Thursday, July 21, 2016

Five Years Later

I remember.  Perhaps that is all that remains, five years on.  Our father son relationship long ago exited the kind of linear progression I initially envisioned with his birth.  Walking, talking, elementary school, junior high, high school.  Awkward advice chats about how to handle girlfriends.  Well-meaning instructional sessions on how to throw a football and a baseball, though god knows he’d be better off learning all things sports from someone else.  The most I could contribute would be lessons in the fine art of armchair quarterbacking.  James and I will never share those kind of father son moments, in our last moments he will always remain eight months and 17 days old, full of promise and aspiration.  I will never know the five and a half year old boy he’d be today, on the edge of kindergarten and a brave new frontier.  I would have liked to, but he’s only a projection now, more uncertain in nature with every year.  What remains is memory. 

That’s all I can do for him on a certain level.  Sure, I can raise money for cancer, heighten awareness, but these all amount to varieties on a theme.  I give to charity or research, I post links reminding my friends to go gray for May.  It’s not for May though, and it’s barely for brain cancer, which I am interested in primarily and viscerally because of James.  It’s for him.  It’s to remind the world and everyone that he was here, that he got sick, that he died, and that he was wonderful despite all that.  I can’t post pictures of his birthday party or his first day of school.  I will never update his picture in my office.  All I can do is to pause now and again and remind the world that he was here, and he was loved.  He’s still my son, and I’m still his father.  I remember. 

I remember the first I saw him, rising in the doctor’s hands over the partition in the ER, the nurses scurrying to take him over to a table.  I followed mutely, or if I spoke I cannot remember the words because they had no meaning.  I remember a great feeling of awe washing over me as it registered that this had happened and the months of waiting for it to happen and the months of knowing it would happen were overcome by the staggering reality of it actually happening.  Somehow, it never seemed real until then, or rather I did not understand what it meant until then.  I never knew what it would feel like to be a father until then.  How could I have?  It was one of the happiest moments of my life.
I remember giving him his first bath in the hospital room a few hours later.  The nurse walked me through it and I was terrified I’d break him, drown him, or some combination thereof.  He was so small, and the nurse made a comment about his hair, thick and lustrous already.  People always said something about his hair. 

I remember the first time I took him for a walk, how paranoid I was about every little bump on the sidewalk, afraid I’d wake him.  James, of course, ultimately proved almost completely oblivious to bumps once he’d fell asleep, and amused by them when awake. 

I remember an afternoon I took him to the Dallas Arboretum, one of many trips, but the only one we took with just the two of us.  I tried, and failed, to pose him for a number of photos, resulting in a hilarious reel of blinking, confused, and smiling James photos that I still have.  In all of them, he seems to be wondering why I’ve been permitted to attempt this.  He’s absolutely right.  I remember giving up and retreating to the biergarten, it must have been spring, and drinking a beer him sitting in my lap, intently examining the passerby. 

I remember his laugh (loud) , his smile (wide, but low on teeth), and the way he lit up when someone new walked into the room for him to play with.  He had such a wonderful spirit.  He was so wonderfully alive, wiggling, rolling and crawling army style (he never mastered the coordination to include legs).  Engaged with everything. 

I remember later too of course.  The rapid escalation of illness from “unknown stomach bug” to “atypical teratoid rhabdoid tumor” over the course of little more than a month.  I remember James lying in his hospital bed and smiling despite the IVs, the shunt and after more procedures in a shorter time span than most people ever endure.  He never stopped laughing, and displayed more grace than I can conceive of.  He made us very proud. 


I remember my son every day.  I will always be immensely proud to have been one of his parents, and the last service I can offer him is to remember him.  I will continue to do so.  Five years later that’s what I want him to know.  We’re still here son.  We miss you.  We remember. 

Friday, July 17, 2015

Four years gone

Where is my baby? Not with his family. Not growing up, vital and alert. Not here, not alive. The truth is I do not know. I cannot. I hope. If you believe, as I do, that faith is distinct from knowledge, that is the only real answer that I will ever have.
He is not here, and the sheer wrongness of it has not lost the power to smack me in the face, to take my breath away in a crowded room (last week on the train, a family with children, one in a stroller- where is my son? Where is my son? Not here.) without any warning four years on. It happens less and I am glad for that. But it is not gone.

In my dreams, it's often that way. A group of friends at the beach, casually meandering through the day. I'm playing beach volleyball one moment and the next I'm stricken with panic. James. How the hell did I forget about James? Where did I leave him? When was the last time he was changed? Oh my god I hope he's ok. It's very rare in my dreams that he's actually gone, or that I am aware of that fact. Instead, it's as though I've misplaced him. I'm sure both say more about my subconscious than I'd like.
Often I want to write with news of triumph. The conquest of grief and loss. But the only victor in this story is James, who walked away from his cancer and pain the happiest, most beautiful boy anyone could have hoped for. There is solace in that. Indeed, solace abounds in many ways. Family. Friends. Years of recovery. The dark days immediately after James' death, the oppressive grief that sees intimidation in doorways, showers and a trip to the store has largely receded. That is not to that say that the grief itself has passed, because it has not. There is no triumph over grief. Reconciliation, perhaps. You learn to live with it, to give it a wide berth when necessary. To honor the dead in life.
I take off every year for James' anniversary. Usually there's a trip. The beach. A city with a zoo. Something I like to think we'd have done together if he were here. But the day of must be in Dallas. I went to visit James today like I do every year. I brought Eatzi's, a picnic event. Avocados on the sandwich- he liked that because they were easy to eat. And he could feed them to himself. I read to him a bit from a book he wouldn't have liked but that I was reading anyway (something I also did when he was alive, selfish father that I am).
These days are sad but in an odd way I look forward to them. It is the one day of the year that I have to spend with my son. I can let the grief breath, allow my thoughts to ruminate and find some measure of peace. For at least one day, I have not misplaced him and I know exactly where he is. I can't speak to triumph over grief. No one triumphs over losing their child. People survive, and they do it by letting themselves grieve. Some days you have to let the loss win, and that's ok. You need those days for all the others where the grief rides along with you, as it will forever, but does not drown you. 

I wanted a good mohawk James picture to put up with this but side mohawk James will do too.
 
Thank you for your continued thoughts and prayers.

Wednesday, October 29, 2014

Happy Birthday No. 4

Four years ago, the world welcomed James Camden Sikes. He won many hearts. He died too young, and he left a lifetime behind him, unfulfilled. Alive, James would now be four years old, a living breathing child rather than a projection in the minds of his family, a hazy best guess more closely resembling the "maybe" sketch on the backs of milk cartons than a child. That is a tragedy for which I continue to have no answers.

Over the years, I've made progress when it comes to projections. The milestones still come, that is unavoidable- pre-school, swim lessons, etc.  Projection is a game which has no winners, and a type of speculation that really only ends in sadness. Similarly, the eternal infant paradigm is one I do not find comforting. The thought of James eternally 8 months old, his diapers forever in need of changing, stuck with two teeth poking out of his gums, is unfair to him. He surely deserves to grow up. He did deserve that.  So I avoid projections and focus on memory.

Memories  are painful only in context. Most of memories of James are happy ones. He was a fantastic baby, absurdly cute and very playful. He loved virtually everything, mostly slept well, and cried relatively little. James was the kind of baby who earned superlatives in the hospital. He laughed easily. These memories only become painful to recall in any sense if you contextualize them in death. That is unfair to them. On their own, they are outstanding. I try to remember that.

I do not pretend to understand the afterlife, but I have always thought at the very least one might entertain their own fantasy of what the highlights are. In my fantasy, James would welcome me as the man he would have been. My son. He would tell me everything about himself, that he was happy. He would fill in all the gaps on what we missed. I would tell him that he was loved, and that we were proud of him. He was a very brave boy. If you get to choose how eternity starts, that is the best I can hope for.

Today marked the end of a challenging month. October always is. July is better because his anniversary is closer to the middle of the month, and comes shortly after the 4th, a long weekend with plenty of opportunities not to think about loss. October offers no such respite, and the slow building festive cheer of the Fall provides an unfortunate contrast. Halloween, with all the beautiful children and their costumes, is unfortunately placed in this regard. In addition, I find birthdays difficult as they represent "what should have been" rather than "what was" and in children the former seems more important.

I visited James today in the afternoon. The weather is warmer than it should be, but absolutely perfect. We shared (quite unevenly) a cupcake I brought him. I've done that before, and I always try to pick a different favor. I don't know his favorite. I read, and wandered the grounds. All our old friends are still there. The woman buried closest to James nearly shares his birthday- October 30. Someone has been out earlier, and already brought her a Happy Birthday balloon. I brought one for James as well, as I do every year.  The neighbor and her husband died a few months apart, a full life. The two "Happy Birthday" balloons dance in the light breeze beside one another, as though someone decided to decorate the tables at a surprise party. The headstones in the background are somewhat incongruous. The garden we buried James in is nearly full now, and the cemetery expanding. New roads lead deeper into the old pasture, towards the crest of the ridge the place sits on. I do not know why I spent so much time here immediately after he died, but it is a place of great comfort now. Back then, I needed somewhere safe and quiet to go with my grief, and I found it here. I survived. I worry about the tree by his grave- every year it seems scrawnier than the last. I sing him his song, and Happy Birthday.

The drive home takes longer than it should, I stayed too late and wandered into rush hour. I barely notice. Some days, like today, I feel like I am on autopilot, coasting on reflex from one destination to another. To string together enough thoughts to plan something more ambitious is simply not in me. I have come to accept that you cannot win everyday. Some you only draw, and that is a victory.

I do not have a four year old today. But I still have a son.

I miss him everyday.

Thank you for your continued thoughts and prayers.

Wednesday, July 16, 2014

Three Years

James exploring his Crib





What do you write in year 3? What is there left to say? James died three years ago today, surrounded by his family. He was, in my absolutely biased opinion, likely the best baby in human history. At the very least he had the best hair. He was very loved. His family misses him. Everyday. The wound is not gaping, however. It has scabbed, scarred, and come to resemble something that in triage might be relegated closer to the back of the line than the front. The initial trauma has passed. Coping strategies have evolved. The pain remains, but that is unavoidable. In many ways, the pain breathes life into him now. It is a reminder.
Not a day goes by that I don't think to myself "If James were still alive, then" It's a horrible conditional phrase, one reminiscent of high school algebra or very poor computer programming. The examples are endless:
Some relate to my own decisions, a conditional phraseology that attempts to recreate a now extinguished paradigm:

"If James were alive, then I would not have bought that car." I bought a convertible. It was profoundly selfish.  The car is completely useless. Then again I have no children, and therefore no need for child friendly back seats. Even so, I bought a convertible with child seat anchors. Just in case James happened to drop by.

Some relate to James himself, a profoundly unhelpful exercise with endless possibilities, all of them tragic:

"If James were still alive, then he would be in pre-school." And talking. And walking. And everything. His teeth would be coming in. He would have been four this year. He would be smiling. Growing. Sometimes the details are startling precise- shoe sizes, clothes size. Other times they are more general, e.g., If James were alive, I would know the sound of his voice. One cannot venture far down the rabbit hole. There are no happy endings.

Some days, the most mundane activities can bring it on:

"If James were still alive, then I would need to buy (baby food/diapers/etc.)" Some of these are completely immaterial now. With any luck, James would be out of diapers and have graduated from gerbers. Then again, I don't know what you buy for a our year old. That bothers me more than anything. 

But I think "If" almost everyday, one way or another. I rarely wonder why anymore- that point is moot in my mind- but I absolutely wonder if. In many ways, my entire life turns on the axis of James' sickness and death. There is before, and there is after. I cannot explain my existence in any other context. I would hardly know myself without it.

I talk to him sometimes. Mercifully never out loud. I ask him rhetorical questions, "James, what do you think of that?" I tell him about my day. "Hey James, I saw this awesome post about a hotel that giraffes live in. You would love it." Sometimes I just tell him that I love him, and that I miss him. 

The evolution from crippling sadness and grief, the kind that leaves you disappointed when you wake up in the morning not because you want to die but because you simply have no interest in continuing to be alive, to something more manageable comes in fits and starts, and never along the path anyone promises you. I do not imagine that anyone's path looks the same. I would hope not, because no one's loss is the same. 

I am not healed. I do not want to heal. I want to remember my son fondly and constantly, with joy for the time we had together. His entire family misses him and loves him. We think of him constantly. He is our angel.

For those of you who have made donations to James' fund, thank you. Last year we made a $15,000 contribution to ATRT research being conducted by Dr. Charles Roberts at Dana Farber Cancer Center in Boston. I had the chance to have lunch with Dr. Roberts when he was in Dallas, and he is absolutely committed to his work. Though the prognosis for ATRT remains extremely poor, it is gratifying to know that so many brilliant people are working to create better outcomes. Visit Dr. Robert's lab's site to learn more.

Thank you all for your continued thoughts and prayers.

Monday, November 25, 2013

Thanksgiving

James and his Uncle Patrick



The above picture is of my brother and James. My father is holding him. The band-aid on James' hand is from one of his last IVs. James has his port in this photo and fortunately he required fewer IVs after the port surgery.

When I wrote that last sentence, I immediately began writing another. My mind spiraled from James' port to the chemo drugs he never needed that it was designed to deliver, to the TPN he did need his last few days alive. From there to me taking each custom made bag of TPN out of the outside refrigerator when he died and tossing each into the trash, unable to look at them lying on the bottom rack, promising a week's supply of food and life for Sikes/James Camden. To the trash can in his room where two years later I found the empty wrappers from the many drugs we did have to give him and my strange, complete unwillingness to throw them away.

The spiraling happens. An involuntary tic, it seizes you and for a moment can take you right back to chilled hospital rooms, saline and morphine. This is unavoidable. I used to think you could avoid it, but that is a fantasy, and not a helpful one. The best you can hope for is management.  In the beginning a detour like that might cost you the day or the week. Over time you can hope to cut that to minutes or hours. The day can survive. You can survive.

In that picture my brother is engaged. Six months after James died, he was married. James was supposed to be his ring bearer. My cousin took his place. A year after he was married my brother and his wife announced they were expecting. Nine months later, my nephew was born. James' cousin is now two months old and mercifully looks nothing like James.

Life moves on. Its rhythm is singularly unmoved by your personal catastrophes. That is difficult to accept when your world implodes, but is absolutely true. There are babies littering my Facebook news feed who were nothing more than a hope or a dream to their parents when he died.

The holidays and the attendant motivation of these parents to monsterize, turkeyize, and santaize their babies in (admittedly sometimes adorable) costumes and outfits always strikes a chord. James had too few holidays. he barely caught Halloween and did not really understand all the fuss about Christmas and Thanksgiving. He spent July 4th in the hospital, though appropriately attired. The boy was always well dressed.

The first round of holidays was the worst. Unbearable almost. The next improved. The spiraling continues but can be contained. The benefit of life going on is that you can go on with it. I will never "get over" James' death, but I can have a life I am proud of with people that I love. I can enjoy them, and enjoy my memories of James. I can sing him Christmas carols at the cemetery because I believe he can hear me. I can hold my nephew in my arms and think not only of my son's death but his cousin's life. It doesn't have to be either/or.

I am thankful for all of that and for James. While I suspect I will always approach the holidays with trepidation, I am thankful that I can look forward to them now as well.

Thank you for your continued thoughts and prayers.






Tuesday, July 16, 2013

Two years

Two years. That's the number. Two trips around the sun. One and a quarter more than James ever made himself. People don't always know. "I didn't know you had kids" they'll say. I don't lead with it. "Hi, my name is Matthew, did you know about my dead son?" Conversation killer. But when they ask, I'll tell them. "Yes, I had a son. He passed away a few years ago." This answer is incomplete. Criminally so, but any explanation is.

I had a son. I had a son born with blonde highlights and dark brown hair. He came in a C-section, sunny side up. He never followed the plan well. There was so much hair the hospital nurses stopped to stare. He was very popular. I had a son I first bathed in a sink in a hospital, my hands trembling for fear he'd break. I had a son with eyes so blue you'd swear you were looking at the sky. I had a son who would not take a bottle, but who would sleep through the night. I had a son who  was a horrible napper. I had a son who was always small, but who made up for it in volume. He didn't cry often, but he yelped as soon as he was able, and often. I think he would have been quite a talker. I think about that all the time.

I had a son who liked to feed himself, though he never mastered the art. I had a son who did not like to stay still; I had a wiggle worm. I had a son who could work his way across a room one inchworm crawl at a time. I had a son who did not like pacifiers unless they came on the heads of animals.

I had a son who got sick. Small things at first. Vomit. A passing stomach bug. A quick trip to the ER. A few hits of zofran to send us on our way. I had a son who got much sicker, encephalitis masking a tumor. A tumor presaging cancer. ATRT, atypical teratoid rhabdoid tumor. I spelled that wrong the first time I wrote here. I'd never heard of it. No one has. One tripped gene in one cell, one in a million. Like wet tissue paper growing faster and faster. Wet and soft means it grows fast, too quick to attain mass and density. Faster than the surgeons could work, and much faster than chemo. Too fast to even try the last.

I had a son who smiled through it all, who fought so hard it made my heart break. Who laughed after surgery and tried to play with his lines. He always smiled, and still rarely cried, though I cannot imagine the kind of pain he must have been in as the tumor grew and snaked down his spine. I had a son who made my heart break with pride. I could not have asked for a better one.

I had a son we buried in a poplar box, special order. Wearing a orange and blue striped polo. With his giraffes, like always.

I had a son I miss everyday. I have a son I will never forget, and who I will always love.

Thank you for your continued thoughts and prayers.

Monday, December 31, 2012

Surprise

More than anything, I still catch myself off guard. A full year has come and gone without James, but I still find myself expecting him. I keep expecting reality to solidify and become made of more predictable fare, that kind that does not give itself to daydreams of toddlers and walking, speaking little boys named James; something to whitewash away memories of cancer and hospital beds, ports and tumors splashed on display screens.
I am surprised at Christmas without him. There is a palpable absence on my list of people to buy gifts for. I find myself looking wistfully at the toy aisles at stores and fighting an irrational desire to purchase a “big boy” toy to take home and put in his room. I wonder what he would have asked for if he could have asked. I wonder all of these things and I miss him terribly, with a sudden and fierce urgency that seems out of place.
The result is a sometimes lukewarm holiday cheer. I am fortunate that I have the love and support of many friends and family members. Caring, even without understanding, is a criminally underrated virtue. Yet I find myself more distant from the festivities than I might otherwise be, because I am experiencing them at a kind of third party remove, not fully committed because I simply cannot embrace them with the energy that I might have reserved for a celebration with James. It is troubling with the absence of one person becomes more important than the presence of another, but with the death of a child this is sometimes unavoidable. The family is not made to function without its parts.
Yet the world goes on. Holidays are celebrated, families grow and the calendar continues its relentless march towards the future. Immediately after James died, through the self-involved and insular lens of my grief, this seemed a great affront. The temerity of the world to continue on without pausing and recognizing how miserable it was without my little boy struck me as terribly unfair. More and more however, I take comfort in it. The world moving on means that there is always hope that good things may also happen. Though it came as a surprise in the first few months after we lost James, they do. The last year, while not without its challenges (James’ anniversary chief among them) brought unexpected joys as well. I have no doubt that the next year will as well. I look forward to those.
I will always miss him. And so, I suppose, I will always be surprised when we cannot do the things together that we would have if he were here. I will not allow that to tarnish the time we had together, and I will continue to cherish the memories we made together. More important than the fact that I will always miss him is that I will always love him. I am not at all surprised by that.
Thank you for your continued thoughts and prayers.