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.

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. 

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.

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.

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.

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.

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.

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.