Monday, November 25, 2013


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.