Tuesday, January 31, 2012
1 Million
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.
Thursday, January 26, 2012
Guilt
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.
Labels:
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sleep is non-essential,
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Sunday, January 22, 2012
Association
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.
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.
Monday, January 16, 2012
6 months ago and Lasts
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.
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.
Sunday, January 15, 2012
Monday the 16th
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.
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.
Thursday, January 12, 2012
Momentum
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.
Sunday, January 8, 2012
Anna Rose
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.
Thursday, January 5, 2012
Kara and James
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.
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