Tuesday, April 24, 2012


This is James from St. Patrick's day last year. He's on his second outfit of the day. We took him to the Greenville St. Patrick's day parade. Neither Kara or I are from Dallas, and neither of us had ever been to the parade before. Spoiler alert, but it's probably not the best venue to bring your five month old to. Wait 21 years, then try again.

It's funny how days like that stick in your mind. We got James ready early, but despite living less than a mile from the parade site had no idea where the parade was. Much to my bewilderment but probably appropriately, Kara insisted that James wear his sunglasses. He looked incredibly cute in them, his gummy smiles complimenting the frames. James had these big beautiful blue eyes that I always thought very striking. Kara and I both have blue eyes, but while mine are grayish and somewhat muted Kara's are a lively and almost turquoise color. It was one of the first things I noticed about her. James' were an odd, icy blue color, a combination of the two I always found striking and insisted took after my own. They really did not, I think I just possessively wanted at least some part of him to take after me, as otherwise he so strongly resembled Kara. The sunglasses made him look so different, like a whole new boy. I kept the picture as the wallpaper on my phone for months afterwards. I replaced it with one taken shortly before he died that's still there, patiently waiting for something important to happen, though nothing as important as James ever seems to.

But back to the parade. We tried the wrong part of Greenville first, a part which was blocked off, but not for the parade. It was blocked off for a temporary, holiday inspired relaxation of Dallas' open container laws, a block wide conflagration of drunken revelry, Bourbon Street for a day. The officer politely directing to us to the correct location gave James and us long looks, which should have been a sign. It was not. Before our first exit from the car to swing and miss and the wrong location, James made a huge mess and we had to change to his second outfit for the day. We tried again farther up the street and finally succeeded in finding the parade. Vast throngs of drunken revelers littered the streets and all seemed quite appreciative of James. We found a spot in front of the lingerie emporium (classy!) by Baker's Ribs and settled in to watch the parade. It was fun, but probably would have been more fun if I'd grabbed a few beers beforehand. There were other babies there, all like James completely oblivious and content to watch the adults with quiet bewilderment. James found a spot on my shoulder and we watched the sponsored floats make their past us. James was never fussy about crowds or loud noises, equally happy falling asleep in his room or at  crowded parade. After a few hours we made our way bck to the car and home, one more experience checked off our Dallas bucket list.

That was over a year ago. It's strange the details that stick with you. I could not tell you what we did the next day, or what outfit James wore the following Wednesday, but for some reason I remember with almost perfect precision every moment of that parade. I remember the way James' head felt on my shoulder. I remember the toys we gave him to play with and the bored way he surveyed the proceedings. I remember the party-goers in the high-rise office building across the street, making use of their office location in what must be the most enjoyable day of the year in that office. I remember where we parked, on University that I did not yet realize turned into Trammel and therefore offered a more direct path to my house. I remember the sunglasses I wore, Ray-Bans that I'd step on and ruin a few months later. I remember each of the outfits we changed James into as he casually destroyed each in turn. I remember the commentary I delivered to him as the parade drifted by, and my pointless explanation to him that he was just Irish enough to celebrate. We left and went home.

I sometimes wonder when the tumor arrived. I wonder if there was an exact moment when the cell mutated and why it happened. What caused it? I wonder how we didn't notice. It's a silly thing. ATRT and James' ATRT in particular represent one of the most virulent pediatric brain tumors around. Given how quickly James' tumor regrew after his surgery and the fact that his CT scan two months before his diagnosis was clear, it's almost certain that James' cancer did not arrive until shortly before his death. It did not fester inside of him for months before it manifested, it arrived quickly, debilitated him, and killed him.  There was nothing to notice before it was too late, because in James' case as soon as it happened it was too late. We just didn't know it.

Still, when I think back to days like the parade I catch myself wondering if it was already happening then. This is irrational, but it's still there. There's nothing rational about grief. The rational part of your mind is designed to collect data and translate that data into an answer. Grief defies the this kind of reasoning. There are no patterns to discern, neither deductive nor inductive logicleads to an answer. The only piece of data is death. There is no logical explanation.

Snippets of memories fill the void instead, disjointed and out of time that the mind cannot help but try to work into a narrative. But there is no narrative. There's only what happened, and what you do with that. There's no overarching theme or unifying theory of survivorship that links it all together in a neat little package. Instead, there are just memories like the parade and a thousand others, snatched out of chronological order and playing on loop. There was a time when I tried to categorize these, and obsessed about the whens and ifs I outlined above. I'm a bit better about that now. The thoughts are there of course, but I find that in isolation the memories are more enjoyable, that the memory of holding James on my shoulder on a March afternoon doesn't have to link into a larger narrative. It can just be that, and the simple joy of it need not suffer for everything that happened later. There are thousands of memories like that, and each has value on its own. There's no sense diminishing each by trying to make them all matter in the story of his death, because that's not the bigger story. The bigger story is James himself, in all his uncomplicated wonder. Of raising him and loving him. The end of the story is just that, the end, it's not the morale.

Thank you for your continued thoughts and prayers.


  1. Matthew:
    I do not know you, nor do I know Kara. And as I sit here I cannot remember who asked me to pray for you and your son, including a link to your blog in their email I presume. No matter how that connection was made, your words resonate deeply.

    When you write, "there's nothing rational about grief. The rational part of your mind is designed to collect data and translate that data into an answer. Grief defies the this kind of reasoning. There are no patterns to discern, neither deductive nor inductive logic leads to an answer. The only piece of data is death. There is no logical explanation", my head, heart, and spirit nod in agreement.

    Beautifully tragic truth. Thank you for sharing your journey.

  2. Thank you for continuing to share your thoughts and memories of James. He was, is, and always will be such a beautiful boy. You and Kara are always in my thoughts and prayers.

  3. Your express your grief so very well. And you are right - each precious memory has unique value far aside from the "narrative" of his life. I've found myself, many times, trying to figure out when it was that our Babygirl got sick, and how we could have not noticed for so long. But each of our memories of healthier times need not be clouded over by what we didn't yet know.


  4. Thank you for continuing to write about your sweet boy! I still pray for you and your wife daily.

  5. Your memories are so precious; it is tragic that they bring you both joy and tremendous grief. May God continue to work in you and heal some of your pain.

  6. Powerful post! I'm praying for you and Kara! James is such a beautiful boy!

  7. I continue my nocturnal visit with curiosity and pleasure.
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