together, odds and ends of grief.

For me, grief is a weirdly free-associative kind of event. It's so raw that I can't just sit down and think "my son is dead" is for hours at a time. Instead, I find myself getting there through more circular means. The title of an article on a magazine about never realizing your full potential. Children's potential. Unfulfilled potential. Dead children. My dead child. It's always there, simmering beneath the surface, waiting for an opportunity. I'd rather have that than not have it there, but some weeks, like last week, it comes up more easily. In an article about movies coming out this year I discover to my horror that something called "Abraham Lincoln: Vampire Hunter" exists and is coming to multiplexes near you soon. I am reminded that Lincoln lost several children. Eddie, who died at four, and his favorite, Willie, who died at 11 roughly a year into his presidency. Putting my long-neglected history major to good use, I locate and read a few scholarly articles on Abraham and Willie, and how he responded to the loss. Four days with no official correspondence, visits to the cemetery. His wife Mary began to go mad, a process she'd at least legally succeed at in about a decade's time. Digging a little deeper, I found original contemporary newspaper articles which- in stark contrast to how such an event would be covered today- spent relatively little print on the subject, focusing the week's news on Jefferson Davis' inauguration as the "Rebel President" that same week. These are the kind of things I've been doing lately. It all comes back to James.

So this week felt off, everything percolating without any real purpose. I sometimes feel like its only as we get farther away from James' death that the long term implications, and the full force of grief, begin to set in. Immediately following James' death the pain was too immense and immediate for comprehension, an all-consuming thing. It was however, inchoate, something beyond understanding by virtue of its immensity. Only now, with time passing and James still gone, do things begin to fall into context. The changing year is part of that, the rapidly accumulating experiences in which James cannot play a direct role. It sometimes feels like I'm waking up to that reality, slowly recognizing it. So now I'm just trying to figure out a process. I doubt that will come quick. I'm just along for the ride.

Thank all of you for your continued thoughts and prayers, and for the very sweet messages we received on the 16th.

6 months ago and Lasts

2012-01-16T13:09:00.000-06:00

I can't believe that I last held my baby 6 months ago. 6 months ago today was the last time I got to be "Mommy". It was the last time I rocked him, the last time I sang to him, the last time I kissed his face and still felt the warmth from his cheeks. Those are the things I miss the most.

So many "lasts". In my last post, I wrote about how I typically keep it together in front of people. Apparently, when I write something on the blog, I then become the opposite! This week I have been a weepy mess. I have sobbed everyday, in all sorts of awkward situations. The times that I haven't actually started crying, I have bit my cheek so hard it bled to keep it together. (I know most of you will say let it out, but there are times when it is completely inappropriate for me to cry- like at work! So I'm trying to come up with a better way than to make myself bleed).

This is just a hard weekend for me. It symbolizes a bunch of different things over the last year, with the culmination point being that James has been gone 6 months. It's crazy how much can change in 6 months. My sweet friends and I got together Friday night with their husbands and kids. All the kids were lined up watching "Curious George" while we ate. They were so adorable. But in that moment, I wondered where James would have sat. Or would he have sat still to watch the movie at all? These were all his friends from playgroup. They have gotten so big! (This isn't my first time to see them. It was just my first time to see them all together as a group). They are talking more, walking faster, playing with bigger toys and their personalities are shining through. And so watching them makes me wonder even more what my life should be like.

Sometimes it's hard for me to even identify as a mother anymore. I see my friends who are parenting 1, 2 3 year olds and I have no concept of that. I have no earthly idea what its like to even parent a toddler. Just like they have no idea what it's like to hold their child as they take their last breath. Sometimes I feel like I don't know what my identity is anymore. None of the "roles" seem to fit completely. I don't see myself as a Mother. I don't identify with being a student, even though I am one. I don't picture myself as a professor, but in 2 days I will be. So what is my identity? Right now it feels like I'm just floating by...an hour as this....2 hours as that. But none of them really sticking.

I still feel really guilty. I'm working on not feeling that all of the time, but it's still there. I read an article probably a month or two ago about pediatricians not dispensing enough pain medication to infants. The study suggested that since infants can't tell you if they are in pain, doctors err on the side on not over medicating them. I got to thinking about how James was discharged from the hospital 3 days after major brain surgery. They sent us home with liquid pain medication that he subsequently continued to throw up. So during those times, he really wasn't on pain medication. His head must have been hurting- it had just been cut open 3 days before. Was he in terrible pain and I just didn't know it? Why did I not insist that he be sent home on IV pain meds? It continues to haunt me that he could have been hurting and I didn't do enough. My therapist and I have gone over and over those days, and he assures me that I've done everything that I knew that I could do at the time. (Yes, for those of you wondering, I do see a therapist to try to help me with these issues).

Some days I still feel very overwhelmed. Sometimes it's overwhelmed in a good way because there are so many lovely people in the world who are just kind-hearted people. I'm overwhelmed that people care enough about me to check on me, even when I don't respond. I'm overwhelmed because I understand why some of you would care about James- because he was the most beautiful baby in the world, but to care so much about me is overwhelming.

I'm trying to figure out a balance between honoring James with the life I have left to live and feeling guilty that this new life is drastically different because he isn't here anymore. Does that make sense? I feel like by trying to go to medical school I'm honoring him. But at the same time, I wouldn't be trying to go to med school if he was still alive. I know it's not healthy to stay home and sulk in bed- and so doing so doesn't honor him. But if he were alive I wouldn't be meeting friends for drinks after work. I've created my own Catch-22 I guess.

Ok, so much for my rambling thoughts. I've added a photo shoot of James from last January. In the middle of it Maggie decided that she need to protect James from the camera. My camera is sitting in the closet, and hasn't been touched since he died. I guess I decided that there was no point for pictures anymore. Anyway, I hope you enjoy the pictures of my precious boy.

Monday the 16th

2012-01-15T21:48:00.003-06:00

Here is James in one of his signature poses, back arched, legs akimbo. He loved squirming.

Friday the 13th came early this year. More troubling is Monday the 16th, our half-year anniversary. Half a year gone and it seems as though we’re still spending time spinning our wheels in the mud, stuck in James’ room that last day doling out shots of morphine to him on the hour, his nutrition long since discontinued as unnecessary. There’s really no sense in eating right before you die, and certainly not in intravenous form. We went home with three or four bags- enough for a week. Each one cost something like $5,000 dollars, or was it $15,000? The costs were all so astronomical that they’re almost nonsensical. I never bothered to review the itemized list of services. Why bother? None of them worked. Each bag perfectly calibrated for James. We thought we’d at least get through a week. We barely got three days. Afterwards the unused bags lingered in the refrigerator- the one thing missed by the hospice nurse on their sweep. I tossed them, furious they'd missed anything. When James had his surgery less than three weeks before they thought the 18th would be a fine day to start his chemo. No one thought we wouldn’t even get to that day.

We thought he was gone a few times before it happened, but each time he came roaring back to us after a minute or two, refusing to die. He had such a fierce spirit, even at the end. It broke my heart. We kept telling him it was ok to die, all right to go, that we loved him always and we’d be there as soon as we could. When it finally happened it was different. You just knew.

I suppose you always do. I wasn’t with my Grandfather or my Grandmother when they died. I didn’t make it back to Louisiana in time for my Grandfather, and our family didn’t make it to the hospital in time for my Grandma. The nurse called us that morning when things got bad, but between the hotel and the 15 minutes to the hospital she died. I got another call from the nurse in the parking lot asking where we were. I said we were pulling in. He didn’t say anything. I knew why he’d called, but I didn’t say anything either. With each, I arrived only after death and missed the passing, and with each I was confident they’d led a life worth living, that the end of that life represented the culmination of something great and worthy. I didn’t feel any of that when James died. His passing was horrible, a desperate moment seared in my mind that plays back over and over again on the bad days. There was no end here of a worthy life, just the premature conclusion of one that never really got going. James was such an active, brilliant boy. Always so engaged wit the world around him. Anything but boring. He didn’t even like naps- as miserable as that could be. I had so many dreams for the boy and the man he would become. We had so much left to do together, football games, bike riding, fishing in the summers. He had so many things left to do on his own too, high school, college, marriage, a family of his own. How desperately I wanted to know him. There is a pervading sense of wrongness about the whole thing. It just shouldn’t be this way.

But it is. As horrible as it was, it is. All of those dreams remain just that, alternative realities that will never play out. I try to remind myself of all the good. In situations like this, you really only have a few options. You either break down and become defined solely by what happened, or you try to do something with it. There’s no just avoiding it- you either do something with it or you lose it. I’m trying the second option. I try to remind myself of all the wonderful things about James. James graced our lives in many ways, and I am forever changed. I’m not going to get “over” this. I’m just going to be a different person- that’s really all there is to it. What remains unanswered is exactly how its all going to sort out. The jury's out on that. I do know that above all, I am grateful for the time we had with James. He is irreplaceable. And no matter how horrific those last few hours were, I wouldn’t change anything about James or our time with James but the ending. We extraordinarily blessed to have him as our son. We remain so.

Thank all of you for your thoughts and prayers over the last several months. It means a lot.

Momentum

2012-01-12T21:47:00.004-06:00

This was the background picture on my phone for the longest time. It's James with his sunglasses on before we went to the Saint Patrick's Day Parade last year in his first outfit of the day. I always thought he looked really cool.

Somewhere scattered in the cobwebs of my brain remain the concepts of momentum and inertia. If my faulty High-School Physics (the high point of my physics education) recollection serves me right, together the two have to do with the energy needed to affect movement. Inertia is roughly how much energy you need to get something going, while momentum is the force it carries as it goes. It's quite possible I'm wrong. Math and science, while interesting, were never "core competencies" of mine. Lazy child that I was, I always migrated towards the subjects that came easiest to me, English, History, and all things verbal. I can still remember the disappointment I felt when we graduated to junior high, when reading, and thus another easy grade, lost its place on the report card. Pre-Algebra proved a poor substitute.

Since James died, I've felt like what I've needed to do was gain momentum. In the first few days after he died we were going non-stop, planning the funeral, picking out a grave, attending to all the little thing that needed to happen, too terrified to pause and reflect upon what had happened. Afterwards, in the first few weeks that followed time and life morphed into some indiscriminate blur, the pain too raw and too tense for processing or understanding. Everything dissolved once that initial momentum faded away, when family and friends left for the lives they put on pause to get us through those first few days. Sometimes I think what happened to us is closer to hitting the stop button than the pause button, the film ready to be ejected, not resumed.

The act of showering became an achievement, one I allowed myself only so that I could put on clothes and drive out to my son's grave. I remember closing my eyes and thinking to myself "You have to get up. You can't do this all day. Just get up and drive." I'm sure I did more than that. I know I brought books with me. I finished several. The plots and titles are vague, as if I didn't keep them long enough in my short term memory to form any lasting impressions of the characters or the plot. The initial momentum of those first few days faded into an almost total inertia, drifting along responding only to those problems that demanded immediate attention.

Since then, things gradually improved, but maintaining momentum is not easy. The old physics concepts of equal force and what not evaporate. Small things disrupt the flow, derail the day. Leaves gathering in his swing outside, left long enough that they've begun to crumble, brown and dead. There's no reason to clean them off anymore as we once did, careful to make sure James wouldn't get dirty. Cleaning out the trunk of my car (years overdue) I discover packages sent home with us by the doctors we interviewed when Kara was pregnant, stockpiles of formula and guides that I dump directly in trash. E-mails from buy-buy baby in every inbox, the product of registering each address for 20% coupons to double up on big purchases. Like the rocker, the same one he died in. I researched rocker brands and styles to make sure we got a good deal. I've almost stopped all the e-mails now, clicking through pages of distractions to get off the lists. Sometimes these little things leap out at me and the inertia slides right back in, and I'm useless for the rest of the day, playing that image over and over again in repeat. The finality of his death comes back to me and I lose myself in it.

There have been many times that I wished for this process to be linear, for benchmarks, some kind of metric to measure my progress in. Some kind of guide that tells you how you should feel 175 days out from your son dying- Day 199 in the old count I used to keep here. Day 1 was the day James got sick. On Monday, it will be 180 since he died. Six months. Half a year, two months shy of James' entire lifetime. The laws of thermodynamics don't work though- not to measure momentum, inertia, or any of the starting and stopping in between. It's not terribly neat. Nothing about this is. The hardest part has been to understand that maybe that's not a bad thing. Maybe that's just the way it is, and it doesn't matter how stuck in inertia you get our how much momentum you build, as long as you find your way. I've decided to stop worrying about how.

Thank all of you for your thoughts and prayers.

Anna Rose

2012-01-08T20:05:00.003-06:00

For those of you who feel moved to do so, I would encourage you to pray for this little girl, Anna Rose. Anna Rose is a gorgeous little girl, and you can read about her at that link, her caringbridge, and here, her family's site. Her father tweets @weloveannarose. Anna Rose has ATRT, the same type of pediatric brain cancer which James had.

For those of you who may have joined us recently, ATRT is short for atypical teratoid rhabdoid tumor. ATRT is a particularly aggressive form of brain cancer that occurs primarily in children, most often quite young children. Atypical means precisely what it always does, i.e., strange, unusual. Rhabdoid is the tumor type (rhabdoid tumors occur most often in the brain and spine, but can occur elsewhere). Teratoid is the word I didn't know when we started on this journey and received James' diagnosis. According to Google, teratoid means monster-like. And that is precisely what ATRT is, a horrific, monstrous form of cancer whose victims are the most vulnerable among us. ATRT requires one of several highly aggressive treatment plans, one of which Anna has endured, and ones which provides no guarantees. I cannot imagine what they have been through. Please keep Anna and her family in your thoughts and prayers.

Kara and James

2012-01-05T23:06:00.005-06:00

This is a picture of pregnant Kara. She was radiant.

Kara worries a lot. She worries about things that would never even appear on my radar, like matching clothes and ottoman throws. She worries about people more than I do. I am often more selfish, more indulgent to put it mildly. I don't usually worry, I tend to assume that everything will work out in the end, one way or another. Kara once found a flight to Germany on the cheap over spring break when I was in law school- nestled perfectly between exams and deadlines that demanded my full attention. She thought it might be fun. I decided, somewhat whimsically, that we should go to Germany. I responded in what might be described as a typically Matthew way- somewhat impulsively but decisively. I tracked down the flight, compared alternatives, and within a week or two was mercilessly scouring travel sites for the trip we’d be taking to Germany over springbreak, law school or no, and regardless of the fact that we couldn’t actually afford it then. I am more easily distracted, and much less practical. She is more grounded, more level headed, and a thousand times more practical. We go to test drive a car and I buy it then and there, provided I walk away with what my research and I consider a "win." Kara would never do that.

All of this is to say that Kara and I are complete opposites, in almost every way. Our approach to parenting was no different. I will freely admit that I was terrified of becoming a father. Anxious, excited, yes, but also deeply terrified. While I love my father dearly and admire him, when I was young we were never really close. We simply didn’t have a lot in common. In terms of temperament, we were never anything alike. When I was younger I was often difficult, broody and introspective with a quick temper. My father is gregarious and quick to make friends. If he wanted to talk baseball, I wanted to talk history or politics. If he wanted us to play golf together, I quit playing on general principle. When we learned Kara was pregnant, I hoped for a girl, because I wasn't sure I knew how to foster a good father-son bond. Kara was the only person who thought it would be a boy- and as always, Kara was right.

Especially during the first few months of James’ life, I found it hard to adjust to fatherhood. I had no idea what to do. I loved James with all of my heart, but I made a lot of very poor decisions. I struggled with my role, with how to act and what to do. If it had been up to me alone, James probably wouldn't have done so well. But it wasn’t. James had Kara too. He had her calming, steady presence to look after him. And she did. Kara mentioned once that she never spent more than a few hours away from James. That was not the case with me. I spent days and days away from James. I have many regrets. More than once I told myself that if I missed x, y, or z it would be fine- I had a lifetime to make up for it. I was wrong, in every possible way.

I got better. It took a while to sink in, but fatherhood grew on me. My fears ebbed and I grew into my role. I embraced it as mine, not anyone else’s, and did the best I could. I came to realize I didn't need to be anyone's vision of a father, just James'. James and I developed our own rapport of actions and habits apart from Kara. Games like boom goes the baby, where I’d send him soaring higher into the air than his mother would ever allow. He was a huge fan of my swing pushing style. We had our own collection of nicknames and vocabulary. I called him little son. I'm not very original. We got to know each other better. Eventually, it became impossible for Kara and I both to imagine what our lives would have been like any other way, with a daughter or with any baby but James, with all of his unique quirks and characteristics. Even when he got sick, I always resented people who in passing would treat him and other babies as if they were interchangeable, from absent minded respiratory therapists insisting they "always" do this to the lazier general (not neuro)anesthesiology nurse who failed to notice the sex of the child she was about to operate on. People often forget that even at eight months old, a baby is more than that- each is a person, slowly acquiring the traits that will define them.

Kara was instinctively and naturally brilliant with James. A love poured from her for him that was a privilege to see. Her precious baby boy, from the first moment in the hospital when I held him against her chest. She knew to do all the little things that I did not, and performed them flawlessly. I learned a lot from her example.

When James became ill, Kara led by example. No crying in James' room, bright faces and games for Jamesie. Our disparate styles became an advantage, as each of us processed the information in our own way, so that we could inform the other. Our perspectives often differed, but they informed one another. We learned from each other, and because we were different, we were able to be strong at different times, which often translated into the right times. We could lean on each other, so that both of us could be there for James. We were finally fully functional. And none of it would have happened without Kara, indeed, most of the best and most perfect moments of James’ life are impossible to imagine without Kara.

There is no one on this Earth with whom I would have preferred to go through that with. And there is no one who could have endured it so perfectly. Kara is, by any definition of the word, a fantastic mother. I truly believe that God chose her to be James’ mother because he knew how extraordinary a mother James would need, and he knew that Kara could provide that to him. I am grateful for that, and much more.

New Year's Eve

2011-12-31T19:46:00.004-06:00

Here's James in one of my favorite cell phone pics of him, a candid James in the bath shot, from near New Years last year (how I wish the photos on my phone were time-stamped).

I never liked New Year's Eve. The fireworks, the lack of purpose, the hollow resolutions always fell flat to me. Always advertised as the biggest party of the year, I long felt I'd been sold a bill of false goods. I spent too many New Year's Eves at home and sick, recovering from one operation or another, nursing jello and resentment for my able-bodied peers. When I grew older, I became more annoyed because now it seemed I'd missed out on the foundational precepts of the holiday. The ball, the kissing at midnight, the countdowns. These all rang hollow to me, celebrations without context.

What after all, is there to celebrate? The year changes, there's nothing novel to it at all, it's not even exact- otherwise we wouldn't need leap years. One more trip around the sun, one of several billion before and several billion to come. Yet lately days have taken on arbitrary meaning to me, the 16ths and the 29ths of the month suffering under the weight of all that has come before. Time passes faster now, sometimes I feel as though I went to sleep one day and woke up six months later. The time we had with James feels so full, and all that came after so brief in comparison, abbreviated by what its relative lack of importance.

Looking back on some of the entries from our time in the hospital and then at home before we lost James, it really wasn't that long at all. Less than four weeks passed between the time when we found out James was sick and when we held his funeral, but that time was filled with so much. So many doctors, plans, and news. So much research into new types of cancer, evolving diagnoses and treatment protocols. Spurts of adrenaline- we have to do this now- interspersed with immense grief. And then, after all of that compressed into one little ball, nothing. It seems like a flash between then and now. Time itself seems split into two segments, there is Before and there is After, with the timeline delineated by a quick stab of trauma.

Perhaps that's why I'm excited to leave this year behind. I'm eager to see 12 on the end of the date instead of 11, because there are so many horrible dates that end in 11 and none in 12, so many days I'd like to leave behind, though I know I never will. Last year we took James to a New Year's Eve party and left early, as James himself quickly decided that he would have little patience for for fireworks and champagne. And Master James had complete decision making authority over all matters relating to the schedule. We made it home shortly before the New Year and it passed with barely a notice, fireworks cracking in the distance, the dogs alarmed. James slept through it all, and so we slipped into 2011 with no suspicions. This year, I intend to welcome 2012 gladly, eager for a better year. Suffice to say, if the Mayans were right about the apocalypse I am going to be very annoyed. I don't have the patience for any more life-altering disasters this year. So I'm eager to say good bye to 2011 and 2012. I just wish that we had James to share it with.

Happy New Year to you all. Thank you for all of your support and your prayers this year, we needed every one of them.

Should have

2011-12-27T23:18:00.000-06:00

So I know it's been a while since I've posted on here. It just didn't feel....right.

I was flipping through channels on tv the other day, and caught part of an interview that Jennifer Lopez was giving. She was speaking about a health scare that her daughter, Emme, had a few years ago. Apparently one morning Emme woke up with a bump on her head. J Lo started panicking and said, "If she's not going to be ok, I'm not going to be ok."

Well James is not ok. And therefore, I'm not ok. Nothing is ever ok.

Everything I say or do seems like a substitute for what I "Should be" doing. Like James "should be" 14 months old now. I "should be" wrapping Christmas presents and decorating for my baby's first Christmas that he will actually participate in. I "should be" baby proofing and taking trips to the park. I "should be" dressing James in the Christmas outfit I bought him last spring on clearance that is now just hanging in his closet with the rest of the fall and winter clothes I had stocked up on.

I'm not sure when the "should be's" stop. Do they ever? Is there ever a time where this alternate universe becomes reality? Or will life always be measured by what should have, could have been?

I can keep it together most of the time. I have the whole "pretending to be fine" thing down pretty well I think. I can smile and laugh. I can tickle other people's children and kiss their sweet cheeks. I can push away the thoughts and memories that come bubbling up so that I don't become a crying mess in front of anyone.

I don't let myself go through the pictures and videos from these dates last year. I can't go there. When I start to do that, I get really angry. I get mad that last year I tried to be the perfect wife, mother, daughter in law, trying to appease everyone. In the end, I ended up exhausted and and didn't even get to hold my child during Christmas eve service or while opening presents. And nothing was ever good enough anyway.

The best thing I can saw that has happened the last month or so is that it's over. I survived. I don't mean to be really depressing, and to be honest, this is a notch above the depressing that is usually lingering in my mind.

A few months ago I was watching the Divine Secrets of the Ya-Ya Sisterhood. There's a part in the movie where Sidda's (Sandra Bullock) fiancee is talking to Vivi. He says to her that Sidda is always "Waiting for the bottom to drop out". And Vivi replies to him "You know why she thinks that, don't ya, honey? Because it did. It always did."

And I guess that's how I feel most days. The bottom has dropped out. For some reason, in my life, it always does. Most of you probably have a friend that just can't catch a break. Well, I'm that friend. Right now I apparently have a severe cornea infection that is finally clearing up. I'm closing 2011 with a bang. I mean, who gets a cornea infection? At this point I'm afraid to ask what's next.

And it's not just the eye infection- it's just been a really bad year. James's death was not the beginning or the end of it.

I'm trying to be hopeful that 2012 will be better.   I'm not sure what better means, but I'm hoping that at the very least it's not worse.

Thank you all for your emails and cards, and sweet packages. I am horrible and haven't responded to a single thing lately. I just haven't functioned well for a little bit. I hope anyone who sent me anything understands....In my old life I would have been much more on top of things.

Merry Christmas

2011-12-25T11:15:00.003-06:00

Merry Christmas. Though this Christmas is not what we hoped for, I am glad we had one Christmas with James. Here's a picture of him from near Christmas (a few days after) last year, playing in Mommy's lap. Every day was a James holiday, but I think he was really cute, even by James standards, in Christmas gear.

I hope today is filled with memories and laughter for all of you, that you and your families truly celebrate the season. Merry Christmas.

Lucky

2011-12-24T19:12:00.007-06:00

I used to consider myself lucky. I found the baby in the king cake two years in a row back in elementary school in Louisiana (in retrospect, small plastic items and small children shouldn't mix). I won raffles in high school. I even feel I have a better than average record in rock paper scissors. Given the opportunity to take a chance, I'll usually take it. I am not risk-adverse.

Part of this is because I always thought I began life with a fair bit of bad luck, and the universe had already dealt me the worst statistical hand I was likely to get early in life. Things could only improve. I was born without a left ear, which in my case is the culmination of two interrelated birth defects, microtia and atresia. The odds are right around 1 in 10,000 births. Microtia means "little ear" and atresia means no ear canal. I was born with at best an ear lobe and nothing more, smooth skin instead of cartilage. Though the doctors in Longview where I was born thought I'd have trouble talking, that was never a problem. Hearing sometimes is. I'm almost completely deaf on my left side. Over the last few years my hearing has continued to deteriorate. I even sometimes watch TV with closed captioning now (much like your grandfather). I've never had stereo hearing and frankly don't really understand the concept- to me sounds don't come from any direction, they just come. For the last two years my "ear" has been ringing non-stop. Tinnitus, I'm told. It's exactly as annoying as you think it is.

When I was five, better doctors than the ones who said I'd have trouble talking took cartilage from one of my ribs and grafted it onto my skull in the shape of an ear. Three years later, they drilled a hole in my skull in the shape of an ear canal to help me hear. It didn't work. Two years ago I had that canal closed because it had been leaking puss for the better part of five years and I couldn't hear out of it anyway. There are more operations I could pursue, but I've opted out for now. In between these two major operations there were several smaller procedures as doctors tried to make the appropriated rib more appealing and covered it in skin grafts. It's actually quite well done, I've seen examples of doctors who tried to do this and didn't know what they were doing, mangled skulls and cartoon ears that deserve a lawyer's attention. I was very lucky to have a talented team working on me.

The odds of a James Camden are considerably lower than the odds of a James Matthew. Rhabdoid tumors, such as James', occur in about 3 out of every 1,000,000 children. The number of cases which occur in the United States every year is infinitesimal, measured at most the most in 2 digits. They are exceptionally rare, exceptionally aggressive, and only recently identified as an independent kind of tumor. This is one of the many reasons we started James' fund.

When James first got sick, as always I was convinced things would work out, that yet again my luck would hold. There were risks, but we were more than prepared to take them, and everything we read convinced us (not inaccurately) that survival rates for children with ATRTs were improving. If Children's has about two a year, and they lost the first, James will be the one that lives, an awful thought, but when it happens you cling to anything to give yourself hope. Even as his prognosis got progressively worse, I never actually believed the worst. It's just a roadblock I thought, he's going to be ok. He has to be ok. I never for one moment allowed the idea or even the concept that James would die to enter into my mind. Even when I came to know intellectually that James would die soon, I never registered it with even a fraction of the emotional impact that arrived when I saw him struggling to breathe that last day, his frame shaking as he struggled with each with jagged breath to tear enough air from the room to live.

When I considered my luck, I did so in a way that convinced me that if anything, God gave us James because he knew that Kara and I were perfectly made to be his parents, even me. That what he would go through, while horrible, would be something to which I could in a small way relate. We could bond over hospital humor I thought, share in the brotherhood of people with holes drilled in their head. One of the major side effects of his chemotherapy was likely to be hearing loss, again, I thought to myself that here too was an area where I could help James and guide him. My parents never understood what that felt like for me, I would know better for James. I thought what I went through would give me some small fraction of understanding of the childhood of doctors and hospitals he was doomed to lead, one I experienced on a much smaller scale myself. I knew what it was to be "different" as a child.

I was wrong. Wrong about my luck, wrong about God's plan, even wrong about how awful it would all be. For a while, this made me very angry. I had a better chance of winning the lottery than having a son with a rhabdoid tumor. Where's the justice in that? I felt this weird kind of reversal in my life. Once upon a time I'd see a story on the news about a family whose child had some horrific form of cancer and think to myself "that's awful" but with no understanding. With no comprehension even abstractly of the pain they were in. No grasp of the reality they faced, ensconced in hospitals and dependent upon the whims of doctors and specialists that until recently they did not know existed. It always seemed so remote. The odds of it happening, like the lottery, were so small that it was never seriously a something to consider. Then we were that story on the news. James the candidate for compassion and charity. The world changed overnight it seemed, and I was no longer a bystander, safe to exit the story at my convenience. How did that happen?

As I said, this made me angry. As with so many other things, the question is why. There's no answer. I see so many people, so many families that go through their lives with nothing happening to them. No cancer, no birth defects, no trauma. I am obscenely envious, but at the same time terribly grateful that no other set of parents should ever endure what we endured with James. I don't wish it on anyone, I'm simply jealous of how easy it seems for them. How commonplace their days appear, unremarkable. I catch myself smiling and playing with babies in the supermarket lane, their mothers looking at me strangely. I want to tell them to cherish the time they have, but I never do. They should.

The more I think on it though, the more I'm convinced there's nothing lucky about it, one way or the other. There's no plot by God to punish Kara and I, no decision to make us suffer. I don't think God acknowledges luck anyway, it seems a much more human concern. It simply is. and the only question that matters is how we respond to it. If anything, I can only think myself incredibly fortunate. I lost James, but I had eight months with that boy. Eight months as a father to my perfect little angel. How could I be luckier? He was more than I deserved, and more than I hoped for. So I don't know what I think about luck, odds, or fate. I only know what happened. And there is nothing I am more grateful for than James.

Thank you for your thoughts and prayers.

Together

2011-12-18T22:44:00.004-06:00

I do a good job hiding it, but I'm bit of a procrastinator. It's very rare that I actually won't do something, but the longer I have to dawdle on something, the longer I'll take to do it. If anything, I'm better in a crisis, managing events that require rapid responses. This is a weakness of mine I'm aware of, but it does get me into trouble from time to time. In law school, I developed a bit of a routine to keep up with things. Monday through Friday I'd do my daily work, briefs, notes, etc. Friday nights off. Sunday evening for Monday's work. That left Saturday as a "free" day. Except it wasn't. To really get ahead and do well, Saturday needed to be an outlining day. For those of you fortunate enough not to have attended law school, outlines are like your own personal Cliff Note's for any given class. A brief summary of what's important and what you should study. The distillation of your notes. For me, Saturday was always a day for outlining, but as I mentioned, I'm a procrastinator.

The result typically was that every quarter after my first few (when I was too terrified to skip anything), once I thought I had the hang of it down, I'd occasionally skip outlining for a week or two. Like taking a second cookie or a second helping mashed potatoes, it's not something that bothers you at the time. Do it enough though, and eventually it adds up to a problem. So a few weeks in I'd find myself facing a particularly punishing Saturday, set up by my own laziness. Slowly, a sense of panic begins to set it in as you realize just how much work you've put off. I'd let it fester for a day or two, but always at some point it would end with a moment when I just decided to do it, to go in, kill a day, and just get it done. This decision was usually preceded by a little mental pep talk along these lines: "Pull it together Sikes. You need to calm down, relax, and get your stuff done. This is a waste of time. You will get nowhere doing this. Get it together. Now." For some reason my internal monologue calls me by my last name when I'm angry, much like a gym teacher. It always worked once I made the commitment.

The "pull it together" advice line is something I've used in other circumstances. Ones more important than my procrastinating on a few outlines. The first day of the bar exam, the kid on my left trembling, his fingers a nervous tap tap tap on the side of his laptop. My grandfather's funeral, sitting straight up in the pews with my eyes fixed on the casket, frightened that I'd miss the minister's cue to give the eulogy, even more scared I wouldn't finish it once I started. Before each and every one of my surgeries, fighting the nagging conviction I wouldn't wake up afterwards, even though I always did. A minute or two after we found out about James. I stepped full away from the doctor, knowing he didn't have any answers I wanted to hear. I stood by James' PICU crib, resting my hands on the railing and staring right at him, certain if I let go I'd fall down. Most of the time, it worked. The pep talk came and went, I got through it, and everything was fine.

The pep talk doesn't work anymore. Actually, that's not true, it works just fine on a lot of things. Not for James though. It's almost as if there's nothing to pull together, no core to form. The memories I have are scattered, woven together with everything and too distinct to coalesce into something I can hold together in a single moment or by an act of will. Even if I could, I don't think I'd want to. I can't summon willpower and finish this off to move on the next thing. It's been five months and I'm functioning. I've come a long way from the first few days and weeks where everything beyond my nightstand seemed too far away. I just haven't moved on. I haven't pulled it together and conquered. Maybe I won't. That's what they say in all the pamphlets, the ones the hospice sends to you once or twice a month. You don't "move on." It's more a reconciliation process. Or so they say. I just know that this isn't something I can will away.

Thank all of you for your continued thoughts and prayers. The holidays are hard, and it's good to know we have people to lean on.

Graveside Revisisted

2011-12-11T19:15:00.004-06:00

When I first came here, it was hot. My iPhone overheated laying in the grass by his grave, and my Kindle threatened to die for the same reasons. Despite myself I laughed and laid down in the grass for a moment, spreading my arms to soak up the sun, the rays warming my skin. I've never minded heat. I virtually never burn, and I've always found the the sun relaxing, a natural sauna. I wondered vaguely how far down the heat seeped into the ground, if six feet were enough.

To save the electronics, I retreated to a spot under a nearby tree, borrowing a bench dedicated to another child. The tree by James' grave is too young yet to provide much shade, a spindly thing with less leaves than one of the nearby bushes. Perhaps by the time I join him that will change. I stayed for a long time and read. The jogger came, dragging herself round and round the cemetery in some kind of death march, she parked under a tree to spare her car- but not herself- the worst of the heat.

I still go every week. It's an 80 mile round trip but I've come to find the drive relaxing, even useful for phone calls to catch up with friends or family I otherwise might not call. I give evasive answers when they ask what I'm doing, somehow "going to the cemetery" seems like a macabre response.

It's amazing how much things have changed since I started. There is a slight chill in the air now, the sky is gray and the sun is nowhere to be seen. Unlike my tolerance for heat, I cannot bear the slightest cold, the legacy of a childhood spent in winterless South Louisiana and Houston , so I'm bundled up in a fleece and boots. Rain spits fitfully from the gray crowds in the sky, not enough to soak you, just enough to be annoying. Only one leaf remains on the spindly tree. To a casual observer, there is no sign of the burial apart from the marker. The grass has slowly creeped over the edges of the soil, carefully graded down week after week from the mound it began as. To me, you can still see where the grass isn't as dense as it should be in a few places, how the soil still settles after a rain at a slightly different level than that around it. It's spongier. If you're careful, you can notice that James' grave is shorter than those that have popped up around him. You don't have to dig as long of a hole for a child. The jogger remains, but she's bundled up as well, an oversized hoodie draped over her skeletal figure, oblivious to these elements as well. She's grown her hair out, it's going gray but she's dyed it. She moved her car to a new spot, as there's no need to protect it from the sun. I wonder if she remembers me.

If the weather's decent, I'll read for a while. Otherwise, rain or shine, I'll spend a few minutes thinking of him, of everything that might have been, and everything that was. Each time before I go, I close with his song, "Jamesie the Giraffe."

I sometimes wonder why I still go. I can't change anything there, or anywhere. In the end, I think it's an excuse to mourn, a directional focus for grief. I spend a lot of time trying to figure out the why of things- answers are important to me- but this situation does not lend itself to that. So I'm not looking for an answer in Denton. I'm just looking for somewhere to go.

Birthday

2011-12-07T23:08:00.004-06:00

This is a picture of James from my birthday last year. If anything, I imagine James was mildly surprised when at least one song was not sang directly to him. Possibly relieved.

Tomorrow is my birthday. I will be 28 years old. For perspective, that is 10,220 days. James lived 257 days, or roughly the rounding error between 10,220 and 10,000. When I was young, I made a point of celebrating my birthday as an event. Terrified of being lost in the cluster of holidays between Thanksgiving and Christmas, I made a big point of forcing everyone to celebrate my birthday independently, to recognize it as my own special day. I was a horribly selfish kid like that.

I don't want to celebrate this year. I've been lucky so far. Only my secretary noticed the sign in the break room at work. Friends and family I can limit to text messages, or better yet, facebook posts. When someone asks what I want, I direct them to James' fund. That tends to deflect them quickly from asking what I want to "do" for my birthday. I simply want the day to pass.

There's no achievement here. If anything, my birthday is a reminder of the fact that somehow despite all of my many mistakes, I'm really doing just fine. I will be completely ok this year, and probably the year after. Without trying particularly hard, I've managed a little over a quarter of a century on this Earth. Looking back on it, I've wasted a good many of those. I never really felt that way before. There was just no sense of urgency.

One of the "grief" e-mails I got today encouraged me to write about my anger "to unload some of that pressure." That's how my birthday makes me feel. I'm angry. I'm angry that I don't have my son to celebrate it with. I'm angry that I get to nonchalantly cruise through the years when he barely got months. I'm angry about the e-mails in my inbox directed to "James Sikes" wishing him a happy birthday and offering him a good deal on a birthday dinner or bottle of wine. I'm angry at myself for filling out the forms with my first name. I'm angry about all of the time I feel like I wasted when he was here away from him. I'm angry that he never really had a chance, after all we put him through. I'm angry I can't hear him laugh, and that I've memorized all the recordings I have of him laughing down to the second. Above all, I am angry without purpose, because I'm not prepared to deal with the alternative.

Some days are better. Some days I'm grateful for the time we had. And I am. I would never wish that James were not a part of my life. Holidays and events have an unfortunate tendency to remind me that he isn't, and focusing on that rarely ends well.

In other news, I'm slowly making way through the comments. I'm in June now. At this rate, I'll catch up with the current entries sometime next spring. Looking back, it's amazing how much support we had even in those early days. Thank you.

Review

2011-12-01T23:00:00.003-06:00

Here's James in his late-period mohawk stage. Very punk. It took months for his hair to get long enough that it laid down on its own.

So I'm going to try something new.

As I've mentioned before, writing in this blog has been cathartic for me. For a lot of different reasons, I'm not big on "sharing." As the quotes indicate, the whole idea is more of a concept than a practice for me. I'm the sort of person who would prefer to give a speech to a room full of hundreds of people than engage in a one on one conversation with another person about my feelings. Presented with the opportunity to talk about my feelings, my natural inclination is not to say a word or better yet to change the subject. I will do almost anything to avoid these kinds of conversation. This is not a strategy I recommend. It is simply my default strategy. I'm in recovery.

If Kara had not started this blog, it is entirely possible that outside of a few clipped and evasive conversations, I never would have said anything to anyone about this. I would have taken it all and kept it to myself, hoped to drown in it some activity or just to wait patiently until people stopped offering to talk about it. I am extremely glad that I didn't do that. Trying to contain something like this cannot work. The substance of the trauma is too corrosive, bottled up it inevitable seeps out of the container and contaminates everything. While I've had my share of setbacks in life, nothing I have experienced before even begins to rise to this level. Losing James permanently altered the fabric of my life in ways I'm still coming to terms with. Changes necessitate new strategies and in my case the shift in strategy has been for the best.

Throughout it all though, this blog has been an important forum. Despite my natural inclination, it's been very helpful to have somewhere to talk about everything, even if talking takes the form of venting, complaining, or rambling.

One thing I've often regretted is that I have not thanked you all for your patience and your support individually. So I'm going to try something new. I'm going to go back to the back to the beginning of this blog and try to respond to your comments. Over the course of the last few months they've meant a lot to me, and it seems appropriate that I respond to some of them. So we're going to give that a shot. This will also give me the opportunity to review what happened. I have not gone over those posts. Often I didn't even read them myself before Kara or I published them. Sometimes I just can't go back there. Thank you for keeping us in your thoughts and prayers.

Twenty Nine

2011-11-29T23:46:00.006-06:00

I'm a day late with this, but here it is.

For me the 29th is always harder than the 16th. The 16th at least represents some sort of finality, an unmistakable conclusion. It is an end point. The 29th is full of possibilities, unanswered questions that tug at edges my composure. The improvements are noticeable but incremental. October 29th was more unbearable than November 29th. Even the monthly counting itself represents a fascination that should have been ebbing. James would have been 13 months old, over a year and rapidly heading away from the period in which age is measured in months. I don't tell people I'm 335 months old for instance, and I suspect neither to do you. At first we measure in days, then weeks, then months and before you surrender to years entirely you're in elementary school, lording your five "and a half" over classmates. James will never make that progression, and so just as he's frozen in time so are the units in which I keep calculating his age. 9. 10. 11. 12. 13. Five 29s gone. Almost half a year. I'm sure one day it'll stop, but I wonder when.

Each time,it seems something else strikes me in exactly the wrong way. Today for some reason is was the background picture on my phone. It's of James and Kara, posing before his last photo shoot with photolanthropy. We coaxed a smile from him and he's bouncing on Kara's hip. We don't know what's coming and we're happy. It was one of our last good days, before salt, swelling and the tumor caught up to us. His pictures are everywhere of course, but today each time I turned to my phone the dateline under the time of "Tuesday, November 29th" grabbed me. When will I change the background? There will be no new pictures. What would I have changed it to? James walking, talking, chasing the dogs? Rhetorical questions, all. It's always something.

For me, the best response is usually to do something. What isn't necessarily as important as the act itself. Work, find a new book, watch a movie, work out, it doesn't really matter. The important thing is to have something to do in order to prevent the rhetorical questions from devolving into a rhetorical narrative. I'm not suggesting reflection isn't important, it is, but for me at least it's important that it be at least purposeful. Four hours in bed focused on loss rarely helps me. There's a place for it, but I try to leaven my reflections with the good things when I can. James made me smile much more than anything else. When I can remember the good things as they were, not in the light of what isn't, I feel better. I still mark the time, but I can remember the 8 29s we had to celebrate and cherish them accordingly. This is sometimes easier in theory than practice.

So today it was the phone. We'll see what December brings. I've attached a photo of the last of James' weekly pictures. This is from his second full day in the hospital. He'd had surgery and been under general anesthesia multiple times within 48 hours of this picture, but the boy just can't stop smiling.

Thank you for your continued thoughts and prayers.

Thankful

2011-11-24T20:36:00.005-06:00

Here is a picture of James from last Thanksgiving. He was thankful for his Daddy. I think Kara dressed him in that because she knew if it said Daddy I'd be more inclined to allow my son to wear a shirt prominently featuring a Turkey. She was right, though if push came to shove I think we both knew he'd be wearing whatever she put on him, no matter how bedazzled. He was very cute, though I'm sure he had no idea what all the fuss was about.

I am thankful for the eight months and seventeen days I got to spend with him. I am thankful for his hair, his smile, and his laughter. I am thankful for the way he used to tug at the buttons of my shirt, perplexed that they were too flat to my chest to pop into his mouth. I am thankful for the soft way his chin rested on my shoulder during naps, and the rhythmic feel of his chest rising and falling with each breath against mine.

I am thankful for all of those small things, snatched from time, preserved for eternity. James and I reading from my Kindle together at two weeks old. He wouldn't stop crying no matter how much I walked him, rocked him, or cuddled him. I tried reading to him from one of his books- he had a library- but I needed one hand to hold him and couldn't quite master the art of holding both the book and James in a way that allowed me to turn the pages. So I picked up my Kindle and read Michael Lewis' "The Big Short" with him, as I only need one hand to turn the pages of the Kindle. He fell asleep during a discussion of bond tranches. If only I'd known finance was the answer to begin with. A little over six months old at the Arboretum. Kara was sick so we took a Daddy and James solo trip. We laid out on a blanket together. I attempted to take pictures but failed, James looking on in bemusement as if to remind me I should know better than to try a photoshoot on my own. We moved on to food. James wasn't interested in his food, but he liked the taste of the lemonade I bought out of the vending machine, which I know perfectly well I shouldn't have let him try. I was never a great disciplinarian. If I had it to do over again I'd have bought every drink there and let him have a sip.

I am thankful for all of these things and more. We've received a lot of support since James got sick. I've been overwhelmed at the generosity and kindness of strangers, from the giraffe contest to the notes that continue to trickle in months later. I went to the Starbucks on Northwest Highway a few weeks ago. Kara and I went through the drive thru the day after James died. In the cheerful way of baristas everywhere, the clerk asked us how we were. I think I stuttered to "not great" while desperately waiting for her to hand us the cup. She cheerfully asked why and I told her our son just died. I still remember how shocked she looked, and the awkward precision with which she rushed our cups out afterwards. When I went this time, a different barista took my order, but as I went to grab the cups, there she was, rushing up behind the barista actually handling my order. She said she'd been thinking my wife and I, and she hoped we were doing better. There've been a lot of things like that I'm grateful for, people have no cause to know us or think of us who have gone out of their way to help.

I wish I could say all of that made today easy. It did not. The holidays remain difficult, littered as they are with opportunities for you to imagine what should have been, no matter what is. I miss him everyday, some days more than most. Still, I'm more thankful than not. I was blessed to be James' father. I couldn't ask for anything more.

Thank all of you for all of your support this year. Your prayers, your thoughts, and your words. Enjoy the holiday and your families, and thank you for thinking of ours.

The sun is starting to peek out

2011-11-18T00:21:00.000-06:00

So this week has been relatively better. It's the first week that I haven't just felt numb most of the time- which is good!

My emotions still go all over the place. But I would say that this week the lows aren't as low. I didn't go to the cemetery on the 16th. I really don't know what to do out there. And I don't like that the 16th of every month reminds me of James' death. Just like on Saturdays I can remember that he died on a Saturday. I'm trying to reframe those days so they aren't so debilitating, if that makes sense at all.

The past few weeks I have been trying to figure out what the future looks like. For a while, I honestly wasn't sure that I cared. Every moment of joy that I had over the last several months made me feel immediately guilty. Because I shouldn't be feeling any happiness- my baby died. So why should I laugh?

I'm starting not to feel as guilty about things like that. I still do from time to time, but the time in between is getting longer and longer. Which I think is a good thing. I don't feel like my sadness is all-encompassing as much. I mean, it's still there, definitely, but it's not as debilitating. I know I keep using that word, but that's what it felt like for a while- debilitating, disabling. Almost like I needed a handicap sticker placed on my entire body. Or a sign that says, "Tread carefully. Extreme emotions ever present."

I know that there are bound to be days where it feels worse. But I'm starting to recognize that there are days that feel better too. And both of those are ok. I don't want the 16th of every month to be a reminder of what I lost. Because I had 8 other 16ths with James that full of the most special times. Or maybe not special, they may have just been typical days, but now those average days I cherish.

I, of course, still miss my Jamesie. There isn't an hour that passes that I don't think of him. And sometimes there are 60 minutes in that hour that I am only thinking of him. This week I ate lunch at Panera. And remembered that last time I went to Panera with James, my mom was in town. I happened to order the chicken noodle soup (It has the least amount of calories and I was trying to be healthy. I really wanted the baked potato soup!). The last time we were there, my mom had ordered the chicken noodle soup and James ended eating all of the carrots and noodles from her soup.

It made me sad at first, but then I remembered the look on his face as he just went after those carrots and noodles. He had always hated the mashed carrots in the baby food jar, but he decided he liked these. He really did not like mashed up food in general. Once he realized that he could pick up food, like bananas and avocados, he enjoyed eating much better.

Thank you for being so supportive and listening to my ramblings. I feel like I always write when I am sad, and tonight I'm not completely depressing! These pictures are from right before Thanksgiving last year at the Arboretum. James was 3 weeks old. He wasn't as in to the pumpkins....but he was only 3 weeks old!

Digital

2011-11-14T21:38:00.006-06:00

I'm loading all of the pictures onto google. Trying to inoculate them and keep them safe permanently from the forces of the world. Broken hard drives, lost phones, and power surges. All of these are too fraught with danger for pictures of my James. Completely unable to protect my son in the flesh, I will immortalize him digitally. I will create a permanent record of these memories that cancer and nothing else can touch.

You can see him getting sicker in the pictures. There's an odd chronology. He's smiling, and then slowly becoming more distressed. He comes up in the hospital pictures at first miserable, but we're documenting it because it's a milestone- Baby's First Time in the Hospital- not because he had cancer. I still remember checking in at B6, toys in hand, joking that we were in for a long night and wondering if we should take bets on when the doctors would show up. I sometimes have a real problem taking things seriously. I never imagined we'd make our way to the PICU in less than five hours.

The pictures create an odd sort of timeline, one evolving into hell. A picture of his insurance card I sent to Kara to take him to the doctor with. A picture of him in the Medical City emergency room lying on Kara's chest, back when we were trying to take care of dehydration that was never the problem, and the least of the symptoms. In his Moses basket before we went, perhaps the day before, crying because his head was splitting apart and no one knew. I feel so guilty I did nothing to help him, that I didn't know what he was trying to tell me. In a Mavericks shirt Kara bought him from a street corner, his one and only championship. He's sick but still trying to laugh. The tumor never managed to rob him of his joy. Now the picture show that he's in the hospital, now we know. He's playing despite the drain sipping fluid off his brain- we're struggling to keep his hands clear of the wires, which he naturally found fascinating. A giraffe in hand a bright smile- never mind the the wires, the drain, or any of it. James didn't have time to worry. He loved to play, He loved everything.

Now he's had his surgery. Poor baby, but he's still so happy. He was never the same after. He never managed to get completely well from the surgery, but the tumor did. He never had the time, he wanted to, he always did. He fought so hard. I am proud of him. Prouder than I've ever been of anyone of anything. Now the port's in him and we're spiraling into the last few weeks. Days are precious but we don't know it, we're ignorant to the future. We still have hope. We still had James. Now it's too late- he's at home and in his moses basket again, but now he can't cry anymore. All he can do is rest, and wait. Now we're just clinging to hours, desperately trying to freeze time. When I think about it now I feel guilty for sleeping. I only had so many hours and I wasted at least a few sleeping, when he was still alive and breathing. He woke up the morning he died having trouble breathing, I wonder, if I had stayed up that night, would I have noticed when it started? Could I have done something? I should have known better, done things differently. I feel guilt because it's better than loss, it's easier to blame yourself than to acknowledge there's no one to blame.

So I'm memorializing all of it, every picture on my phone, in my possession, or anywhere. I will test and break gmail's limit, and after that I'll find somewhere with enough space to store it all. Physical storage, like the flesh, is too weak to be trusted. Of course the internet itself is just as impermanent, only as reliable as your connection and your power supply. There's no safe place but my mind really, but we may as well double up on them.

A few weeks ago I lost my phone. I subsequently recovered it, but while it was lost I kept worrying about it. I had everything backed up, but I kept worrying I must have missed something. What, I didn't know, but that didn't stop me. It also made me worry about the reliability of purely physical back up. What if something happened to my phone and my computer? In response I've begun digitizing.

When your child dies, you become all too aware of the value of the pictures you do have. The timeline is frozen, and your experiences are ended. Therefore each picture, and you know exactly how many there are, becomes precious, a treasure. There will be no more, and you know that each and every one is precious. Each pose, each smile, every second of video. You once took the minutes casually, watching him and not recording. Now it is all essential, it is all unique. The fear is forgetting. Preservation becomes a goal in and of itself.

On one level this is all pointless. My son is not, and was not, the sum of his pictures. Each and every day of his life he was more- a gift from God uniquely blessed. Each of those days was a gift. We were blessed to have him. We were honored to know him. Still, a certain paranoia infuses everything, a need for preservation. It's more for us of course. James has no need of it. It's just something to do. Something to remember. As with so many things these days, I'm finding that the goal isn't necessarily what you want, but what makes you feel a little better. It's not about huge victories, but small ones scattered throughout the day. There's no epiphany, just an assortment of moments that move you forward.

Thank all of you for your continued thoughts and prayers. Today marks 4 months from the day we lost James. In a few articles I've read, they've suggested 4 months is a magic number, the number of months by which it starts to make sense. I don't know about that. But I do know that we've been blessed with a lot of support, and I thank you for that.

11.11.11

2011-11-14T00:07:00.000-06:00

I was a bridesmaid this weekend in my friend Amanda's wedding. She looked so beautiful, and the wedding was her perfect fairy tale. I was so happy for Amanda and Evan, but I had so many conflicting emotions going into the weekend.

When Amanda asked me to be a bridesmaid, my life was so completely different. It's almost like my life has three stages now- before James, with James, after James. I made the hotel reservation the week that James was throwing up. When I pulled up the hotel confirmation this week, I realized that I had made the reservation with a requested crib. Because even though James had been throwing up that week, I truly thought that it was a bug. I would have never guessed that he wouldn't have been there.

I thought I would put some Jamesie and Mommy pictures up. These are from Easter Sunday.

And so the reservation sort of sent me into a downward spiral. Last Friday, I finally tried on my bridesmaid dress. I had picked it up a week or two after James died and it had been sitting in my closet ever since. I keep thinking about the day I ordered it. James and I had driven out to Firewheel in Mesquire (for those of you Dallas people). It was the closest Alfred Angelo store. I assumed that the store opened at 10 and didn't check the times. It opened at 11. We got there about 10:30 and had time to kill. We went to the Starbucks next door where the barista guy smiled and made James laugh.

We then decided to go hang out in the backseat of the car because James was hungry. So I fed him in the backseat (which I swear the whole world has seen my boobs at this point). I accidentally left my coffee cup on top of the car, and so everyone that walked by noticed first the coffee cup, and then James and I in the backseat waiting. The store opened, and I grabbed a few dresses to try on. James ended up playing on the floor of the fitting room, but was over it pretty quickly. I chose the first dress I tried on, paid, and headed out into a pretty large storm. I remember calling my mom and asking her to look at the weather to make sure that I should really start to head home. Precious cargo in the backseat. James slept the whole way home and we made it safely home.

For some reason I remember every single detail about that morning. I remember what he was wearing. A blue Polo romper onesie. I had meant to put on shoes, but they didn't quite make it on that morning. And it was warm, so no big deal. Hair partially sticking up, like always. Gummy smile.

Little moments like that, forever ingrained in my mind. The simplest of tasks, yet those are the moments that summed up our days. I like remembering him this way as opposed to sick in a hospital bed.

At the reception, a woman (I think she could have been the grandmother) headed out to the dance floor with a baby boy about how old James should be. And then I lost it. I hadn't cried all weekend, and then I just lost it. I spent a considerable amount of time in the bathroom crying. I just really thought that he was going to be there. I still can't believe that he wasn't. He should have been.

I posted on facebook about that last part. I know alot of people try to say the right thing, and I understand that. I know that so many people want me to have another baby immediately, and that they think that encouraging me in that direction is the right thing to say.

But- and I mean this in the nicest way possible- I am absolutely, unequivocally not having another baby in the near future. There are so many reasons why. I'm hesitant to list even one of them, because someone will have a rebuttal for that particular reason, and then it will just go on and on. I really wasn't going to even say anything about it, because it really isn't anyone's business, but there have been so many comments lately about it that I feel like I need to say that.

I know that many people won't understand that, and that's ok. But my hope is that you all won't place judgment and know that this isn't a spur of the moment decision. Bringing a child into the world isn't something that should be decided on a whim. It's a lifelong commitment, for however long that life lasts.

So I think I need to revise my list about things not to say to people grieving the loss of a child. I think number one on mine right now is "You can have another baby" or anything along those lines. Or anything that has to do with bringing or doing things with another child. Because I don't want to do those things with any other child. And to imply that it would be the same to do those things with another child is saying that James wasn't unique for who he was. I don't want to dance at a wedding with another child. I want to dance with James. I want to see the expression on his face as I dip him to the ground. Or as we shimmy and shake. Or how his eyes follow the lights across the ballroom. Or maybe how he might have been walking now and see him walk across as people danced. I don't know what he would have done.

And I know that no one means those comments to be hurtful. It's just that I find now it's better when I sort of let people know when comments bother me.

Did anyone make a wish at 11.11.11 at 11:11? I'm still waiting to see if mine comes true....

Days

2011-11-09T22:49:00.004-06:00

Below is something I wrote the Day after James' funeral. I still keep a journal, and this is what I wrote that day. I was looking over it tonight and one line struck me. Back then, almost four months ago, I wrote that I didn't have a time table. When I read that tonight I started to wonder if that was changing, if in the intervening months I'd decided that there was a time I was going to allot to this, the same way I might schedule a meeting or plan a budget to buy a new car. I've always found a certain degree of comfort in schedules. I like to know when and where I can expect to deal with something and prepare myself accordingly. When I read this tonight it struck me that I still, after all this time, have no timetable. I can't even schedule when or how I think of James, whether it's smiling when I stumble upon a giraffe walking stick we got from the zoo, or freezing when I open my trunk and see the base of his car seat still there. For some reason I was fine taking it out of the backseat but couldn't bear to take it out of the trunk. So now I just don't use the trunk. I don't even have a timetable for when I'm taking that out, let alone when I'm going to deal with everything else.

What I am beginning to realize is that perhaps this never ends. Perhaps I'm not going to "get over it." Perhaps I'll just live with it and manage it. I don't necessarily mean that in the sense that I will lead the rest of my life morbidly depressed, but in that James and his loss are never going to fit into a neat, compartmentalized box in my life. There is never going to be a file I can index and store for this, it's always going to be there, the good and the bad. I've come to believe this isn't necessarily a bad thing. James was an amazing gift, and it was the highest privilege I have ever known to be his father. I don't want a timetable for getting past that.

The picture is a James "self-portrait" I handed him my phone with the camera on and let him play with it. He took a few select shots of himself on accident and this was one of them- he's trying to put the phone as close as he can get it so that he can get at the baby in the picture. I loved watching him do that, and I like to remember things like that, the way he played, his objectives. I don't want to forget those things.

Thank all of you for your continued support and prayers. It's been very comforting over the last few months to hear from all of you.

Day Twenty Nine

Today marks either the first day of the rest of my life or the last day of the best part of my life. I suppose it's a question of perspective. After James' service yesterday, family has slowly migrated home, back to their jobs and their lives. Friends have faded, though still supportive, the sense of urgency fades. James is buried, commended to the earth and claimed in faith. All that remains from now on is what we do with ourselves. We are left to grieve, to mourn, and to recover as best we can.

I wish I could say that I spent the first day of this new period well, meditating on James life or reflecting positively in some way. God knows I would have liked to. Instead, I did virtually nothing all day. I woke. I dressed. I showered. Each act took too long, a little more time than you might expect. Forty minutes to get out bed. 20 for the shower and getting dressed. Pauses were long, and frankly I completely lost track of time on several occasions. Focus comes irregularly, and all too often sharp on the wrong images. The background picture on my phone. The cluster of toys on the hearth, still unmoved. We haven't gone through anything yet.

I went to dinner with a friend I'd scheduled yesterday. Thai food, drunken noodles with a touch of spice but nothing overwhelming. If I hadn't scheduled the dinner yesterday I seriously doubt I would've done anything at all today. And maybe that's ok. Maybe there is no time table for what I'm doing here, maybe there's no way this ought to look. Kara and I both love schedules, exact timetables we can rely on and trust completely. I am obscenely punctual. But we can't schedule this. And so I lose days in the cemetery, days I never even knew were there. It's humbling, and incredibly enlightening at the same time.

Holiday Ornaments for a Cause!

2011-11-07T13:52:00.000-06:00

The sweet people at Personalizedfree.com contacted me because they have been reading about James and praying for us for several months. They wanted to be able to help donate to James's fund, and came up with a great way to do that!

Personalizedfree.com is a small, family-owned and operated business that sells the most adorable Christmas ornaments.

And they have offered to donate 10% from every sale to James' fund with the code "JAMES" entered at checkout!

I love this pregnant momma ornament! Wouldn't that be such a cute way to tell family that you are expecting?

Or to give your parents and in-laws this ornament about their new status?!

My mom bought my brothers and me an ornament every year, depending on what we were "into" that year. And then when I got married, she gave me all the ornaments so that my tree was decorated. I know so many little boys that want to be firemen!

Or lawyers!

And the realtor is just so cute. This would be a thoughtful gift if you bought a new house this year to send to your realtor!

I know my teacher friends would love this ornament. And it beats the 15 coffee mugs they normally get at Christmas! (Not that coffee mugs are bad...I just always think teachers probably get a ton of them!)

The backhoe is my friend Jean E.'s son, Garrett's, favorite. He LOVES backhoes. He is so cute when he points them out.

Personalizedfree.com really has an ornament for everyone! The ornaments are all personalized by hand so everyone is unique.

The details:

Go to personalizedfree.com

Enter the code "JAMES" at checkout

10% of every purchase will go to the James Camden Sikes fund

Birthday

2011-11-05T15:46:00.005-05:00

I meant to post this last week. I did not. Here you go.

It wasn't supposed to be like this. There was supposed to be more. A party, a cake. One James attended not in his 37th week but his 52nd, full of life and vigor. He was supposed to smile, play, and even if he didn't know what was going on, know it was all about him. He never stirred during the party we did get to have for him, poor baby. I often wonder when the exact moment he slipped away from our being able to reach him, even though I know it happened slowly, with no anticipation. I believe he could hear us at the end I just wish he'd had a way to let us know. Pouring over my pictures of him I stumbled upon what I think is the last picture I have of him playing. He's munching on a mum mum bar, his favorite, back arched in that typical way of his, always striving to move more, do more, and see more. He died a week later.

I wonder what he would have looked like, if his hair would've gone blond or settled in the middle. If eyes would retain their vibrant blue or shift to another tone. If his fangs would've become crowded with more teeth around them. I have so many "what ifs" that I cannot begin to list them. Each moment represents an independent one, all dependent upon the same event. To use a legal term, they assume facts not in evidence. There is no evidence of my son now, only what I speculate might have been. It is a poor substitute, because James from the moment he was born was a terrific surprise to me. I was never sure exactly what fatherhood entailed and if I am honest it did not come to me immediately like motherhood did to Kara. It took time for the reality of it to sink in, for the love I felt for my son to translate into a fundamental change in who I was. Just as I was getting the hang of it, I stopped being a father. I don't know what to do with that. I sympathize when others talk about their babies but the experiences I can share run out before walking and talking.

Today brings everything to the surface. Thoughts that I might otherwise keep at bay with a few more hours at work or a book come rushing to the foreground, because I am not doing what I should be. Looking at the difference between last year and this year invites a comparison that cannot be avoided. At 10:20, James was born. We were in the ER and I was wearing scrubs (I still have them, I stole them as a memento from the hospital). Kara was getting her second hit of morphine and ascending to a higher plain, and the nurses dragged James over to weigh him. He was screaming, just like he should've been, a relief after all the trouble they had keeping his heart rate steady. All anyone could talk about was his hair, thick and matted onto his head. He looked just like Kara, her nose and cheeks. I wanted to hold him but they kept running tests, so I didn't get a chance for a few minutes, minutes I spent anxiously videotaping, sure we'd share it with our embarassed son twenty years later. He was perfect, just as he should have been.

This year, 10:20 was quiet. No screams, no babies, no anything. Just more stillness. You forget how loud babies are, as they have no sense of propriety. They are delightfully uninhibited and free as adults never are to scream, cry, and laugh, often all at once. James was just like that. In his absence, the silence is all the more obvious. Stunning, even.

So what did I do? We went to a DAYL event. I wanted to stay longer but I couldn't. It was sweet of them to honor James, and the event itself was a lot of fun. I encourage all of you with families to go to the zoo, it's a great place to take a family and there's a ton of things to do. Jamie is growing, though she has yet to master the art of eating grass- it's awkward enough that you understand why giraffes prefer leaves. I'm glad the DAYL is doing more family stuff, I think it's healthy and lets you get to know people in a different setting. I went to the cemetery, of course. Balloons fluttering in the wind wishing a happy first birthday to a patch of dirt now nearly completely covered in grass. Despite myself I worry between the tears what will happen when I'm not around to clean up the balloons after they deflate. I cannot tolerate the idea of his grave appearing uncared for. I care. It is peaceful as always, but the stillness serves again as a reminder of how loud it should be.

Some days are better than this. I can get busy enough on something or get enough work in front of me that I'm occupied enough that I can push it to the margins. Some days I remember more of the good things, and the rest seems less important. I can function, laugh, joke, and enjoy life. Today was not one of those days. I couldn't function, couldn't tell you what I worked on all day the day before on or even let you know what I planned for dinner. I think I tried to put on a good front. I have no idea if I was successful.

It's annoying because I don't want James' anniversaries to be marked by loss. I don't want to look at the 16th every month and do a mental calculation of how long it's been since he died. I don't want to take each 29th and do a mental calculation of how old he should be. I don't want to dwell on it. I want to think of as he was- the joyful little boy who lit up every time you walked in the room, and couldn't get enough being thrown in the air. I want to remember his little cackle when the dogs played in front of him, not the labored sounds he made as he struggled to breath near the end. I don't want that to be the most important thing about James, because there are so many more important things. His smile was worth all that alone. I don't always get what I want though. Sometimes I can't help myself, even though I want to. Sometimes I can't be more than mad. Maybe tomorrow. Maybe next year. But I'm not giving up on someday. James wouldn't.

Happy Birthday son. We miss you.

Thank all of you for your support this week, it meant a lot.

Halloween

2011-11-01T00:47:00.000-05:00

This is the only picture I have of James from Halloween last year. One of my many regrets is not dressing him up in a costume last year. I know it's not really important, but I now I wish I had.

I didn't expect today to be so hard. Really, I thought Saturday was going to be the worst day. And today was just really bad, and maybe its because I didn't expect it. I barely moved from the couch today. The only times I got up were to let the dogs in and out.

I don't even know what I watched on tv, though I am sure it was on all day. I really don't know what I did. I know I kept getting on facebook and seeing the (what seems like) hundreds of adorable kids in their adorable costumes. And with each lady bug or monkey I just sank lower and lower. Sometimes I think I should just cancel my facebook completely! I tend to compare myself to other people alot, and it really only makes me feel worse about myself sometimes. Does that happen to anyone else?

One of my classes got canceled, and so I was home during the typical Trick or Treat time. I was really planning on being gone so I didn't have to deal with it. I hadn't bought any candy or decorated. So I was the Grinch this year and sat on the couch, lights off, shades drawn, with no candy to give out.

I think I should have known that I was upset about Halloween. A few months ago, some people at church had asked me to help chair our Fall Festival. I just couldn't. I knew that it was the day after James's birthday, and I just couldn't bear to see all the kids in their costumes when I never had the chance to even bring James to the event. And as it got closer, I couldn't even bear to hear about it. And I know it's terrible, but I just can't deal with it. I didn't even ask my friends what their children were dressing up as.

Some days I just feel like I don't function at all. Maybe if I had somewhere I had to be today it wouldn't have been a total loss, but the days I have no plans seem to be the worst. Sometimes I can just sit and stare for hours and accomplish nothing. Tomorrow I have several things I have to do, so hopefully I can make myself go do them.

Tomorrow is All Saints Day. I've never even thought about the day, other than in Spanish class in high school when we had "Dia de las Muertos" parties. I read somewhere that All Saints day is supposedly when some people believe that the space between Heaven and Earth is closer, and therefore more signs from loved ones are seen. Well, I'll be honest, I would love a sign. What I would really love is James to appear and tell me that he is ok- great even- and will just play with his angel baby friends until I get there. Maybe he will. I have to hope that maybe I one day I will get a sign.

Sometimes life is funny. If you had told me 6 months ago that I would halfway believe that on November 1st the barrier between Heaven and Earth was thinner, I would have told you that it was all bull and you are crazy. Now I think I just grasp at anything that could give me the chance to see James again.

Like I said before, nothing in my life is black and white anymore. It's all gray that might possibly make me slant towards the loony bin. Even typing it, I'm thinking "Who the heck would believe that?!"

So I hope everyone had a good time with their little ones today. But tomorrow, on All Saints Day, would you mind saying a little prayer for my little one?

Winston and Maggie

2011-10-31T01:34:00.000-05:00

First, thank you so much for all the kind comments, texts, emails, and facebook messages celebrating James's birthday. I am so thankful that you all remember him and his birthday. I appreciate the fact that so many of you are celebrating his life. Thank you from the bottom of my heart.

So, yesterday has come and gone. Matthew and I went to the zoo and saw Jamie with some sweet friends. I know most of you are sick of hearing this, but I have the greatest friends. Truly. Some friends I have made this past year, and others I have known for 15 plus years and everywhere in between. They are amazing. And then my Mom was in town also, and she and I went out to Denton to take Jamesie some balloons. So thankful for my Mom who lets me cry and be angry and then be happy and sad all within a 2 minute time-frame.

I've been a little preoccupied with myself lately, and it hit me not only did I lose my only child, but my parents and Matthew's parents all lost their only grandchild also. My mom went from being GiGi- which she still is to the doglets- to not having a grandson to play with. James just loved my mom so much. Between my mom and my brother, they could have James laughing when he was in the hospital in no time.

This is my mom and James, with James laughing at my brother. I think he was doing funny faces or something!

James and Maggie. Kisses from Maggie are a rare occurrence.

James and Winston. Winston gives everyone kisses.

Speaking of the dogs- I feel like I should talk about them for a minute. The pugs are Winston, who is 6, and Maggie, who is 4. Matthew bought me Winston for my birthday our senior year in college. I adopted Maggie in 2008 right after Matthew had left to go to Albuquerque for the summer to do a clerkship. In retrospect, it was terrible timing, and the summer of 2008 I used to refer to as the worst summer of my life. And then Summer 2011 happened and it pales in comparison.

Winston and Maggie are best friends. Winston used to be the alpha dog, and then Maggie came and took her rightful place. He was never that great at the alpha dog part anyway- he never had a chance. Winston is definitely show-quality, slightly flamboyant, possibly autistic(but definitely high-functioning) and has a love of large, black, male dogs. Seriously. Maggie on the other hand is loud, has hip dysplasia, territorial, and is a tease. They are a lot like Will and Grace.

So when I was pregnant, I worried about how Winston and Maggie would take a new baby. Maggie barks if any baby cries on the tv, and Winston's "spot" is my lap. I bought a baby doll and practiced holding it and keeping the dogs away. It didn't work. But as soon as we brought James home they settled down. And the bigger he got, the more they liked him.

And oh, how James loved the dogs. He thought they were hilarious. This video is one of my very favorites. You have to watch it. And I never say that. But it's just so adorable.

So I miss being able to play with all of them. They were such a good team. And now I don't even know if Winston and Maggie realize he's gone. I know on some level they must know. They don't go into his room ever, even though the door is open and they used to spend so much time in there. Winston used take any opportunity to take a nap in the rocker. It's just so strange to me that they don't even walk in there from time to time.

And I feel like I can't explain to them what has happened. Just like I couldn't explain to James what was happening. So I'm at a loss of what to do. Winston has regained his place on my lap. Maggie, who had stopped barking at the babies on tv, now barks at anything and everything. Maybe they know, but don't even know what to do. I guess that's how I feel, so I can't really blame them.

Happy Birthday, Baby

2011-10-28T23:05:00.001-05:00

Precious Baby,

This is not the letter that I thought I would be writing a year ago. Oh how I miss everything about you- your sweet smiles, your hilarious laughs, your high-pitched talks and hungry cry. I miss your perfect little thighs with hardly a chunk on them. Your tiny toes that we used to make Valentine's Day cards.

I hope they are taking care of you in Heaven. If I thought for a minute that they weren't I would just hop on the next bus up there. I'm so sorry that I'm not there to rock you or tuck you in at night. Do they know that you sleep in a sleep sack? A cotton one in the summer, but now it's gotten cold so hopefully they have switched to your fleece ones. Surely they know that, right?

I hope one of the many mommies and daddies have made you a cake. And they hopefully made a tiny smash cake for you. Oh how I wish I could see you smash that cake! I remember at your friend Chloe's birthday party I let you try a little bit of cupcake even though you were only 7 months old and I shouldn't have. You loved trying that frosting! If I had only known what was coming I would have let you eat the whole thing.

I wonder if you are walking now- or in Heaven were you already able to walk when you got there? You were so mobile. And always so ahead of your milestones. I thought surely you would have been walking well before you turned a year old. We used to "walk" around the house all the time. With you holding my hands, and me standing above you. You thought it was so much fun to be able to get all the way down the hall to your bedroom. So fast you were!

I haven't moved your toys. Your room is exactly the way you left it. I just keep hoping that maybe one day I'll wake up and you'll just be here again and everything will go back to normal. There's still so many clothes in bigger sizes that would fit you now. It's all here, and the only thing missing is you.

I'm surprised every morning when I wake up. I always think that surely my heart has broken so much that God decided to take me in the middle of the night to be with you.

I miss you so much James. I can't believe that we aren't spending your birthday together. The first of what was supposed to be a lifetime of birthdays. I went today to order you some balloons- One big Happy First Birthday Balloon and 8 small balloons for the 8 month birthdays we got. I don't know what else to do. It seems silly to get you a cake. I guess I'm hoping that the balloons will fly high enough tomorrow that they will somehow reach you.

I hope your angel baby friends have fun at your party. I've met so many of their mommies that are still here. We all miss you so very much.

Happy Birthday, sweet baby. A year ago, my life changed in the most remarkable way. I got to meet my favorite person! And for better or for worse, I am so thankful that I got to be your Mommy. You are worth every hour of labor, every stitch across my stomach. You are worth every tear, every smile, every cry. Even if you had never so much breathed one breath on this Earth, you would have been worth it. And the fact that I got you for 8 and a half months? Never has anyone been so lucky as I.

I miss you. I love you. I can't wait to see you again. And the next time we see each other, we'll never have to be a part again. Happy Birthday, love of my life.

Jealousy Issues

2011-10-25T23:33:00.000-05:00

Ok...so you all like me because sometimes I am totally honest, right?

I'm pretty jealous right now. I'm jealous of all the people who have perfectly healthy babies. I'm jealous that they get to wake up in the middle of the night to their cries. I wake up in the middle of the night to emptiness.

I'm jealous of the people who complain about their children. Who are so tired of their children asserting their independence and personality. And I know it has to be hard to be a parent of a 2 year old. But I would give anything to know what would have set James off in a temper tantrum. And I know it's silly, but I wonder what it would have been. Would it have been what he wore? Or a special toy? Or shoes? What would he have been particular about?

I'm jealous of the people who get to blissfully unaware of pain. I know everyone has their share of problems, but there are always people you meet who just seem to have perfect lives. They have perfect jobs, perfect kids, and it all seems to be great. How do you get that life? I guess I wouldn't even know what to do in a life like that.

Ok- and I told you I am on a roll with the jealousy- I'm even jealous of breast cancer research. I know, weird. But I was trying to do some research on rhabdoid tumors and whether they could be caused by an epigenetic response (basically if something like nutrition could cause a change in the proteins on top of the DNA that would cause the change in the gene). There is so little research. So then I was trying to do some research on breast milk and whether that has an effect on your DNA. I searched probably 15 scholarly journals for "breast milk". Not a single article or study came up about children. However, thousands came up about breast cancer. And I don't think there shouldn't be research about breast cancer- I just am jealous that we know so little about AT/RT and I wish we knew more.

I'm jealous of people who get to have normal lives. Who get to go to Gymboree. Who get to play with their kids. Who get to hear "I love you Mommy", even if it is few and far between. Who get their own version of "Jamesie kisses".

So I was watching the Little Couple tonight (Disclaimer: I watch terrible reality TV. It's a problem that has unfortunately gotten worse over the last 3 months.) and they were talking about doing genetic testing on the 2 embryos that will be transferred to their surrogate. They didn't want to go through a pregnancy without a good chance that their child(ren) would survive.

And I know the pain that happens when you lose a child first hand- its awful. And I'm not here to say whether deciding that is right or wrong for them. But knowing what I know now about what all would have happened, I can't imagine my life without James a part of it. Even though he's gone, he is still very much a part of my life. But then, also knowing what I know now, I would hate for him to have to suffer. As a parent, you never want your child to suffer.

Maybe this experience has shown me that every decision is not always black and white. Most are shades of gray.

I know I am so random. This week is really rough. If you have an extra prayers, I would be forever grateful if you would send them my way.

Last year when the Rangers were in the World Series, James was 1 day old and we watched the game in the hospital. The weekend he was born we watched the Rangers, the Baylor Bears, and the Dallas Cowboys. We watched so many sports in the hospital that I even thought at the time that this year we might have a "Tailgate" themed party and just have football on all over the house.

Oh, how I wish we were having that party this year. That we were the ones blissfully unaware of just how painful life could be.

Looking for the small blessings

2011-10-21T01:42:00.001-05:00

Well, it's clear I'm not sleeping well. Since I typically start blogging about 1:00 in the morning, you can tell I'm not sleeping!

In fact, I think it's pretty obvious I'm not doing so hot these days. But- I'm trying to be honest about it. My friends know- we're calling it my funk. One that I can't seem to get out of. I am so thankful for sweet friends that allow me to be in a funk. And accept me how I am. And understand that it's ok to be in a funk that it (hopefully) will not last forever.

My aunt told me a few weeks ago that she read in a book (she thought it might have been Elizabeth Smart's book) that Elizabeth began to look at the small blessings in her life. And little by little she felt better. I've been thinking alot about that lately. Currently, I am up to being thankful for coffee. That's about as far as I get.

So I am way behind blogging about all the ways that people have been blessing me- I have so many half-written posts, but one thing happened last week I have to share. On Friday I went to Waco to visit some of my old (former) coworkers. (That was for you, Candice!) On my way to Waco, I stopped by Hamilton, TX. My sorority sister, Ashley, and her husband own a monument company. They are so kind, and are just being so supportive and understanding throughout this whole headstone process. As Matthew said earlier, it's not something that you even conceive of doing until you have to. I'm so thankful to know people who can guide us so lovingly through the process.

After stopping in Hamilton, I drove to Waco. I, of course, got behind some army convoy on a 2 lane back road, and it ended up taking me FOREVER to get to Waco. Best laid plans, right? I was so excited to get to Waco because the day before, I received a package. An anonymous friend had given a brick in James's honor in front of the Bear Habitat.

So when I got to the Bear Habitat (formerly the Bear Pit for all of us old people), I was greeted with this:

When I received the package last week, I probably cried for an hour. I was just so overwhelmed with gratitude. Unfortunately, I'm not allowed to find out who it is from! But I am so glad to have a little piece of Jamesie on campus. Baylor's campus is one of my absolute most favorite places in the world, and James would have loved the bears.

It's funny, because I've been thinking about putting that exact phrase on his headstone (or on a bench we are going to put near his grave). I know I'm a little obsessed with that poem, but I just love it. Nothing else seems to sum up how I feel.

Once again, I am so thankful for friends in Waco (and other places!) that can hang out with me even through my funk. I just think that it is true, you are bound to meet incredible, amazing people no matter where you go.

I'm also thankful for school. I honestly don't know what I would do if I didn't go everyday. It makes me (halfway) function, which is good. I'm learning a ton, and my classes are going well. I'm starting to think about the MCAT which is terrifying. It looks like I will take it in May, which doesn't seem as far away as I thought it was!

Ok so maybe I've gotten a little farther than coffee on my blessing list now. Thanks for going on this journey with me- right now it's an up and down kind of ride. And hopefully I don't mean that in a bipolar or schizophrenic way!

And to close, a picture of my baby. A terrible quality cell phone picture, but I love it. He is almost exactly 5 hours old in this picture. I love this little wrinkles. Such a perfect, sleeping baby. It was like once I got him on my chest, he knew that's where he belonged. And I knew that was where he belonged. Heart to heart.

Memorials

2011-10-17T21:49:00.003-05:00

Bahama Blue. Blue Pearl. Dakota Red. North American Mahogany. Finland Red.

They're the names of tombstones. Types of granite to be precise. Bahama Blue is wavy and a bit less lustrous. The others are dappled in a variety of colors from dark blue to pinkish red. They look a bit like the granite you might have in your kitchen, gleaming slabs of rock straight and upright, with a six inch base and an eighteen inch pedestal by rule. If you take the samples, you can wander the cemetery and look for matches. You'll find some. Flat grey is far and away the most popular, a faint shimmer distinguishing it from concrete. The lighter pink comes next, scattered amongst the grey. Less common are the darker reddish colors, dappled with more gray. Not quite red, more maroon. Perhaps one in twenty. Rarer still are the blues, perhaps one in one hundred. The waves of the Bahama Blue are particularly uncommon, we didn't see any. It's an odd sort of shopping experience, walking samples from monument to monument, trying to find a match. One group of four headstones in North American Mahogany contains an entire family, two boys and their parents. Only one has passed, a young boy about a year old. It seems odd that they wanted to bury his brother there as well, until you realize they were twins.

I never gave much thought to what my headstone would look like. I assumed my children would pick it out, along with my grave, sometime after I died. I never thought of picking colors, or had time to parse out the differences between ordering domestic granite or international granite. I figured I'd be past caring by then. I am 27 years old and until recently felt comfortable allowing a few decades before the question entered my decision making.

I never thought that Kara and I would ever have to make this decision for James. Even after James died, the reality of decisions like that always lacked context. You simply have no knowledge of the process. After walking around the cemetery for a bit before dusk, we settled in on one of the blues. It will take a while to get in. We have time to wait.

The reality of course is that all of these decisions become necessary. Despite my best efforts to protect it, the flimsy sheet in a plastic sheath providing James' name and dates to the public has faded completely, burned out by the sun and latent moisture. I took it apart and put in a new placard, his name and dates in my almost illegible scrawl. It won't last very long either. Ants made a home around the concrete base of the vase the cemetery provided for flowers. I killed them all, but they'll come back. The grass grows every week. Three weeks ago the runners were just beginning to reach across the bare ground. I thought about stopping them. I didn't want to believe it had been that long, I didn't want people to think of James' grave as an old one, something in the past. The wound less fresh than those of graves with freshly tilled soil. I decided against it ultimately, at least in part because I couldn't think of how I'd explain it to the groundskeepers. Now the grass is criss-crossing it, threatening to erase entirely the bare earth. James needs a permanent memorial, one that can withstand the sun and the rain, one the ants can't bury and the grass can't cover. I just realized I wrote "son" instead of "sun" every time in this paragraph. Go figure.

Part of the reason why is the same reason the grass growing bothered me. I'm worried that without something there, without something permanent, people will forget. That without some carved chunk of stone with his name and age etched into its side people won't remember that James Camden Sikes was there. That they'll forget about him entirely. That after I die, Kara dies, and everyone who knew him dies it will be as though he never was, and never mattered. I want people to know, even if the only people to see it will be people like me, shopping stone samples in the cemetery. I want them to see his name and age and wonder about him, think about him. I want them to wonder.

I remember as a boy going to visit an old family cemetery in Sikes. In a neat little row at the front were James Franklin (my great x4 grandfather), his wife Susan, James Warren Sr. (my great x3 grandfather) and his wife Sarah. Between them is Clarence Lester Sikes, a nine year old boy who died over a century ago. I remember wondering what happened to him, how he found himself there between his father and grandfather. A century from now, I'd like someone to wonder what happened to James Camden and James Matthew. I don't want them to forget him, I don't want the world to forget, no matter how infrequent the thoughts might be over the years. James was too important to forget.

On one hand I know that these thoughts are silly. No one is going to judge James' legacy by the color or the quality of the granite on his headstone. At the same time I find them very comforting. This is yet again something we can control, after so many things that we could not. Still, whatever words, inscriptions, or carvings I think to put on the stone won't be enough. They won't capture James' personality or his delightful smile. They won't carry the sound of his laughter. For memorials like that we must depend on other sources, on the people that knew and loved him. The people whose lives he touched. The stone is just a marker. It will never be a legacy.

Lord, Please take care of my baby

2011-10-16T01:32:00.000-05:00

Lately I have been thinking about the various prayers I have prayed over the last year. This time last year, I was (what I now know to be) 13 days away from welcoming precious Jamesie into the world. My prayer was "Lord, please let James decide that today he needs to be born. I am so ready to meet him, and you know that I cannot stand to be pregnant another day!" Or something to that extent.

The day he was born was scary. James was making D-cells and his heart rate dropped from 150 to below 60 bpms with my 5 minute long contractions. When the 20 ish medical people came rushing into the room to run me down the hall for my emergency c-section, my prayer was "Lord, protect my baby. Please just let him come. Please just let him be ok".

As the doctors introduced me to the NICU team that was there just in case, I prayed, "Lord please don't need the NICU team. Please just let him come to me."

And once he was here my prayer was "Thank you Lord. Thank you for a healthy, beautiful baby. He is my perfect blessing."

So my various prayers throughout the middle part of his life focused on his development, his happiness, that I could be a good enough mommy for him. That James and I would be taken care of, that we could get through anything. We had some rough spots over the middle to get through. But I was so thankful for him. He game my life meaning.

When James got sick, my prayers were, "Lord, please make my baby better. Please stop his stomach from hurting. Please let him get over this bug" And when I found out that it wasn't a bug, that it was a tumor, it was "Lord, please give us the absolute best doctors. Give us the best nurses. Please let them get all the tumor. Please don't let it be a rhabdoid". And then it was a rhabdoid.

So then I prayed, "Lord, thank you for allowing the doctors to get most of the tumor. Please let the chemo work. Please, please let the chemo work".

And then we never got to chemo. And so my prayers changed. Instead of "God, please heal my baby", they become "Lord, please take my baby. Don't let him be in pain anymore. Please don't let him suffer any longer than he has to. Please, just don't let him hurt anymore."

Looking back, I can't believe I prayed that. I know that it was the right thing to pray; I still can't fathom it. I can't believe that I was in a place where God receiving my baby was my hope and prayer.

So now my prayer is "Lord, please take care of my baby. Please let someone rock him when he needs to be rocked. Let someone play with him when he wants to play. Let someone love him as much as I love him. Please make sure he knows how much I love him. Please tell him how much he was wanted. And how I so much wish I could be there with him. Just take care of him until I can. Please."

Surely there are special people in Heaven that take care of the babies until their mommies get there, right? (And I know everyone keeps telling me to read Heaven is for real- which I did. And sorry to disappoint everyone but I hated it. No judgment- if it helped you, great.)

Sometimes I think about why some people get miracles and other people don't. And honestly I'm jealous of the people who do get them now. It's not that I don't want them to get their miracles- because I absolutely do- I just wish that James had gotten one too. I wish I had gotten one. I think it's just another part of life that I just have to accept- there doesn't seem to be a reason why or why not.

I didn't struggle with the Why question at first, but it is definitely something I think about alot more now. It was so easy at first to just say that sometimes things just happen and you have to accept them. But accepting them is so hard.

It almost seems harder now than it was during those days at the hospital. I think at the hospital I still had hope, I still had a purpose. Now, I feel purposeless. And when James was in so much pain, it was, in a way, easier to accept that he was going to go be with Jesus and he wasn't going to hurt anymore. I don't feel like I even had time to think about what life would be like without him here. What that would look like. What that would mean.

My perfect angel baby. He was taking a nap at the arboretum one sunny, Sunday afternoon. He was just so precious. So perfectly precious.

And so now I can look back and doubt every decision. At times I can block out the pain he was in, and just remember when he would laugh or smile at something funny. Or play the "Let's put my hand in Mommy's mouth" game. Or sing Baby Legs or one of our silly sound songs that we made up. And then it all seems so very cruel.

So I think the only thing I can hope now is that God is taking care of my baby. Surely, out of all my prayers, that will be the one he will choose to answer, right?

One hard day down, who knows how many to go

2011-10-10T15:32:00.001-05:00

Well, I made it through my birthday. I still feel so guilty for having a 28th birthday and James never had one. Maybe I will feel like that every year? I'm not sure. It's hard to think about spending another birthday without him. Or another day without him for that matter.

I keep seeing this commercial. It's for the American Cancer Society and it's Ricky Martin singing Happy Birthday. Makes me cry every single time I see it. (Maybe the part I should be crying about is that I actually saw Ricky Martin in concert...in Salt Lake City...with my 75-year old (at the time) grandfather. Random much?!)

I am really dreading the next few weeks. I feel like everytime I think about Jamesie's birthday, I have a slight panic attack. I just honestly don't know what to do. There is an event at the zoo that we will probably go to. And then I guess we will go to the cemetery? Last month on his 11 month birthday I took balloons to him. One of my friends' sons had a birthday a few days before and she had gotten balloons for his birthday. And it hit me that I had never bought him balloons. He was never old enough to get one at the grocery store, or at a store in the mall. So I had this overwhelming urge to get balloons and take them to him.

The balloons stayed there for a day or two. I don't know why I needed to give him balloons. Half the time I have no clue why I do anything. I just keep thinking about what I was doing this time last year. Last year I was huge and pregnant. I was nervous/anxious/excited/filled with hope. I was so ready for James to get here, and according to my count of when I wanted his birthday to be (October 3rd), he was already late. October 3rd I was full-term, so I thought that of course he might as well come early and see the world! Of course he didn't. October 23rd rolled around and still no James.

I don't know which is worse- knowing that I never spent July17th through October 28th with him, or reliving the time between October 29th and July 16th. Because I think about how this time last year I didn't even know him. I didn't know his sweet smile. His gorgeous hair. His laid-back personality. His love of the boobie. His preference to be fully-clothed as opposed to naked for the first 6 months of his life. How he slept through the night at 6 weeks old, and was fully swaddled until he started consistently rolling over at 3 and a half months old.

I guess I'm about to find out which one is worse. Living in a world full of daily James memories, or living with the days that there are no memories from that day.

I think accepting that this is going to be a rough month is part of it. I'm just trying not to fight it. It's going to be rough. And eventually it will be over. And then we'll move to the holiday season which is going to be extremely hard too. Sometimes the thought of everything that is coming up is just so overwhelming.

So if you'd like to make a donation to Jamesie's fund in honor of his Birthday, or if you would like to donate giraffes to children who need a smile, let me know! I have an exciting announcement about the future of Jamesie's giraffes coming soon.... for a sneak peak head here!

And THANK YOU again for just reading my random thoughts. Which they always are. I'm grateful for those of you who care enough to read my ramblings....and for some reason it really helps me to process things!

Time

2011-10-09T21:35:00.002-05:00

James lived eight months and seventeen days. That's 257 days. Today marks the one hundred eighth day since we were first admitted to children's. It is seventy seven days since he died. Life in the hospital was very brief relative to either of those periods, James spent just about twenty nights in the hospital between the time he first became ill and when he died, tucked into different floors and different rooms. A dizzying array of B6, C9, C11, PICU, C9, C10, PICU again. Tense days full of hurry up and wait, ventured opinions and slowly forming conclusions.

Sometimes, I still dream about it. I wonder if you would call them nightmares. It is the morning and I can't get James to wake up. I am begging for him to wake up, shaking him, calling his name, calling for help. No one comes. I go into the hall and make laps around the circuit. The nurse stations are empty, the on-call boards blank, without any of the cheerful flowers the nurses would draw. A mural welcomes you to the floor on each lap, splashes of color to break up the hospital's familiar pattern. Each floor has its own mural- the layout remains the same. No one is there, and a panic rises in me. I wake up, and still there is no one to help James.

The days pass with a different cadence now. When I make an appointment, I can be confident it will happen about when expected. There is a certainty that was never present in the hospital. The days are more regular and less varied. There is more predictability, but the surprises gone are about half and half. Bad surprises,like your son has cancer and needs an MRI today, are largely gone. The worst has already happen, there are no more horrible futures to contemplate. With them go good surprises too. Which of his teeth will come in next, what will his first word be? When will he walk? The watch for milestones ceases. There is simply much less to look forward to.

The days now have a regular, predictable quality. There is much less to update, and still less that is actually interesting. As much time as we spent terrified in the hospital, I still sometimes miss it. We still had hope. We still had things to look forward to with him. By its nature, the hospital is a place that suggests you still have options, treatments, hope. There is the opportunity for life however tenuous one diagnosis or another might make it. Away from there, here, is in many respects an admission that there is simply nothing left to be done. James is gone, and there's no hope of return in this life. I never thought much of heaven before. It seemed abstract to me, a reward without context. I still don't know much about it, but I know what I want out of it- James. I want to see my son again, and watch him grow into the man I'd hoped he would become. I now have context. There is hope in that, but an abstract sort, the kind that pales in comparison to the reality of you dead son's grave, or the crib sheets you wonder if you should bother changing, because of the dust that's gathering.

Today looked a lot like yesterday. Work, sleep, leisure crammed in the margins where possible. Tomorrow will look much the same. The days are more numerous but less important. I think of all the things I wrote in those daily updates, everything that happened. Some days I would write an entire update only to forget a full chunk of the day, hours and events that were sometimes the most important thing that happened. That time is compressed in my mind, a month that felt like a year. There is a huge divide in my life between before and after, and I cannot believe it. A few days after James died I remember I received a calendar reminder for some discovery deadlines for discovery I served a few days before James got sick. I remember looking at the note on my phone and just being shocked that 30 days ago my life was normal like that, and that 30 days later I was finished burying my son. It felt like much longer.

Some days are better than others. Some days I see the positives. The time we were blessed to spend with James, how honored we were to be his parents. He was our perfect blessing and we were lucky to have even eight months with him. Some days I am angry. Other days, I'm just trying to get through the day. Today was a good day. I found a set of James' newborn pictures in my desk. These discoveries are always a bit sad, but I like to look at his pictures and see him smile. He was such a happy boy. I couldn't have asked for anything more.

Thank all of you for your thoughts and prayers.

Late Night Thoughts

2011-10-04T01:18:00.001-05:00

Most days I think to myself, "How was I ever a mother? Most days I feel like I can't even take care of myself, so how did I ever take care of someone else?

I'm crying alot now. At the beginning (or the end, I'm not even sure what is the beginning now.) Maybe I just mean right after James died, I hardly cried at all. Now I cry several times a day. Sometimes in the car. Sometimes at home. Never in class, though there are several times that I have had to bite my cheek so hard to keep the tears from coming. You know what I mean?

Last week in genetics we were studying gene deletions. That's what caused the brain tumor.

22q11.2

This is a diagram of what Chromosome 22 looks like. (One part of the pair I mean). 22 stands for chromosome 22. q means the "long" arm of the chromosome. If it were on the short arm, it would be a "p" instead from the French word petite. 1 is the region, and 1 is the sub region. 2 is the band. Do you see 22q11.2? Do you see what a tiny part it is?

There are 1.092 genes located on chromosome 22. There are 32,185 genes located in all 23 pairs of chromosomes we as humans have.

I still cannot believe because of one tiny gene deletion my baby died. I can't fathom it. It still seems impossible. Out of the 32,185 genes that we know of, why did this ONE have to be deleted?! Seriously blows my mind.

Sorry for the genetics lesson. I just find this fascinating. Lots of cancers are caused my various gene deletions and mutations. Several brain cancers, some breast cancers and a host of other cancers can all be traced back to gene deletions. The gene deletions are usually tumor suppressors that make your cells stop growing when they are supposed to. The basic difference between a cancer cell and a regular somatic cell is that the cancer cell doesn't stop multiplying when it should.

So I guess I have been thinking alot about gene therapy and how do you stop genetics? It seems to me like you find a way to fix the genes, you cure cancer. Pretty much all cancers. Should be simple enough, right?

Ok enough about that. I feel like all my blog posts are my random end of the day thoughts that are swimming in my head.

This month is going to be a hard month. I always knew October would be hard. I keep getting this magazine in the mail- It's called like "First Birthdays" or something like that. I've received it 3 times now. Everytime I get it in the mail I get all upset. The other day there was a Parenting magazine, the First Birthday magazine, and a Pottery Barn Kids in the mail. Rough day.

My birthday is on Saturday. I remember last year I was just praying that James wouldn't come on my birthday- he could come any day but that day. Now I just keep thinking, if he had come early, (or on time), would I have been able to spend an extra week or two with him? Or would the tumor have taken him 2 weeks earlier? Or if he had never come out, could he just have stayed safe in my belly forever? Because I would gladly keep him there. I'd stay pregnant the rest of my life if that meant that no tumor ever came to get him. Which is crazy to think, I know, but it's that bargaining stage.

So now my birthday is coming and the last thing I want to do is celebrate. I want to curl up in a ball. No one could ever give me what I want. It's not possible. I want for my world to make sense. It would make sense if James was here, or if I was with him. Apart doesn't make sense. Apart isn't right. I want my baby. I miss this sleeping face on my chest, taking his morning nap. I miss feeling him breathe in and out, and making tiny little sleeping baby noises. I miss my precious baby in my favorite polo- the one I buried him in. This is what I picture when I miss him the most. Always in this little orange and blue stripe polo that matches the one I bought for his daddy several years ago. That's what I miss the most. The perfect, sleeping baby who fit so perfectly on my chest, so perfectly in my world, who made my life complete.

Identity

2011-10-02T23:50:00.003-05:00

Kara signed me up for these e-mails. They're called "grief share" and they are daily. The theory is that you will receive one of these e-mails for a day, 365 in total, and at the end of the year you will have learned something about your grief. Perhaps something about yourself. I am on day 11. I started late. I wonder when I get these e-mails what Day 200 will look like. I wonder about the day when day 366 comes and no e-mail arrives. Does that mean my grief has ended? Am I finished? Of course that's silly and not at all what even the e-mails suggest. I think they know very well that a year is arbitrary, in much the same way as a decade would be. Our eight months and seventeen days was. Numbers without meaning, timelines with no context.

Almost one hundred days have passed since I first posted in this blog "Day 1" before we knew anything about rhabdoid tumors, when all we knew was the white mass on James' MRI staring back at us, a frame with the title "Seven Month Old with Brain Tumor." The Doctor stumbled on the words when Kara pointed out the tumor. There was no prefatory instruction, just "Is that a tumor?" and "Yes." I remember how committed we were to not even googling rhabdoid before we knew if James had it. Even when he was sick, we had so much hope, and James was always so happy. Why shouldn't we have hoped?

They say it takes a million cells to show up on an MRI. I wonder all the time when that first cell was born, when something wrong first happened. I wonder if there was a subtle change I missed in his behavior, if there anything at all that should have let me know that MRI shot was coming. This is foolishness of course, no one predicts a rhabdoid tumor. I know that. I do not always feel it.

Today's e-mail, Day 11, reminded me of that. "Losing a part of yourself" was the title. A man whose wife died described that he felt like someone had sliced him in two with a samurai sword, that he didn't know who he was anymore. For me, the sensation is different. Less cut in half, and more hollowed out, as if someone took a knife and scoured my chest cavity, a neat little hole where the core of me used to be. The center is missing. The sensation is one of absence. Without James, free hours reappear. There is no impediment to working long hours on the weekends, no obstacle to hours of television that you never bothered to watch before. You could develop hobbies, if only you cared. All the time serves no purpose but to remind you why it's there.

I do not always agree with the e-mails. Sometimes they catch me at an off time, or I don't care for their tone. Today's though, fit perfectly. I do feel like I lost part of myself, in many ways the best of me. The e-mail says to trust in God. I am trying. I do not have the answers, but I'm trying. Ask me again on day 366.

I met several people this week who I did not know who read this blog. Thank all of you for your support, everytime someone tells me what James meant for them or that they prayed for him I am glad to know how much he was loved.

Dallas Association of Young Lawyers Day at the Zoo

2011-09-28T13:15:00.001-05:00

For all of our Dallas lawyer friends- this is a great event for you to attend! (I don't know if we have ever said, but Matthew is an attorney in Dallas. Maybe you guys have figured that out already. I honestly cannot remember what we have said about our "8-5" lives.)

The DAYL is having a picnic and day at the zoo and accepting donations to the James Camden Sikes Fund that day. October 29th would have been James's first birthday. Matthew and I are tentatively planning on attending- every day is sort of a case-by-case basis, but we hope that we feel well enough to attend.

It should be a perfect fall day to be at the Zoo and see our sweet (or ornery, but I still think she is sweet!) Jamie.

So if you are an attorney in the DFW area, feel free to mail in your form. And if not, don't let that stop you from heading to the zoo that day. I promise the DAYL members are incredibly kind, and won't bite!! :)

A Big Thank You to the DAYL for thinking of our James...we are so grateful for you.

Come Back to Me

2011-09-27T23:43:00.001-05:00

My last thought every night before I fall asleep is "Come back to me". It's the first thing I think in the morning when I wake up. At night, it's usually more of a desperate plea. That I can't bear the thought of spending one more day without my baby. Sometimes it's a quiet whisper, sometimes silent, but lots of times it's a cry in between sobs.

Please....just come back to me...one more day...one more hour. One last kiss. One last hug. One last swing. One last smile. Even though I knew the last time I did all those things would be the last, could they have ever been enough?

I know everyone will tell me that "James is in a better place" but that is the very last thing I want to hear. Although I know he is, the truth is, I want him here with me.

I still wake up in the middle of the night and walk into his room. I don't know when it will hit me that he's not in there. I still glance in my mirror when I drive, hoping to catch his reflection in the mirror that was in front of him. Neither are in the car anymore. The baby bjorn and the grocery cart cover are- I can't seem to move them. My back seat used to be filled with toys and diapers and outfit changes, just in case. Now its filled with school books. Such a short time it was filled with the baby gear.

I still don't understand how it happened. It's like I can't get my brain around it. And I just don't understand why it had to happen to my baby. To my James. A young girl in one of my classes told me yesterday that she was pregnant unexpectedly and they think she might be having twins. I mean, really God? She's going to have two babies that she doesn't really want and I couldn't even keep my one?

C'est la vie, right? Sometimes things just happen. I still don't think everything happens for a reason. And I know people are going to disagree with me, and that is fine.

The other day the Lifehouse song "Broken" came on my pandora- which was kind of random because I was on the Adele station and I don't think Lifehouse and Adele are that similar.

I'm falling apart,

I'm barely breathing
with a broken heart

that's still beating

I googled the song because I was wondering what the meaning was behind it. One of the band members said that he wrote it after visiting a friend who was very sick with cancer. And I guess that is why it makes sense to me.

Maybe I will spend the rest of my life thinking that...every night and every morning. Come back to me. For some reason I just keeping hoping that one day it will be true.

Wallpaper

2011-09-24T23:21:00.004-05:00

There is a picture on my- James’ iPad- of James smiling. It’s from his newborn shoot. There are two different pictures of him on the iPad. One is the smiling picture from his newborn shoot. He’s looking at the camera from his side and his eyes are wide open, mouth open, gawking at the lens. During the shoot we paused several times to try to lull him to sleep. The best, or most classic, newborn pictures are those of the sleeping, innocent child. They are designed to capture the child at his most innocent, before age and time wash away the wonder of a sleeping baby and leave you with a smiling child. James refused to sleep during his newborn shoot. We tried feeding him, rocking him, warm blankets. He knew better than to sleep, even at 11 days old. James didn’t have time to be that kind of baby. I think he knew that. He never napped much, he was always wide awake. His eyes were incredibly alert, just as they are in that picture. He always seemed so much more engaged than I thought a baby would be. Perhaps it is only that I was his father and I need reasons, explanations to provide some theme so I can justify things in retrospect. But I think it was more. The other picture on the iPad is the wallpaper picture. He’s smiling at the arboretum, sitting in front of the tulips, a hand outstretched to grab one. Joy came so easily to him, to my wonder and relief.

My Dad bought the iPad while we were in the hospital. James loved to play with phones, my Dad thought that the iPad would be something fun for him to play with during chemo. James had a tactile fascination for how responsive the touch screens were. He marveled at how easily he could manipulate them. The iPad was something we could use to entertain him during the hundreds of hours we’d spend in the hospital while James got his treatments. We eagerly loaded it up with every children’s app we could think of. Doodling apps, PBS Kids, Disney, Rattles, and more. We researched the “top” kids apps and downloaded them all in James' hospital room, liberally abusing the Hospital's free Wifi. We consulted the nurses for advice.

The apps mock me now. Eveytime I turn the iPad on to fire up hulu or check my e-mail, I feverishly scroll to the last screen where I’ve stashed all the non-kid apps. Past Elmo, the Christmas Rattle, and the Doodler James once used to trace lines across the screen. I don’t always make it. Sometimes I’ll be a touch slow, click on the doodle app and wonder that my son was once alive enough make the doodles here. I e-mail them to myself, over and over again, because I always want them at the top of my inbox, as if he just drew them the over day. If I spend all my time on James I won’t do anything else. I won’t ever delete those apps of course. I won’t do anything to materially alter the IPad, that’s inconceivable. It belonged to James, and is therefore sacrosanct.

The iPad is just one reminder. A symptom of a larger, intractable problem. A reminder of a hope, dream, and future I once had that will never be. No hours of chemo, no need to worry about ways to entertain him through long hours. No need to worry about infections. The hard work I spent studying the notebooks the chemo nurses gave us, harder than I ever studied for any exam, wasted. All of this made still more frustrating because I spent time on that instead of with him. All of these are reminders that there is nothing left of James to hold onto. The feel of his hair, the tenuous strength of his fingers grasping yours. All of that is gone, with his piercing eyes. There’s nothing to hold onto. I’m left with his newborn photo, James stubbornly mocking the photographer and refusing to sleep.

That’s not to say that there aren’t comforts. We have had a great many. James has left a legacy far greater than anything we dreamed possible. I am moved by the responses that his story has generated. Still, when I’m flicking through the touch screen to avoid laying eyes on the doodle app, I can’t help but wish I was reading a blog about someone else’s life. Someone else’s child, and not writing about my own. I would never wish what happened to James on anyone else. No one should experience this. I just wish it didn't happen at all.

As always, thank you for your prayers. They are a continuing source of strength.

James Week by Week

2011-09-20T00:47:00.000-05:00

I've added a new page called "James week by week". I totally copied my sweet friend, Courtney, and took a picture of James every week in the same chair until the time when he got sick. I've put the first few weeks up...and I'll add more as I am able to get through pictures! Sometimes it's hard to look at them for a long time, so be patient with me and eventually they will all get put up! I hope you enjoy :)

http://jamescamdensikes.blogspot.com/p/james-week-by-week.html

Just keep Swimming...

2011-09-17T23:05:00.000-05:00

For me, things are suddenly coming in to focus in random spurts. I don't know how else to describe it, but it's like most of the days spent in the hospital are a blur. I couldn't tell you what happened any day, other than that it started and ended. I haven't gone back to read what we wrote on those days- I just can't yet. But now at times, the blurred days came strikingly into focus. It's almost like a scene in a movie I'm watching, and I can see myself and James and the doctors and whoever else was in the room with such precision.

For example, I was driving the other day and for some reason the moment that the Neurosurgery PA came into our room and told us that it was possible that James had a brain tumor popped into my head. At the time, I had no idea who this woman was or why she was in the room. I had no idea that she was with the neurosurgery team, or that was a PA, or what her role was at all in the hospital. I had no idea that she didn't belong on B6 which is the first floor we started on. She had really belonged on C9, and that her being in our room signaled a drastic change in why we were in the hospital.

I had no idea about the relationship I was about to develop with her. I had no idea that she and I would at times disagree on James' treatment, or what procedures he was going to have. But watching this scene play out, it was like I knew all of this information in the moment. So watching it again, knowing the full effects of what was going to happen, somehow makes it so much more tragic.

I guess maybe in some ways it's like the part in Harry Potter where the old wizard (Dumbledore? Is that his name? Can't remember.) pulls the memory out with a stick and places it into the water-like substance that collects all the memories.

And then all of a sudden, the memory fades. Logically I know that very quickly after our conversation we were moved to the neuro floor. I know that they began monitoring Jamesie's heartrate and since it was so irregular that we moved up to the PICU even faster. And then later I remember our nurse, Simon, who took care of James almost every night in the PICU. I remember that the lights were turned all the way on, and even though it was so late at night. They were so bright.

Yesterday I went back up to Children's. I wanted to donate some basic toiletry items that I had collected to give to the social worker who was so wonderful to us. (FYI- those tiny bottles of shampoo and things that you get in hotels are amazing for hospital stays. They are small enough that they last for a few days and you can toss so you don't have to tote them around forever during your stay. I've begun collecting them whenever I'm in a hotel to donate back to the hospital. Little things like that make a HUGE difference when you come with literally just the clothes on your back and don't really anticipate making the hospital your home for the next month).

I also went to the child-life department to see if they could help me understand how to get my baby's footprints out of this mold. They helped, so that was good. It was so surreal being back there. People asked if I needed help finding my out. It was almost funny because that hospital was my home for a month. It's amazing how quickly it all comes back. Of course I can find my way around.

Our sweet social worker, Kelly, offered to page my favorite PICU doctor. I heard that he was doing research, so I didn't get to see him, but maybe next time. For some reason I have my favorites- which is terrible I know- but I just truly loved the doctors and nurses in the PICU. I definitely had my fair share of little battles with them, but I know that they have to desperately love what they do. They make such a difference. Maybe I'll become a PICU doctor one day. Who knows.

I also went by the hospice office yesterday to pick up a hand and foot mold they had done for James. I don't know why, but yesterday I got a little obsessed about having those molds. I know they are a little weird, but for some reason I just had to have them yesterday. In some ways I have stopped questioning my random spurts of energy. I think they are little moments when I am trying to gain some sort of control over my life. Or maybe they aren't. Maybe I psychoanalyze myself a little too much! :)

Oh- and I donated all the baby bottles yesterday too. Whew, I guess it was a weirdly productive day. I took them to a woman's shelter. I have no idea if they will use them or not. I had no idea where else to take them. They aren't technically "new" because each of them had been tried a grand total of once in my efforts to get James to take a bottle. I think I owned about 3 bottles of every type on the market. It was a huge bag.

I never have any idea what to label these posts. For some odd reason, the tune "Just keep swimming" that Dori sings to Nemo in Finding Nemo just came into my head. Maybe that's what the days are right now...Just keep swimming. Just keep swimming, swimming, swimming.

Forward momentum is always good, right?!

Two months

2011-09-16T20:56:00.004-05:00

Two months ago today, I woke up and knew that James would die. I woke up with the sound of his labored breathing in my ears and hoped it would pass. I bargained with myself even then. A few minutes on oxygen will get him on track, just a few. I won't turn the oxygen on all the way- I'll leave something in reserve for when it gets worse, because it's not the worst yet. I think the mask is broken. That must be why it's not working- I changed the tubing, that will make a difference. Small things, little deals that mattered to no one but me.

There was no bargain to be made though, no deal to be struck. Within a few hours I'd given up and turned the oxygen on full blast- the obnoxious whir that at first seemed so annoying completely faded into the background. After he died I couldn't get it out of the house fast enough.

This month went faster. The timelines are accelerating, especially as we insert ourselves back into the world at large, in roles that were suspended totally while we watched James. Even so, the world still seems to have lost its axis. In many ways, it's a question of relativity. Your child is the thing in your life by which the rest of your roles are defined- your world in many ways revolves around them and their needs. Your work feeds them and provides for them, your family is based around them after they're born, not your parents. Your relationship with your spouse is triangulated by them. Without them, the central narrative around which much of your life depends vanishes. The rest of the roles have to readjust themselves without a common point to fix themselves on. Everything suffers collateral damage, and the process of adjusting is colored all the while by grief. No matter how much time passes, it still seems to me on some days that it didn't happen, that it was all some sort of nightmare that I am almost certain to wake from. But that's just more bargaining. I'm not waking up.

So I wouldn't say it was a better month. Faster, yes. But better is also relative. James didn't die this month, so this month was relatively better than July. Thank all of you for your continued support and prayers, it is a great blessing to know that James is in your hearts.

Baylor Proud Post about James

2011-09-14T15:52:00.002-05:00

Baylor Proud, which is a blog that our alma mater Baylor hosts, featured a story on James recently.

Enjoy!

http://www2.baylor.edu/baylorproud/2011/09/dallas-zoo-newborn-giraffe-named-for-cancer-victim-and-baby-bear-james/

Helpful Comments

2011-09-14T12:13:00.000-05:00

Since my last post ended up being about things people say that tend to upset me, I thought maybe I should list some of the really helpful things that people have shared with me. And of course, grief is different for everyone, so by no means does this mean that every person who grieves wants to hear these things. It's deeply personal, so I really don't want to say these are exactly what you should say to someone who is hurting. But for me, they helped!
(These are from the perspective of the person saying them)

I love James. I love you. I miss him.
I'm so sorry that he died. I'm so sad and wish that it hadn't happened.
I'm keeping you in my thoughts and prayers.
Let me tell you about the one time James...
Acknowledging and remembering when hard days occur.(ie: I know today it has been 2 months since he died and I am thinking about you and James today.)
James is/was beautiful/perfect/amazing... (The tense thing still gets me. It all seems so fluid now. He is beautiful. He was beautiful. I still don't know what tense to talk about him in).
I don't know how you feel, but I'd love to go on this journey with you. Tell me how you feel and I would love to listen.
When you are ready to share, I'm here to listen. If you don't want to then we can talk about something else. And I recognize that the feelings change day-by-day, hour-by-hour, minute-by-minute so it's ok to feel whatever you feel.
You are not crazy. It would be crazy not to feel like your world has been turned upside down.
Never underestimate the power of a hug!

And of course these are not all of the great things that people have said or written to me. They are just the ones off the top of my head! And I am SOOOOO thankful for these comments. They seriously get me through the day.

Ok and how cute is the reindeer outfit? James was 7 weeks old in
these pictures, and I just love the cuteness of the socks too!

I am also so thankful that my dear friends have completely understood that everything changes at any given moment, and are so flexible with me and my moods. I have been blessed with amazing friends that know sometimes I need to cry, and sometimes I need to laugh. And none of them expect anything from me. No expectations. They are just here to journey with me, however long it takes. I really don't know how I got so lucky that I have incredible women in my life who truly go beyond the definition of true friendship.

So a big thank you to all of you out there for reading my ramblings! I know they are typically random....so sorry!

Received rather than Taken

2011-09-13T23:12:00.000-05:00

Sometimes I'm not really sure what I should write about on the blog- I feel like the times that I feel like writing are the times when I am the most upset. So I hate that all I write is depressing- so please know that I am not so depressing most of the time in real life! Or at least I hope not....

I went to a grief support group today. I'm not going to share about the other people in it for their privacy, but the leader said something that really spoke to me today. She said that we all need to decide whether we believe that God "took" our loved ones or whether God "received" them.

Wow. What a wake up call. I have definitely been needing an attitude adjustment recently. I firmly believe that we are able to choose our attitudes, and honestly I have been choosing a pretty bad one. Little things have been setting me off and making me spiral into a pretty mean and depressed person lately. Isn't it funny how one small, insignificant remark that someone makes can just ruin your whole day or week? I have been letting these little comments just take over in my head.

So I choose to believe that God received James into heaven. I typically get pretty angry when people tell me that "God just needed another angel" or "It was God's plan" or "God knew from the day James was born that he would die on July 16, 2011." Because in reference to the first response, God doesn't "need" anything. He is, by definition, God, and needs nothing from us as humans. Secondly, God didn't need to "take" James to fulfill some worldly plan to promote research or awareness or to make other people value their children. Those are great things that can come out of James's death, but they aren't the reason why he died. Thirdly, I just can't believe this one. I'll probably get alot of backlash for this one, and I know I am probably going to tick some people off, but I just don't believe it. Because if everyone has an expiration date written on them, than what is the point of life?

(I don't mean to offend anyone about these phrases- and if you have said them, I'm not calling you out. I would just avoid saying things like this in the future to anyone who has lost a loved one because I think the general consensus from people I have talked to going through this that these sayings tend to do more harm than good.)

My friend Whitney, from high school, recently said (in response to something I wrote) that she wasn't sure whether "Everything happens for a reason" or whether "stuff just happens", I don't know that answer to that either. I used to believe that in the end, things worked out the way that they are supposed to. But I don't know that it was true for James. I certainly don't know that it is true for children in the Darfur region of Sudan who go to bed hungry and see their parents killed before their eyes. I don't think its true for people who are murdered or die in car accidents- is that really how things work out in the end? I don't know.

Maybe because we live in a corrupt world, we all do the best we can until we make it to Heaven. And God receives us and maybe that's the end that works out. So maybe the attitude I should have is that In the end, we are reunited with our loved ones. The parts in between allow us to give light and make the time from when we are united with our Heavenly Father sweeter. I don't know, just my random thoughts tonight!

And as always, I know the pictures of James are random. These were taken at the arboretum in February when James was almost 4 months old. And the video below was taken when he was a little over 3 months old and he was playing with the piano in his crib. Gosh, he loved that piano. He used to kick that thing the entire time I was in the shower- which was great because I could take a shower and he entertained himself! Please ignore my horrible accent- Oklahoma + Texas = quality entertainment.

“Hope is the feeling we have that the feeling we have is not permanent” Mignon McLaughlin

Haze

2011-09-13T22:24:00.003-05:00

I still remember the first time the Haze descended upon me. You'll forgive me if I capitalize it, like a proper name, something of importance, which of course it is not to anyone but me. James had died less than two hours before. The nurse from the hospice, not out regular nurse, had arrived. Our regular nurse had a pending engagement with Harry Potter, a movie I still haven't seen for that reason. She told us about it the first time we met her, huddled in an ICU room and trying to absorb the fact that this woman would be the one who came to declare our son dead after he died in our arms. If Harry Potter did not interfere. I wonder if she knew then, sharing that piece of information with us as we were trying to talk about anything but, that we had very little time left. I wonder if she knew we had 72 hours give or take, at home with him after we left the hospital. I still remember the walk from the room to the car, James sleeping peacefully, never to awake. I miss even that. In any event, James died during Harry Potter, and a backup nurse came to meet James only in death. A friendly enough fellow I suppose, though I can't imagine what the circumstances call for.

He'd left to talk with the funeral home owner who'd come to pick James up in a minivan with a car seat in the front seat, as if James would ever have been allowed to sit in the front seat. For some reason, I don't remember why, we'd put James in his crib. We'd dressed him, an awkward process that I do not want to remember, but can't not. He was lying there and for some reason I was suddenly alone, just he, I, and the crib. I'd cried before of course, long jagged sobs with my father, mother, or uncle's arms around me. We'd sat alone in his rocking chair after, and I'd composed myself enough to tell him how desperately I loved him, and how I hoped he'd see lots of friends on the other side, that if he asked my Grandparents they'd take him to get a new toy. But for some reason I felt especially isolated in those moments with him, waiting for the funeral director to come back and take him, in perfect agreement with the hospice nurse that he was dead and didn't need the crib anymore, wondering if I'd like to carry him to the mini-van. In the end I did, because I carried him into the house, and I wanted to carry him out as well. I was his father. But I didn't even know where the van was going. I'd never gotten that far.

And then it hit me. A sudden, swift haze, an edge of unreality and isolation descending over the whole scene. The voices in the house, the dozen or so odd people gathered in vigil around my son's deathbed distant, indistinct voices. To this day I couldn't tell you who all was there, or how or when they arrived. A strange disconnect emerged between us, a Haze isolating me from the rest of it, the world beyond. I often respond appropriately, I am witty, functional, even effective, but the Haze comes now and then, and I'm right back where I started, alone in his room watching him as though he were sleeping in his crib. It's an odd sensation, a curious disconnect. It's not that I'm not there, I'm just thinking about somewhere else, and everything else is out of focus, as if I'm listening to them underwater or drunk. It's not all the time. Just every now and then. Small things. Checking the mail and all the bills are to James Sikes, even though both of the James Sikes I knew are dead and gone. My Dad is Jim and I'm J. Matthew. Ten generations and I'll be the last one. If only AT&T knew. The Haze strikes me, and takes a few minutes or an hour, whatever the case may be. Like a pall descended over everything, coloring the margins with grief and deflecting the day. When it happens though, I'm right back at the crib, alone with my dead son, and I still have no idea what to do next. I'm still working on that, some days the answers are better. There are comforts- Jamie the Giraffe, adorable as ever, James' fund, the hundreds, thousands of people who have been moved by him. I'm selfish enough that I'd trade it all for another hour of him laughing.

I miss him desperately and constantly, with a sense of urgency that is completely inappropriate to the situation. So I'll give a few more hours, a few more days here and there when I'm not too busy to the Haze, and in the end it will pass, as it must. Because time will not stop, and our moment at the crib has passed. I will pray, and hope God has an answer. Eventually perhaps, the Haze will pass. I don't ask for timelines anymore. I learned long ago there's no use in bothering.

Jinxed

2011-09-08T15:27:00.000-05:00

Sometimes I think that I caused James's tumor. Alot of times actually. I tend to blame myself when things happen, and so I naturally have come to think that something I did jinxed James.

When James was born, I created a facebook album called "52 weeks of James". I took a picture of him every week in the same chair to document how big he was getting. I stole the idea from my friend Courtney, who did it for her son Isaac (who is the absolute cutest little boy). I loved watching Isaac grow, and I thought it was just such a neat idea. At the time I titled the album, I had a nagging thought- Was I tempting fate? But I thought of course I would have 52 pictures in that album. One for every week of his first year of his (long) life.

I now go back and analyze those photos. At which point did his head start to get larger? Was it the camera angle, or was it the tumor creating the hydrocephalus? Did he have a headache beginning in this one? Did he constantly have a headache that I just missed?

People asked me (way before James got sick) whether I wanted more children. Most of the time my answer was that if I was so lucky to only have James, my life would be full. Sometimes I said yes, but I really believed that if he was my only baby I would be happy. I wrote before that I felt like my life was complete when he was born. So did I jinx him from the beginning? Did I somehow put all my hope into him and that's why he was snatched away from me?

Did I jinx him by making him my world?

Over the entire 8 months of his life, I kept repeating to friends and family that I was so fortunate to have a healthy baby. I knew that there were families all around the world that were suffering because their children were sick and there was nothing they could do. I said over and over again how thankful I was that James was healthy. Maybe if I had never uttered those words he wouldn't have gotten sick.

Alot of people have emailed me telling me how James has affected their lives. I'm thankful that since I can't change what has happened, that some good has come out of it. But I would trade it all in a minute to have him back. The truth is that I was perfectly fine with him not affecting anyone's life. Anyone but mine that is. And selfishly I wish that the whole world never knew him and that this afternoon we would be outside in the yard swinging instead of me sitting on the back patio writing this blog post.

I opened his closet this weekend and saw the clothes hanging that I bought for him last spring. There were all far too big for him- I was buying in advance for the fall season while the cute smocked clothes were on clearance. There's an orange and brown pumpkin outfit. A green "Gone Fishin" outfit with a little reel and line hanging off of it. A Christmas outfit similar to the one he wore last Christmas so that this year's picture would match last year's. The tags are still on- I hadn't even washed them with the huge container of baby detergent that still sits on my washing machine.

I don't know why on earth I bought so many clothes for the future. Clearly I had no clue about what was going to transpire. Maybe I did jinx him by buying outfits for the future. Stocking up on diapers that I have since given away. Buying in bulk baby shampoo and baby wash. I just never thought that there would be a time that it wouldn't be used.

So the guilt sometimes just eats me up. I don't know if it's normal to blame yourself or not, but I definitely do. When I get to Heaven, maybe God will have the answers for me as to Why. I just hope that me taking James for granted wasn't the reason.

Fox Channel 4 Story

2011-09-08T13:00:00.000-05:00

The Zoo sent me some of the actual news clips so now I can embed them in the blog! Here's the DFW fox story.

More about Jamie the Giraffe

2011-09-06T16:24:00.000-05:00

Well, I know that Matthew told the story of what happened Thursday, but I thought I would give my two cents as well.

My sweet friends at the press conference

First, let me express how incredibly grateful I am to all of our kind friends, friends of friends, family, blog readers, and complete strangers who worked so hard to fill out so many forms! I am in complete and utter awe about the amount of forms that were mailed in to name "Jamie" after James. I cannot thank you enough for taking the time to do this. It is so heart-warming to think of all of those who thought about James to do it. I am seriously just overwhelmed with gratitude.

Matthew and I with Scotty Landry,
the CEO of Make a Wish of North Texas

Secondly, Michael Meadows, who is the CEO of the Dallas Zoo, is one of the most compassionate, kindest men I have ever met. He and I had the opportunity to speak a few times during this process, and he is nothing but gracious and warm. I think you can learn so much about an organization by whom they choose the leader to be. He is such a positive person and you can really tell that he treats every employee at the zoo with so much respect.

So Friday night, after 5:00, I received a call from Michael Meadows telling me the good news about Jamie the Giraffe. I think I was in complete and utter shock! I had no idea that they would deciding the name that soon. And then he told me that the winner of the trip had decided to donate it to Make a Wish so that a child with cancer could enjoy a vacation with his or her family. Jeff Fehlis at American Airlines made that possible, and I was over the moon.

Gregg Hudson, the Zoo's Executive Director unveiling the name

I don't know how I got to be so lucky that I am surrounded by the salt of the earth on a regular basis. One reporter asked me how I felt about the winner of the trip donating it to Make a Wish. I think my only response was that I wasn't surprised- throughout this entire process I seen the great kindness of people. People's generous hearts have been so consistent to us during this process, that I can't be surprised by their very goodness anymore. I am so thankful for it and this whole process has, in a way cemented my view that people are genuinely loving and good.

I wasn't supposed to tell anyone the good news- I called Matthew at work and he was elated. I did tell my family and a few select friends....I am terrible at keeping a secret. Plus, I knew that they would be so excited also! (Tip- don't tell me secrets. I am horrible at keeping them. Just FYI).

Gregg Hudson presenting us with a photo of Jamie and Momma Katie

And so that is how the announcement came to be. We went to the zoo this weekend and took my Mom to meet Jamie- she loved her just as much as we do! I feel a little obsessed with her. Would it be ridiculous for me to go every day to see her?! She is just the cutest thing.

With Dallas City Council Member Monica Alonzo

Giving interviews

Watching our girl!

Gregg Hudson, Giraffe handlers, and Michael Meadows

We got to meet her handlers on Thursday at the press conference. I asked about her personality- and the word the handlers used to describe her is "ballsy". Love it. She definitely rules the roost out there. Sometimes she just stares off into space and then will randomly start running around. She's a hoot.

I'm thinking about setting up a picture gallery so that if ya'll go to the zoo, then send me a picture with your little one and a giraffe. (Or you and a giraffe, or your friend/boyfriend/husband or dog). That is, if someone can teach me how to do it. Does that sound like a good idea?

And if you are in Dallas, venture out to the zoo and see Jamie the Giraffe! She's so adorable and definitely worth the drive! :)

The Top Floor

2011-09-05T20:33:00.003-05:00

There is a place in the hospital where I used to go to pray. Not quite in the hospital, but on the top of the parking garage. The top floor of the Green garage, to be precise, and to avoid confusion with the blue and the purple garage. I took the stairs from the place on the fourth floor where the walkways intersect, one headed to the purple garage and still more distant parking, the other to the blue. The Starbucks is squirreled away there between the walkway and the Bright building, where the outpatient clinic for the oncology department that James never would have gone to receive treatment if he'd ever become well enough to be treated. We toured it once, and I remember looking forward to a day when James would spend only his days and not his nights at the hospital.

I took the stairs from the walkways to the top floor of the garage in the morning, after I'd grabbed coffee, double fisting venti skinny caramel macchiatos past a steady stream of doctors and nurses migrating from the garages to the hospital, bleary eyed with coffee in hand. Some would nod to me in some sort of unspoken recognition, as with my uncombed hair and inevitably stained shirts I looked exactly like what I was, someone who lived at the hospital.

At the top of the stairs I walked outside of the glass vestibule and its chilly air conditioned bubble onto the bare concrete roof of the garage, towards the edge of the railing where I rested the cups of coffee. The view was- is- spectacular, the whole Dallas skyline. The building I work in, all the others, gleaming in the sun. It was warm as well, a welcome respite from the sterile coldness of the hospital. More importantly, it was quiet. Of all the memories that have stayed with me from the hospital, one of the most enduring is of how loud the place was. Even with nothing going on, the constant whir of instruments and the steady beeping of vital signs never ceased, there was never a truly quiet moment. No one bothered to park on the top level of the garage though, so I could always count on it to be silent.

It was here that I prayed, removed from the air conditioning and the noise. I looked towards the skyline or to the interstate and begged God to heal my son. Some days I cursed him. I never close my eyes when I pray, I just think and stare into the distance, as if God will suddenly decide to stare back at me. The ritual of closed eyes and bowed heads always seemed strange to me, even as a child I couldn't imagine why God, if he was everywhere, need only be deferred to when I paid attention to him. Eyes wide open, I'd look around at those in prayer, wondering at their devotion.

Prayer does not come naturally me. There are some people for whom prayer is effortless, a natural effusion of their thoughts, feelings, and devotion. I am not one of those people. Even as a boy I remember being bored in Religion class in Catholic School, patient enough to learn the words but confused and annoyed that anyone would want to sit and say a rosary- sometimes more than once. I certainly did not have that kind of patience. Did God reward repetition? Nevertheless, like any good Catholic, the words of the Hail Mary were often used as a prophylactic litany against all manner of fears, from bad dreams to a call from the principal's office. Now and at the hour of our death, Amen. So it was strange to me to make prayer part of a conscious routine, a regular stop between the Starbucks and the James' room, steaming coffees in hand. I do not remember the first time I went, or how the routine got started, or even why I decided I'd explore the top floor of the parking garage in the first place, it simply crept into my days.

I never stayed long there, never long enough for the coffee to go cold, just long enough to utter a few words and to pray for the life I wanted James to have, the one I hoped God was somehow preparing him for. The family I hoped he'd have, the teenage rebellions I hoped would be less damaging than my own. I remember thanking him when James' surgery was a success, and asking for more successes, small ones I hoped would build into larger ones. I ended each visit with the same request "Protect my family" I asked, over and over again.

Since James died, I have often asked myself why God didn't listen to me. I have wondered why he let my boy die. Why we lost him so suddenly, before we even had a chance to register at the outpatient clinic or anywhere other than hospice. James' time in hospice was even abbreviated, our schedule with the nurse never materialized, James died too soon for schedules. I have been angry.

The more I reflect on those prayers though, the less angry I am. There, alone, I could pour out my fears, my regrets, and my guilt. I could do something for James in praying for him that I never could do in the hospital, no matter how hard I tried, and just ask for him to be well. You can't ask a doctor that question- their concerns and your questions are more granular, what to do about the extubation or the meds James is getting. Wellness is part of a grander plan, one you are aware of but has very little to do with your day to day. Perhaps God didn't answer me as I hoped he would, with a healthy James. He knew of course, that James would never be well again. But he let me talk it out, there on the roof of the parking garage with my coffee. He let me bargain and wheedle, ask for miracles and cures. He gave me that place, away from the relentless action of the hospital to collect myself, and to talk to him. He did not answer my prayer literally, but he protected my family. He took James before he suffered through chemo, before spinal taps and IV drips of toxins became routine, knowing they would never work. He let me release all my fears, my guilt to him, so that I could care for James when he needed me most. He gave us all the support we could ask for, we were swarmed with people who cared. So I am not as angry as I was. I don't think I wasted my time at the parking garage. If anything, I am glad I went. I'm glad I prayed. Sometimes though, I still wish I'd received another answer. In a lot of ways, I'm still waiting for one.

CBS Channel 11 story about "Jamie the GIraffe"

2011-09-02T10:53:00.002-05:00

Dallas Zoo Names Giraffe After Cancer Victim

NBC Channel 5 Story on "Jamie the Giraffe"

2011-09-02T10:50:00.002-05:00

http://www.nbcdfw.com/news/local/Dallas-Zoos-Baby-Giraffe-Named-Jamie-128893238.html

Dallas Morning News story about Jamie the Giraffe

2011-09-02T10:47:00.001-05:00

Dallas Zoo giraffe named after young Lakewood cancer victim | Dallas-Fort Worth Communities - News for Dallas, Texas - The Dallas Morning News

Jamie the Giraffe

2011-09-01T21:55:00.004-05:00

Above is a picture of the sign that the zoo unveiled today announcing Jamie's name. Although we knew that we had a lot of support and we'd received a lot of positive feed back throughout this entire process, until we found out for sure we never quite believed that it would happen. Thank all of you for your support and for all of your entries! The Zoo received over 5,000 entries for the contest and 71% of the entries it received were for Jamie or some variation of James. I cannot express in words what this means to us. We never expected this kind of response. The Zoo told us they received entries from all over the country, and it is extremely gratifying to know that all of you were thinking of James. I can only imagine how thrilled James would be to learn that he had a giraffe named for him, even if I'm sure he'd be disappointed that it wasn't the kind of giraffe you could chew.

The Zoo invited us to the ceremony today where they announced the name and were very accommodating. We'd been to the zoo before, but in the morning it is largely empty and takes feels different, more open. The animals are more active, and the giraffes are everywhere. The Giants of the Savanna exhibit is interesting because, as I learned today, it is the first and only place in the United States where Elephants, Ostrich, Giraffes, Zebras, and Impalas roam freely together. It's really unique, something we had no idea about when we first brought James. We were able to feed one of the Giraffes, though Jamie stayed just out of our reach- she's a little short for the feeding exhibit yet. I'd wanted to go to the zoo before to see Jamie but I couldn't bring myself to, too many memories. The Jeep where we took the picture of James that used to sit atop this blog, the Penguin exhibit where he expressed such wonder at the animals flitting past him, and of course the giraffes. He loved their long black tongues, probably because they were so unexpected, he seemed especially impressed at how quick they were. Going back today was better, helped along as we were by the staff of the zoo. The event reminded me yet again that the joy in James' life matters more than the grief of his loss. The staff of the zoo was incredibly gracious to us, even letting me into the employee parking lot when I couldn't figure out how to work the gate, and we're glad we had the opportunity to meet them, from the CEO to Jamie's handlers who informed us that Jamie, like James, is far from shy. Jamie likes to run right at you, and she's not afraid to jump between the different ledges of the zoo- even if giraffes and jumping don't really mix. We felt very welcome.

We were also very pleased to find out that the person who won the trip- selected at random from all of you who sent in the name Jamie- chose to donate the trip to the Make a Wish Foundation. Thank you, whoever you are. Even though James was too young, and sick for too brief a time to take advantage of this foundation we hope that another family faced with losing their child will have the opportunity to make some beautiful memories in San Diego. Our last few days as a family with James, our last few hours, are memories we will treasure forever. It is fitting that another family get the opportunity to do the same. While we're at it, thanks to American Airlines for donating the trip. This totally makes up for the time you lost my luggage.

Grief, by its very nature, is a largely solitary experience. It occurs out of sight and mostly out of mind, stolen moments and tears in the privacy of your home, behind closed doors or tinted windows on the freeway. The direction that loss tugs is always inwards, towards memories slowly growing stale and experiences that cannot be recreated. The tendency is to dwell on these moments, and to remove external influences for fear that the new will drive out the old, and rob you of your memories. The narrative becomes repetitive, stuck in the minutia of what once was and reflecting upon what is not. Turning outwards often becomes a source of pain, a grim reminder of loss. The world beyond is lacking, and the absence of what you most want, of what you yearn for, becomes keen. It is absorbing, consumptive of your thoughts and time. It's a feeling that is hard to translate into words, because often it produces few words, just raw emotions that refuse to be properly articulated. Since James died, events like this, the response to his fund, and a hundred other things remind us that we are not alone, that looking outside does not need to be a source of dread. Knowing that James lives on not only in our hearts but in so many others is a reminder that our grief, and our son, are not without purpose. That is not to say that grief cannot still be lonely- it is- but that's not the whole story. It doesn't have to be. There is something more, a legacy that James left that exists beyond us. Thank you for that, and for Jamie. As always, thank you for your thoughts and prayers

Introducing....

2011-09-01T16:14:00.000-05:00

Jamie the Giraffe!!!!!!!

More details to follow :)

10 months ago

2011-08-30T11:20:00.001-05:00

James would have been 10 months old yesterday. I miss him so much. I literally woke up crying yesterday. I just want my baby back.

I know a ton of people who had babies within 2 weeks on either side of James's birthdate. I can't bear to look at any of their pictures. I can't even fathom James doing the things that their children are doing now. Some are talking. Some are walking. Some are eating real solid food.

I really just want my baby back. I started classes last night, and all I could think about was that I wanted to be home with my sweet boy instead of sitting in that lecture hall. I really wish I could change the past.

The last 2 weeks I have barely been able to stop crying. I guess it's finally hitting me now. For some reason, it seems that it is all getting harder and harder instead of easier. Maybe because the phone calls are less, the cards are fewer and the house is achingly quiet these days. I miss James. I miss him so much. I guess nothing is ever going to change that or take that away.

I guess this is what the new "normal" is.

Genetic Testing Results

2011-08-28T14:56:00.000-05:00

This post is really for those of you affected by rhabdoid tumors that find this blog. The rest of you might not be interested in the medical part of it- and that's fine! I'm going to try to explain the results as I understood them (and hopefully the genetics class that I am taking this semester will help me more in the future!)

Rhabdoid tumors (like most tumors) are genetically related. That means that within most tumors, the cell make up is different than those of normal cells. The difference between tumor cells and normal cells- or in this case rhabdoid cells and brain cells is that the rhabdoid tumor cells keep reproducing and don't stop. Almost all cells reproduce- which is good usually. Kind of like when you cut your self, and the cells around the cut reproduce in order to clot and then heal the area. But those cells stop reproducing when the infected area is healed. Tumor cells, as a general rule, keep reproducing until they 1) run out of space or 2) are killed.

So onto the genetics part. Rhabdoid tumor cells are missing a tumor suppressor gene within the cell make up. (Specifically it's the chromosome 22 hSNF5/INI1 gene that is deleted. Not important unless you are into this kind of thing!) SO basically ONE gene on ONE chromosome of ONE cell causes this tumor.

The question for the genetic testing boiled down to whether James was missing the tumor suppressor (INI1) in every single cell in his body, or whether the tumor suppressor was only missing in the tumor cells. And if the INI1 deletion was detected in every cell (which they test in his blood and spinal fluid), then was it because he inherited this deletion from either Matthew or I?

There were 3 options for the genetic testing that we were prepared for. I hope I explain them correctly (and once again forgive me because I'm trying to write them in the ways that I understand it!)

First Option

The INI1 suppressor was only absent in the tumor cells. We were told that this was only about 2% likely. The children that normally have this happen have rhabdoid tumors when they are older than 1, and they have the highest survival rates. Since James' tumor came back so quickly after the resection, and because he was 7 and a half months at the time of his diagnosis, this seemed unlikely.

Second Option

The INI1 suppressor is absent in all of James' cells. Somehow this happened at conception and for some reason the sequence of proteins, etc. was interrupted causing this complete genetic mutation.

Third Option

Either Matthew or I are missing the INI1 suppressor in our genetic make up and passed it along to James. If option 2 was true, then the lab will test the samples that Matthew and I submitted to see if either of us is missing the gene. If one of us is found to be missing INI1, then any future children we would have would have a 50% chance of inheriting this suppressor and most likely would develop a rhabdoid tumor as well.

We were prepared for option 2. We knew option 3 was a possibility, albeit small. All week I had been expecting the results and by the end of the week I had convinced myself that I had passed along the gene deletion to James and I had caused him to get the tumor. (It was a really bad week which I will write about later).

So Friday night Children's called to tell me the news. Sweet Megan, who is a geneticist, stayed late and tracked down the director to the outside lab to get the results (we had been having delays all week). She knew how nervous I was about the results, and I am just so thankful that she stayed late (On a FRIDAY) to find out.

James' tumor results came back NORMAL. It was option 1. There was one cell is in brain that mutated and caused this terrible, awful tumor. To say I was shocked would be an understatement. James was born absolutely perfect.

I thought that this was the option I wanted- and its true that it is good news. I don't know how I would have lived with the guilt if I had passed it on to him. Or if it had happened at conception I would have come up with a way to blame myself.

But now they have no clue why this one cell in his brain would mutate and do this. No earthly idea. And in some ways that is harder because there is no cause. It's just a fluke.

Flukes are hard- but it would be worse if I had given it to him. So I am thankful for that! I'm really interested in genetics now, maybe I will find out why cells do this!

James Crawling

2011-08-28T13:10:00.002-05:00

This is one of my favorite videos of James. It's from a little over a month before he died. I titled the post "crawling" but James' crawling was more of an inchworm kind of experience. If he'd been more patient he would have waited to start moving until he'd mastered the art of getting his arms and legs under him. Developmentally, that's the ideal scenario. He would have waited until he was strong enough to keep his stomach off the ground. James was never patient.

He liked to explore. First he crawled off the rug to check in on his puppies at the door. When his puppies wouldn't play (they were always disappointed James couldn't let them in) back to people. He always came back to people because they were the most reliably entertaining things around.

Graveside

2011-08-26T21:37:00.003-05:00

I decided to visit James today and check in. I visit often. I made the now familiar drive to Denton and took a book. I spent a few hours there. The spray we put on his casket wilted long ago, beaten down and slowly succumbing totally to the oppressive summer heat. Fresh flowers have a very short half life. I wandered the graves around his, wondering what neighbors we'd made. A boy caddy corner to James died at 13 last year. Today would have been his 14th birthday. Visitors trickled in throughout the evening, complete with Happy Birthday Balloons fastened to the headstone, fluttering in the wind long after the visitors departed. I wonder what a year will bring.

They dug a grave across from James- a service in the morning. Across the street, another baby boy, four months old. Another three person plot, parents on either side. Yet another baby resides a few rows over, a five month old. Their ages remind me how grateful I am for the eight we had. You can identify the children's graves quickly. More clutter- bunny rabbits and animals littering the base of the headstone, rattles and other plastic toys slowly fading in the sun. I spent a little time with each of them, wondering who besides me would visit my boy on summer days in the future, who would wonder at the toys I might bring him. Older teenagers and early twenty-somethings form the next cluster of graves in terms of age, offensive lineman and others with inscriptions alluding to premature deaths and extracurricular activities. Car wrecks perhaps, one cannot tell for sure. No one puts how they died on their headstone. It doesn't matter enough.

I curled up with a book and read some, the time wasted away quicker than I expected, quiet and peaceful as I'd hoped it would be when we first visited. Two trains, a few groundskeepers, and one insane jogger, who must have made long laps around the place for more than an hour. She was rail-thin already, I half expected her to keel over on several occasions. Perhaps she just thought it would be more convenient here.

I am not quite sure why I come so often. Kara is right in that it brings some people more comfort than others. Visiting James' grave is not visiting James. James is gone, he was gone well before he ever made his way to Denton. All that remains is his body, my son left at this world at 3:50 P.M. on July 16. He's not waiting for me in Denton. And yet I go. I go perhaps because it is the only place left in the world dedicated solely to James. He still has his room of course, his things remain untouched. But that's a place dedicated to his life- this is the only place commemorating his loss. Sometimes, I need to spend some time with that. It still seems stunningly unreal, an anomaly that I cannot believe. So I go to his grave to mourn him, because I need convincing that he's gone, that he needs mourning. I linger in the still, quiet space that he rests in and try to find a way to acknowledge that he's actually there, that my son has joined all of those other graves I wrote of before, that we buried him. In many ways it's not for him that I go, indeed, James doesn't need me or anyone anymore, he's undoubtedly found much more exciting people to play with. I'm going because I need to deal with him being gone, and it helps to talk to him about that there. I am not sure if that is the correct answer or the just the right answer for right now. I expect it to change. In a few years, I'm sure I'll agree with Kara and find it sad, which is unquestionably is. I'll go less and know the joggers less well. Right now, I'm just glad I have somewhere to go. As with so many other things, I'll figure out the rest later

Giraffe Contest Deadline

2011-08-22T21:52:00.004-05:00

Here is James enjoying his giraffe blanket, one of his many giraffe accessories. In addition to being very comfortable, this blanket had the added benefit of being machine washable, an essential quality for any James accessory.

Today was the last day for submissions to the Dallas Zoo for their Giraffe naming contest. Thank all of you so much for your submissions. We will not know the results until September, but regardless of the outcome it has been deeply humbling to see the response that this campaign has generated. It's touching to know that so many people thought of James and his story. Besides, I can't think of a better name than Jamie for a giraffe. Yes, I am extremely biased.

Throughout all of this, it has been a great comfort to know that James has reached so many people and touched so many lives. Although we'd gladly trade all of it in a heartbeat for a moment with him, it is gratifying to know that his memory lives on and is a source of comfort to others. James never did sad very well, and it is appropriate that his legacy be a joyful one.

Losing the Future

2011-08-21T23:18:00.000-05:00

When a parent dies, you lose your past; when a child dies, you lose your future.

~Anonymous

I saw this quote a few days ago on a child bereavement website. Maybe this sums up how I feel sometimes. I guess a lot of times I feel like I have lost my future. All of the things that I wanted to experience with James that will never be- like first steps, first words, coloring pictures. First day of school, first dance, baseball. Drivers license, graduations, wedding. Grandchildren.

Tantrums. Scraped knees. Broken arms. Asserting independence. Attitude. As silly as it is, I wonder what his tantrums would have been like. I am sure he would have had them. And I am sure that they would have been exhausting! But isn't that part of the fun looking back as a parent? That you can tell those stories around the table when your kids are older and laugh, even though at the time the tantrums about did you in?

Would James have given me sass when he was angry? Or would it have been a quiet anger summed up with a slammed door? Or maybe he would have learned to control his temper and surprised me by being completely cool, collected and articulate when upset. That would be a stretch given his parents, but I guess it could have happened.

There were so many things left to learn about him. I hate that I will never know.

So now James's future becomes what I make of it in some ways. His legacy is completely in Matthew and I's hands. I'm starting classes next week to finish my medical school pre requisites that I started as a freshman at Baylor. I began pre-med, and now, 10 years later, I'm going to try that route again.

In order not to lose the future, for me, I have to make some sort of meaning out of all of this. I learned a lot during our time in the hospital and I really feel like I need to be able to help other people even though I couldn't save James.

Maybe one day I'll be able to find a way to cure this stupid tumor. Today I am just really angry at it and wish that it didn't exist! I think that the timing of the beginning of the school year is hard. I'm thinking about the First days of school that James will never have. And for some reason that is hitting me harder than I thought it would.

Tomorrow is another day, and hopefully it will be better. I hope that those of you starting school tomorrow follow into a routine that becomes, well, a routine. And a big thank you to all the amazing teachers out there! You are selfless, patient individuals who sacrifice so much in order to provide excellent education. Also, thank you to all the higher education administrators that work so incredibly hard to facilitate personal and educational growth to young adults that will shape the future of our country. You are all in my prayers this week.

James' Eulogy

2011-08-20T22:33:00.004-05:00

I'm late in posting this. It's been a full month since we held James' service. More time has passed between now and then than between the time he was diagnosed and when he passed away.

That equation does not quite add up on the surface. The time we spent in the hospital, as terrifying and as breakneck as the pace was, felt- and often still feels- like it lasted a lifetime. Days were full of events, rounds, tests, and a thousand other things. We were always on, always alert and waiting anxiously for the next hurdle. It feels as though time stopped, even if the world did not, and hours dripped by while we waited with him in that room. We were frozen, out of sync with the rest of the world. Since the service and James' death, everything has gone much faster. Slower at first, and then slowly you feel as though you're slipping back into the current of the world, into its rhythm. The weeks resume their regular pattern. Weekdays begin to differentiate themselves from weekend days, schedules become less urgent, and often completely voluntary. Sometimes that's a blessing, and it's wonderful to feel as though you're part of the world again. Other times, its infuriating, because the faster time passes the quicker the gap between James' final days and the present accumulates, and in an odd way, the farther away we are from him. Sometimes I feel silly thinking these things, wishing time would slow down again- however much I want to catch my slate of Sunday night TV again. But then again I'm slowly beginning to learn that there's no right way to do this, no correct form of mourning. There is no template. There's just what happens.

But I digress. I logged in just to copy paste his eulogy and post it, and the next thing you know I'm dwelling on time and grief. I suppose that just goes to show how flimsy the "plan" is nowadays. In any case, here's the eulogy Dr. Fiedler delivered for James. It's beautiful, and a fine tribute to James. We are incredibly grateful for his eloquence.

Eulogy for James Camden Sikes
Dr. John Fiedler

This afternoon we gather in celebration with a sense of deep gratitude for the life of James Camden Sikes
Do we need to state the obvious? That we would have wished more time for James and his adoring parents? More months? More years? That goes without saying.
Yet Christian faith has always been an affirmation of kairos over chronos.
Special moments over cumulative time.
Quality over quantity, if you will.
And that’s why we are grateful and that’s why we can celebrate
That’s how we can hold a giraffe party in this hallowed sanctuary in honor of our sweet baby James.
Because of the profound concentrated joy and light embodied in his remarkable 8 months.
And we know that when something very wonderful comes to an end that our good manners dictate that we take time out to give thanks to the one who made it possible….and so we gather this afternoon to thank God for giving James to us in the first place.

Matthew and Kara first called him "Bean" for the first 20 weeks in the womb because that’s what he looked like on the sonogram.
Kara had guessed he was a boy and she was right!
After he was born, they called him "Baby Bird" because every time it was time to eat he cocked his head and opened his mouth!
They also called him “Baby Bear" because of Matthew and Kara's obsession with all things Baylor.
And finally, they call him "Jamesie the Giraffe". There is a song called "Joshua Giraffe" that Kara listened to when she was little.
James was born by C- section because he had the umbilical wrapped around his neck but he was sunny side up and bright eyed ready to take on the world!
He had a a shock of hair on his head and a contagious pixie like smile filled with mirth and joy.
When he was 5 and a half months old, Kara and James were shopping at the grocery store.
She was checking out and James was sitting up in the seat. Kara turned around and a lady had picked you up out of the shopping cart and was holding him!
Kara calmly asked her to give her back her baby.
The woman explained that she was a grandmother and just "had to hold him."
That she couldn’t help herself!

For these past four weeks we have all felt like that grandmother in the grocery store.
We have all wanted to hold James in our arms, in our thoughts, in our prayers.

James was baptized on Mother’s Day.
He had such a great head of hair – an explosion of auburn and that coupled with his engaging precocious smile and his dancing eyes seemed to say,”Hey, let’s play!!”
He loved to play and laugh.
He embodied such joy.
He made me laugh.
He made a lot of people laugh.
And the baptism was an external sign of what we knew to already be a reality: that James was a child of God.

He certainly has been the light of Matthew and Kara’s life.

Last month James got sick the way that babies often do spitting up
So his parents took him for repeated doctor’s visits
Looked like a bug, maybe the flu, maybe ….we’re not sure.

On Wednesday June 2, they took James to Children's Hospital and get some fluids
And thus began a long odyssey of assessment, diagnostic, CT scans, and MRI’s
And the discovery of an aggressive rhabdoid tumor

Throughout the gauntlet James was essentially James
Happy, smiling, playful playing peek-a boo with the hospital bed
Matthew and Kara chronicled their daily trials, hopes, and pains in a blog
That so many of you followed
Because they are both such skillful writers, we experienced it all too.
The profound love, the heartbreak, the joy
It was hard for them to be so caring and capable and then reduced to being helpless and dependent.
Waiting is the hardest work of all and Matthew and Kara stood vigil and navigated through the maze of hospital care and procedures.
As Matthew wrote:
One thing this experience has definitely proven is that any sense of control our actions might lead us to believe we have is purely illusory. As Kara said, all we can really control is ourselves and our reactions.
And they worked hard to do just that.

As Kara wrote:
Through it all I choose to have the attitude that God is the Great Healer. That He knows and loves James more than we can fathom. I choose to believe that James should be surrounded with a positive attitude, that all things are possible. That's why I implemented the "no crying" rule in his room.

It didn't mean that people couldn’t cry. It just meant that you didn’t cry in James’ room. Not in front of the menagerie as Kara liked to call it.
James’ room and bed were filled with stuffed animals of every stripe. A menagerie. A collection of soft, plush, and silky giraffes and monkeys- giraffes.
He had a giraffe blanket, a giraffe pacifier, his Sophie the giraffe, a plush monkey. No member of the menagerie was superfluous, and James was an equal opportunity chewer, thrower, and cuddler.
He had time to get to every toy, no one was left out. The doctors tended to James and James tended to his zoo.
The MOMS group from our church came up to the hospital and delivered a labor of love- a prayer blanket that they all been worked on.
It’s a beautiful blanket and their visit was well timed and so much appreciated.
Matthew and Kara had had a rough day.

Throughout their ordeal, Matthew and Kara have expressed a deep appreciation to family, friends, and church – everyone who prayed and visited and encouraged them.
Helped and supported them when it seemed that they couldn’t carry on any further.
We all prayed to God for healing and for James to return to his vibrant energetic life.
But then we all know the hospital narrative
James had a successful surgery that removed most of the tumor.
But then the tumor came back.
And there was nothing else to be done.
But, that’s not quite correct.
There was something very special and profound to be done.
Bring him home.
Matthew and Kara wisely chose to extract him from the tubes and the wires and bring him home to his room, to his bed, where he could be shrouded in love.
Go for a ride in his stroller.
Have a giraffe birthday party complete with a giraffe and his name on the vanilla cake.
Be at peace.
Be at peace in the arms of those who loved him.
And this past Saturday at 3:50 p.m. James was released from the torment of the cancer.
James beat the tumor .
The little angel took flight.
As their blog says, Matthew and Kara had him for 8 months. That’s a long time to spend with an angel.

The book of Genesis begins with the story of the Garden of Eden and it explains how Adam and Eve had everything they needed living in an idyllic garden and how they were expelled into an existence of alienation, isolation, and despair.
The task of faith has always been to get back to the garden.
To get back to that place of warmth and security and sense of being constantly loved.
To recover an ideal state of being that has been lost.

Today we celebrate the fact that James never left the garden.
From the idyllic warmth of the womb to the snug warmth of his crib in his nursery and even the high tech ambiance of the PICU, he was enshrouded in love.
Surrounded by soft snuggly animals.
Doted on. Adored. Tossed into the air. Hugged. Fed. Held. Rocked. Serenaded.
A boy who hated naps and loved people
James only knew happiness. James only knew love.
And he is now with God and the Christ who invites all God’s children to be with him
What remains with us is his blessing manifest in the memories, the pictures, and the touch that he has left with us.
We cherish him and will continue to do so.
We embrace and support his parents and will continue to do so.
Buying plots in a quiet cemetery in Denton on Sunday, Matthew and Kara were shown a few spaces and finally chose a block of three by a newly planted tree where we could put a bench.
They bought all three.
James was laid to rest in the middle spot this morning.
And someday his parents will follow.
Once upon a time, they asked each other but never answered "Where would you want to be buried?"
Now the answer is obvious and simple:
"With James."
The touching refrain in the children’s book says:

I’ll love you forever
I'll like you for always.
As long as I'm living
My baby you'll be

But Matthew and Kara, even when you are no longer living then James will be your baby and you will hold him once again.
All of us eventually depart from this mortal existence and go on to meet our maker.
This afternoon I claim for James all of the blessings promised us by our Lord and Savior Jesus Christ
Eternal life and the promise of a blessed family reunion.

I conclude with a poem by e.e. cummins that Kara posted on their blog:

i carry your heart with me (i carry it in my heart)
i am never without it (anywhere i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear no fate (for you are my fate, my sweet)
i want no world (for beautiful you are my world, my true)
and whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart).
Amen.

Fotolanthropy

2011-08-19T15:47:00.001-05:00

As most of you know, Katie Norris blessed us immensely when she came all the way to Children's and took the most beautiful photographs I have ever seen in my life.

Seriously. The most beautiful photos. Sometimes I just stare at them.

Katie launched Fotolanthropy the morning that I (through tears) asked her to come and take pictures of sweet James before he lost his hair. I really wanted pictures of his beautiful hair, and I was so sad he was going to lose it during chemo. (Remember at this time I truly thought that James was going to beat the tumor and that we would be doing 52 weeks of chemotherapy.)

Katie and her team of assistant photographer Brooke and videographer Daniel Troupe gave us the second most precious gift I have ever received (after the gift of James of course). Little did either of us know the impact that these photos and her work would have.

Katie tells the story of how she became involved with our family on her Fotolanthropy blog. I loved being able to read how James impacted her world. It is truly a "God thing" how we got together, and I am so grateful that I got to know her.

Katie donated her entire session fee as well as gave us 2 HUGE prints of sweet James and a HUGE array of beautifully printed photos. She and Brooke also created an amazing guest book for people to sign, which many of you might have seen in the various news stories we have been able to do. Daniel also gave us all the footage of his shoot, as well as created the video that I still cannot watch without crying.

Please visit Katie's Fotolanthropy site to read her side of the story! Also, keep her and her ministry in your prayers. Katie is launching Fotolanthropy in order to bless other families the way that she blessed us. She is truly amazing, and I just can't believe that I am so lucky to have amazing people like her in my life.

(Also- all you DFW people, Katie has been featured in D Magazine Weddings and takes amazing family portraits. If you are looking for the most wonderful photographer to work with who has the kindest heart and takes beautiful pictures- call Katie! She is beautiful inside and out!)

Yesterday

2011-08-17T20:55:00.001-05:00

~*Disclaimer: This post contains discussion of breastfeeding and breastmilk.
If you don't want to read about that, then don't!*~

Well, so after I had my little pity party on the blog yesterday I decided that I needed to get out of the house. I drug myself to the gym for the first time since I was pregnant. During my pregnancy I did water aerobics about 3 times a week. I was the youngest one by a good 30 years, and some of the women were in their 80's! They were so sweet to me while I was pregnant, and it was so fun to have a group of older women that I could ask all my mommy questions to! I had ruptured discs in my back during my pregnancy, and I had back surgery when James was exactly 6 weeks old. Between the recovery from surgery and some other things that happened before James got sick, I just had not been back. I know. Slacker.

So yesterday afternoon I went to the gym. I got on the elliptical and made it the whole 30 minutes. It was awful, not going to lie. But I finished, and went back today and did it again. It's amazing how much better I feel when I get the endorphins going. Everytime I hear the word "endorphins" I think about Legally Blonde. Does anyone else think that?! I might have watched that movie a few too many times...like every night before I went to bed my entire sophomore year in college.

I came home, and then the Mother's Milk Bank of North Texas called me to set up a time for me to bring in the milk I was donating. They suggested yesterday afternoon. I knew it was coming- I had applied and had a blood test already. But for some reason it was so hard for me to actually follow through and donate the milk.

Like I said before, James was strictly breastfed. He was so into the boobie that he refused to take a bottle. Ever. I mean he would throw them across the room when he was older. When he was younger, he would clamp his mouth shut and refuse to open it. Then he would cry and cry. When I had my back surgery, he had to take a bottle. I was on so much medication and anesthesia that I had to pump and dump. So my mom got him to take a bottle by cutting a hole in her shirt, spilling milk all around it and pretended he was getting the boobie. It didn't work at first, but he finally got hungry enough that he ate. Have you ever seen a 6 week old baby glare at you? Well, I have. James was so mad when I came home and wouldn't feed him! It just broke my heart!

So the whole time he was in the hospital, I pumped with the industrial grade pump that the hospital has. Wow, that pump is ridiculous. Each time we were discharged from the hospital, I came home with bags of frozen milk. After James died, I knew that I needed to donate the milk. It doesn't do any good sitting in my freezer. And I know that it will help a baby in the NICU who really needs the milk. But a part of me just didn't want to give it away.

So yesterday I pulled up to Baylor hospital and gave all my frozen milk away. I think the lactation nurse was a little confused why a woman with no baby and no car seat in the car would be giving her milk, but she didn't ask any questions.

After that I dropped by my sweet friend Monica's house (who is expecting twin boys! I'm so excited! :) ) to say hi, and then Matthew and I went out to the cemetery to see James. Honestly, I don't really like going out there. I know that some people find a tremendous amount of comfort going to the cemetery. I am just not one of those people. I think it upsets me more than comforts me.

So yesterday still was hard. But we got through it. Below is a video that my Dad took of James right before his big craniotomy. I think he says "momma" in it! It's the only time I ever heard him say anything close to it, and it makes me cry everytime I watch it. But- crying in a good way. I'm so thankful that I can hear his sweet little voice. One of my biggest fears is that I thought I might never get to hear him say that. I hope you enjoy! (And like every other picture/video from the hospital- I am not looking my best. I'm self-conscious about it, but I'm trying to get over that so ya'll can see more of Jamesie!)

NBC 5 News Story about James

2011-08-17T20:14:00.002-05:00

I can't believe I forgot to post this!

On Monday, Lindsay Wilcox from the DFW local NBC station came and interviewed us about James and the giraffe. She did a wonderful story about James, the tumor, and how the baby giraffe happened to be born a week after he died. Lindsay was so incredibly kind. I just loved her! She has a 2 year old daughter and an 8 month old son who are both adorable.

I just feel like we really got along with her, and she was just so warm and welcoming. I love the way she told James' story, and I am so glad that I got to meet her!

http://www.nbcdfw.com/news/health/Couple-Wants-Giraffe-Named-In-Honor-Of-Their-Son-127785173.html

1 month ago

2011-08-16T11:59:00.061-05:00

1 month ago today I was holding James. He was struggling, but he was still here and in my arms. 2 months ago he was fine. Or what I thought was fine. He and I were throwing a ball back and forth across the living room. James was somewhat unstable as he threw the ball, but I just thought that it was normal that he wouldn't be able to sit still. He had sat still before, but for some reason I just didn't see it. Looking at the videos now, it is all so clear. Gosh, I just had no idea then.

I miss my baby. I miss him so much. I miss giving him baths. I miss walking into his room in the morning and seeing his smiling face. I miss changing his diaper. It took me 2 weeks to finally change the diaper genie. For some reason I just couldn't do it. And now I have no reason to even have a diaper genie.

I miss everything. Today especially is hard. It's 12:00 and I haven't taken a shower or gotten dressed. I've had this rule that every day I have to take a shower by noon. Otherwise I might stay in my pajamas all day and that doesn't accomplish anything. But today is different. I just can't make myself do it today.

I haven't hardly touched his room at all. My friend Cathryn and I cleaned it and organized it. But it looks exactly the same as if he were still living in it. Sometimes I just go into his room and sit in the rocker. So many memories in that rocker. It's where I fed him every night before he went to sleep. So many stories read. So many hours just rocking him in that rocker.

I've held other babies. The feeling of longing doesn't go away though. No other baby could ever take his place. I had a dream a few weeks ago that I had just given birth to a little girl. And I just hated her. Absolutely hated her. Everything she did, I hated her. And who hates their child? But I did. With every toy she played with, with every laugh, I thought to myself (in the dream) that James didn'd do that. As she got older, past the age that James had passed away, I just kept thinking that James wouldn't have been that way. He wouldn't have acted how she acted.

I asked my counselor about it (who is wonderful and is really helping me during this time) and he said that I probably had this dream because there isn't a replacement for James. For me, the thought of another child is just trying to replace my perfect baby. And that doesn't mean that I will always feel that way, but I do right now.

So, sweet James, there will never be a replacement for you. He is never far from my thoughts. Every time I get in the car I think of the car seat that should be there. Every time I go to the grocery car, I catch myself reaching for the shopping cart cover that he will sit in. Every time I see his play group friends playing, I think that he should be there. And although my friends are amazing at including me in the "normal" things that I was a part of, its still hard.

So today is a hard day. Today is one of those days that it's a choice to take a shower. And it's a choice to get up and do something. I don't know what that "something" will be. I might go to the cemetery- I've only been once since we buried him. I'm not sure. Thanks so much for all your prayers and support- especially today.

Eating for a Cause!

2011-08-16T11:45:00.008-05:00

Fudge brownies

So for those of you who don't love to shop-but love to eat- this is right up your alley! Wholesome Foods Bakery is owned by Taylor Nicholson, who's brother-in-law and wife go to our church. She was so sweet, and brought so many treats to the house when we brought James home. The treats were gone in about 2 days! They were delicious.

The kicker is....all of their yummy goods are GLUTEN FREE! And they have vegan options, as well as dairy-free treats. I know many of you have food allergies or have children who have food allergies.

Whole grain sandwich bread

And these don't taste like your typical dry, crumbly attempts at bread and muffins. They use only unrefined sugars and heart healthy fats. So in my book, their products really count as a vegetable if you get their amazing pumpkin muffin s, or a fruit if you try the cranberry apricot foodbars! I had no idea they were gluten-free when I tried them and thought they were amazing. I was amazed to find out how wholesome they really are!

Sweet Taylor has offered to donate 50% of her profits for the rest of the month of AUGUST to James' fund. All you have to do is mention "James" when you come to her East Dallas storefront, or write "James" in the comments for any online order. How amazing is that?

Cinnamon sweet rolls

These freeze really well and would be great to keep in the freezer for unexpected guests. Also, they are great to have on hand just in case a friend of your children is allergic to lots of ingredients and you need a snack!

WFB has many more options in their store, like cakes and cake balls, hamburger buns, pizza crust, cookie dough and more. So, East Dallas people, please stop by and support James' fund through the end of August! They are located at 718 North Buckner Ave, just east of White Rock lake near the Green Spot and Gold's Gym.

Wholesome Foods Bakery also ships nationwide. If you are wanting something other than is offered on the website, just give them a call and I am sure they would love to send you some of their scrumptious snacks.

Yummmm....it's definitely time for lunch now!

Change

2011-08-15T17:22:00.001-05:00

The baby aisles in the stores are changing. New products drift onto the market, old ones are phased out. It’s only been a year since we stocked the nursery, and it’s already going stale. Items have been placed on clearance, discounted and disposed of for newer models. The flavors of pedialyte are even changing, or at least the ones they stock are. The world moves on imperceptibly, and James remains precisely the same, unchanged in a plot I pick the rocks off when it rains. It is to be expected of course, if James were alive, he’d age and acquire new toys. The changing seasons would translate naturally into changing outfits and accessories. Football season is around the corner, if he were here I’d buy him a ball, a new Baylor bears outfit that fit to replace his old one, now much too small. In a few years, he’d have probably realized, wisely, that the Bears were awful. I wonder what team he would have chosen to replace them.

He’d have started talking soon, building the syllables of “ah” “ma” “ba” and “da” into something approximating language. The closest he ever came to forming words came shortly before his big surgery. It was 5:30 in the morning and we’d been up all night with him. He cried and cried because he couldn’t eat and we wouldn’t feed him. Along with a chaplain, we sang to him, and the tunes (all poorly rendered) distracted him enough to stop him from crying. A few minutes before we finally left for the OR, he started talking to us. Bahs and ahs, mahs and dahs. He strung together “ma-ma” and “da-da” though that very well may have been my wishful thinking. After the long night the grim morning awaiting us, I felt relieved, grateful. Even if it was only in my head, I’m glad we got to hear it. I wonder about what else he had to say.

He was always ahead on his developmental “milestones.” Before he got sick, I just assumed he inherited my impatience. It was also the source of an odd, unearned pride, something along the lines of “He’s so quick! And he rolled over a month early! Clearly he will both win the Heiseman and become a Rhodes Scholar.” Now I often think James just knew he didn’t have the time to wait long enough to hit everything on schedule. I wonder what boxes we’d be checking now, what dates we’d mark to belatedly record in his baby book a month or two later. There are no new dates however, only old ones that we’re becoming farther and farther removed from.

Many changes should be occurring, but it is not so. He remains where he is, frozen in time. No new pictures, no new words, no new anything. Just memories that I play over and over again in my mind, afraid they’ll fall into some crack and never return.

There’s a lot of things I miss, but in an odd way change is one of them. I miss knowing that things were going to change, that James would change. It seems odd for him to have become a memorial, fixed and unchanging. He was always more dynamic than that. Perhaps that’s why, as the absence of seeing him change so quickly simply brings home the fact that he never will change again, because he is not here to change.

It’s not that his life isn’t being celebrated, that we’re not joyful for the time we had with him. I think everyone who knew him feels that way. There is much to be thankful for, and in the balance, James’ life contained more joy than anything else. He certainly left us with more. All of that is true. It’s just that James is a joyful angel, but he’ll never be a toddler.

On the other hand, James never needed to change. In my completely unbiased, objective opinion, James was the most perfect little boy who ever was. You cannot improve upon perfection. Now he’ll simply be perfect for eternity.

Shopping for a Cause!

2011-08-14T22:19:00.001-05:00

So who doesn't love to shop?! I know I do. Sweet Tahnie at http://www.ahappygirl.com/ has offered to donate 50% of her profits from Stella & Dot to James's fund!

I am LOVING the Toujours collection. I wear white jewelery all the time, and it just seems to go with everything. (Or at least that is what I tell myself!) It reminds me of spring and summer, which are my most favorite times of the year.

And these gold earrings would go with everything! So simple, yet can be dressed up for a night out or worn with cotton shirt and jeans around town. (Unless you get dressed up to run errands. And if you do, and we meet at the grocery store, please ignore my sweat pants and hot pink crocs that should really be banned to the trash can. Or if it's 100 degrees and I have on my Baylor nike shorts, a non-matching t-shirt and flip flops. The flip flops are what prove I didn't just work out and I really have no excuse to be wearing work out clothes...but if we meet then please pretend that I did. End of tangent).

To order, go to Tahnie's Stella & Dot website http://stelladot.com/tahnie.

In the upper right hand corner it will say, "Can't make it to the trunk show?" Find your hostess

Click on the link that says "Find your hostess"

Type in James for the first name and Sikes for the last name

Click on the James Sikes link and shop away for an amazing cause!

Please check out Tahnie's blog. She has an amazing story and her little girl is just too adorable for words. I just can't believe that people I have never met want to help raise money for this terrible tumor- and I am so incredibly thankful for that! So if you love jewelery, shop away!!

The Dallas Zoo

2011-08-13T17:19:00.000-05:00

Thank you all so much for submitting so many forms to the Zoo! We are so thankful for everyone's support in this.

The name for the baby giraffe will be picked by the handlers that take care of the giraffe. The Zoo leadership will pick 5 names for the handlers to choose from, and then they will make the final decision.

We are so thankful to have even had the opportunity to try and name the giraffe! But we completely understand if the handlers choose a different name. As you can see, James absolutely loved the Dallas zoo. We had the opportunity to take him several times, and he had a BLAST!

And just so you all know- we support the zoo in whatever name they choose! We can always go to the zoo and call her "Jamie"- even if they don't choose it! I know that many of you have called the zoo on our behalf. I can't thank you enough for thinking of us. The zoo is well aware of the situation, and they are inundated with calls! Please know that they are doing a wonderful job of manning the phones, and they want to keep the contest fair.

Because there is a trip involved, we have told the zoo that if the name "Jamie" was to be picked, and they were to award the prize to us, we would absolutely not accept the trip. What is done with the trip would be up to the zoo, but we would whole-heartedly embrace the trip being donated to a family in need or to Make a Wish Foundation or whatever the zoo wants to do! I know these are hypothetical situations that would occur after the naming, but I just want to clear that up!

Thank you, again, for all of your support! We are so incredibly blessed by this out-pouring of love. You are so very dear to us, and we cherish all of your thoughts and prayers still.

And I have to add this- wasn't James the most beautiful baby? I just love the last picture of him. We were checking out the lion at the zoo (I think it was the lion...could have been a tiger or a jaguar. It's hard to remember!). I know he's my baby so I'm not supposed to brag...but sometimes I just can't help it. :) I miss those sweet eyes taking in the world, always inquisitive and searching for the next thing to pop up.

Answering the "Why?" question

2011-08-11T08:54:00.000-05:00

I know that so many of you have asked God "Why did this happen to James?". Please know that you are not alone in asking this! I have asked God this question so many times also. I think I may have said this before (or maybe I just thought it- I can't remember!) but there is no good reason why these things happen. It's the same question- "Why do bad things happen to good people?"

For me, I take so much comfort in knowing that James is with Jesus. I don't know what Heaven looks like. I don't know if you spend all day singing to God or floating around on a cloud. I know there are a lot of books out right now that describe Heaven's glory. For me, it doesn't matter what Heaven actually "is".

In my mind, there is only one thing that matters. I know that Jesus loves James more than I can fathom. I know how much I love and did love James when he was here with me. I know the deep longing I have for him and I know the aching in my heart that misses him. But I also know that God created James. He formed him and knows him more intimately than I do. And if I only know one thing- that is that God loves James more than I possibly could, so that must be ALOT!

One of the ministers at my church, Jay Cole, came and spoke to our Sunday School class a few weeks ago. I'm going to try to paraphrase what he said- and hopefully I won't butcher it too much! His words have really helped me the last few weeks ago.

Reverend Jay said that he believes that God gives every person, every being, Free Will to choose God. That means that every single living thing has the opportunity to submit to God and His will for our lives. In cases like these, that means that even something as small as a single cancerous cell has the opportunity to either a) continue reproducing and cause havoc on James' body or b) submit to God's authority and stop.

So, in other words, it is not that God just didn't choose to heal James. God is so loving that he allows all of us the chance to CHOOSE him. (And Jay, I really hope that I explained this right and didn't mess it completely up. Let me know if I need to be set straight!)

I know that this is a somewhat simplistic view- but for me, it definitely helped. And it doesn't explain always why bad things happen but to me it makes sense!

Also, while I am on the subject of God's love- I know I have said this before, but I cannot tell you how vitally important my church community and Sunday school class have been. I attend First United Methodist Church, Dallas for those of you in the area and who are looking for a church home. I have been so blessed by this amazing group of friends who have become my second family.

And I know how hard it is to get up the courage and attend a church, especially if you don't know anyone! It is super intimidating! But please know that there are people in every church who have open arms and loving hearts and want to get to know you. They want to share their lives with you and want you to be a part of their community. If you visit one church and it doesn't feel right- then keep looking! I know the "church shopping" experience can be frustrating, but the reward is so incredibly worth it.

I hope I haven't offended anyone. I'm not a theologian. I have no advanced knowledge of the Bible and have honestly been slacking off in my Bible study. The one thing I do know is that God's love is infinite and that no matter what happens, God's love remains unchanged and faithful. I hope that each of you who read this know that, and know that you are so very important and that you matter. You matter to God and you matter to me.

And so if you are struggling in the "Why's?" of life, I hope that this helped maybe a tiny bit. Or maybe it didn't! But that explanation helped me so I thought that I would share! :)

Matthew's Note to the Dallas Zoo

2011-08-10T14:49:00.001-05:00

Matthew wrote this a few days ago and included it in his submission to the Dallas Zoo. He did a great job, and it really sums up why it means so much to us to even have the opportunity to honor James in this way.

On my son's grave, there are two giraffes. One is a figurine I found at the Dollar Store, desperate to find something childlike to go with the temporary flower arrangement I'd bought. The other is the letter "J" wrapped in giraffe print fabric, a product of my wife's crafting when he was in the hospital, an ornament to decorate the room. We never planned on Giraffes. The theme for the nursery, never clearly defined, slowly evolved from the bedding into a jungle, but a jungle without giraffes. Monkeys, Elephants, and Lions all. A stenciled monkey rested above his head, swinging from vine to vine. Two monkey lamps, one on the nightstand and one on the changing table. A monkey, giraffe, and lion on the wall and hand painted by my wife onto the block letters that formed his name on the wall. But no giraffes, not a single one.

I suppose this just goes to show how little you know when you're planning to have a baby about the baby itself. How could I know James was meant to be a giraffe and not a monkey? I could not. Indeed, his preference revealed itself slowly, and then all at once. It began with a song. One day, without precedent, my wife sang him the song "Jamesie the Giraffe" it has only three words, the same as it's title, and repeats several times. It became something to sing to him, he loved singing, and he loved his name. Jamesie the Giraffe was perfect. I still sing it to him, each time in the cemetery before I leave his grave. It only seems fitting to leave him with a song. He always like that more than talking.

Jamesie the Giraffe evolved slowly into a preoccupation, a nickname we repeated without song and verse. Slowly, giraffes began to dominate his space. A Sophie the Giraffe, twenty five dollars at Nordstrom's and indistinguishable in any other way from a dog chew toy. James loved the long neck and the long legs, as it meant that no matter how he grabbed it, there was a long, pointy part to chew. And James loved to chew, first with his two bottom teeth, and later with his fangs too, cuspids racing ahead of incisors. Jamesie the Giraffe.

We took him to the zoo twice, each time with special attention to the giraffes. We bought a membership, as we just knew we'd come enough to make it a good value. Though James was too young to ride the carousel (despite how fascinating he found it) he loved the animals. Each was something new and different, something new to take in and experience. For James, life was too boring from the confines of a stroller. He wanted to get and out and do. Jamesie the Giraffe met his new giraffe friends with disbelief. They were near, entertaining. They came right up to you like a fun toy. Although he was very young, we encouraged him to feed them the heads of lettuce we bought from the zoo. James, unimpressed, first tried to eat the lettuce, and finding that unappetizing, decided instead to throw it at the ground. The giraffes came close, and he stared intently. We sang him his song, to remind him he was Jamesie the Giraffe.

He got sick all at once. A summer bug became a tumor, a tumor evolved swiftly into cancer lurking in his brain. We spent a month in the hospital, and giraffes kept us company. Sophie came the first night, when we thought we'd only spend a night or two there for fluids. More giraffes followed, as we tried to buy our little giraffe son some measure of peace, or if not peace, entertainment. His giraffe blanket, soft and silky. His giraffe ankle rattles, loud and even more fun to shake- though nothing was ever as much fun as something in his mouth. A five and a half foot tall giraffe, encamped in the corner and as big as a person, carted from room to room as we went from floor to floor, from ICU to neurosurgery, from oncology to surgery. On his door, another of my wife's craft pieces, a ring covered in giraffe print with his name, James, written on top of it. But the hospital couldn't help us, as the Doctors at last admitted, it never could. The cancer was routed by a surgery, only to return in two weeks stronger than before, spreading like a wildfire through his brain. It was time to take our Giraffe home.

The giraffes followed us there, stuffing the car and smiling from ear to ear as always. That Friday we had a birthday party. 37 weeks of James. A giraffe adorned his cake, a giraffe tablecloth draped the dining room table. Ribbons or giraffe print snaked through the serving platters, and the five and a half foot giraffe looked on from the corner. We celebrated, sang Jamesie's song, and wished him a happy birthday. He died the next day, at home in a nursery that never began with Giraffes, but ended with more than it knew. The last story we read together was "On the Night You Were Born" We never noticed until afterwards, but the final illustration on the final page is of two giraffes staring up at the moon and stars, at Heaven. Once you start to look for giraffes, you see them everywhere. We buried him on Wednesday, with his friend Sophie the Giraffe, his Giraffe blanket, his giraffe rattles, and our last book to keep him company. No lions, monkeys, or elephants made the cut. Now, giraffes always bring us memories of James. Kara wears a giraffe necklace everyday, his name stenciled into its body. On my key chain is an identical giraffe. We carry our giraffe son with us always.

To carry his name on to an actual giraffe, after we spent so much time naming him just such a creature, would be a great honor. After all that my son did and loved, it seems only fitting that we've now realized he never was a monkey, a lion, or an elephant. He was Jamesie the Giraffe, and he always will be. Thank you so much for your consideration of this special name.

CBS 11 News story about James

2011-08-09T23:06:00.004-05:00

CBS 11 News in DFW came today and interviewed Matthew and I about James and our efforts to get the Giraffe named after Jamesie!

Below is a link to the video and the news story if you are interested in watching!

http://dfw.cbslocal.com/2011/08/09/naming-campaign-pushes-to-honor-8-month-old-cancer-victim/

CBS is also airing the segment again during the 4:00 news hour today (August 10th). I would love for you to check it out live if you are in the DFW area! We had a great time talking with Jay, the reporter. He was so kind and compassionate and I am so thankful that he did the story on sweet James. Jay is expecting his first son in October and so he really understood what it was like as a parent wanting to carry on your child's legacy.

Giraffe Necklace

2011-08-08T13:13:00.001-05:00

THE GIRAFFE NECKLACES ARE AVAILABLE AGAIN FOR THOSE WHO ARE INTERESTED!

Do you see this beautiful giraffe necklace?

I wear it every day now.

My sweet friend, Jean E, and my Sunday School Class contacted Lorelei from LoreleiRose etsy shop about possibly purchasing this necklace for me. Within 30 minutes of emailing Lorelei, Jean E had a response that Lorelei not only had this necklace, but she had already stamped it with Jamesie's name and was just waiting to send it to me. Lorelei shipped it immediately, and the amazing women of my Sunday School class bought all the ones she had in stock to wear in memory of James.

Lorelei has made some more necklaces, and she is offering to give $8 of every sale to James's fund.

I can't tell you how much I love this necklace. It's beautiful, and I am so grateful that Lorelei wants to donate $1 for every month of sweet Jamesie's life to his fund. If you would like your own giraffe necklace (which you should, because I hear giraffes are making a come back :) ) please follow the link and Lorelei will get you your very own.

http://www.etsy.com/listing/76764458/personalized-giraffe-custom-hand-stamped

Giraffe form

2011-08-08T11:33:00.000-05:00

Ok so I converted the pdf to a jpg, and hopefully that will work for those of you who can't access the form. You should be able to right-click on the image and download it that way. If that doesn't work, I definitely need someone who knows way more about computers to help. Thank you again for all your help!!