Saturday, December 31, 2011

New Year's Eve


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.

Tuesday, December 27, 2011

Should have

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. 

Sunday, December 25, 2011

Merry Christmas




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.

Saturday, December 24, 2011

Lucky

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.

Sunday, December 18, 2011

Together

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.

Sunday, December 11, 2011

Graveside Revisisted

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.

Wednesday, December 7, 2011

Birthday


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.


Thursday, December 1, 2011

Review


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.


Tuesday, November 29, 2011

Twenty Nine


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.


Thursday, November 24, 2011

Thankful



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.

Friday, November 18, 2011

The sun is starting to peek out

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!

Monday, November 14, 2011

Digital





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

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....

Wednesday, November 9, 2011

Days




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.

Monday, November 7, 2011

Holiday Ornaments for a Cause!


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:
Enter the code "JAMES" at checkout
10% of every purchase will go to the James Camden Sikes fund


Saturday, November 5, 2011

Birthday


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.

Tuesday, November 1, 2011

Halloween

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? 

Monday, October 31, 2011

Winston and Maggie

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. 

Friday, October 28, 2011

Happy Birthday, Baby

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.

Tuesday, October 25, 2011

Jealousy Issues

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. 

Friday, October 21, 2011

Looking for the small blessings

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.