Monday, November 14, 2011


I'm loading all of the pictures onto google. Trying to inoculate them and keep them safe permanently from the forces of the world. Broken hard drives, lost phones, and power surges. All of these are too fraught with danger for pictures of my James. Completely unable to protect my son in the flesh, I will immortalize him digitally. I will create a permanent record of these memories that cancer and nothing else can touch.

You can see him getting sicker in the pictures. There's an odd chronology. He's smiling, and then slowly becoming more distressed. He comes up in the hospital pictures at first miserable, but we're documenting it because it's a milestone- Baby's First Time in the Hospital- not because he had cancer. I still remember checking in at B6, toys in hand, joking that we were in for a long night and wondering if we should take bets on when the doctors would show up. I sometimes have a real problem taking things seriously. I never imagined we'd make our way to the PICU in less than five hours.

The pictures create an odd sort of timeline, one evolving into hell. A picture of his insurance card I sent to Kara to take him to the doctor with. A picture of him in the Medical City emergency room lying on Kara's chest, back when we were trying to take care of dehydration that was never the problem, and the least of the symptoms. In his Moses basket before we went, perhaps the day before, crying because his head was splitting apart and no one knew. I feel so guilty I did nothing to help him, that I didn't know what he was trying to tell me. In a Mavericks shirt Kara bought him from a street corner, his one and only championship. He's sick but still trying to laugh. The tumor never managed to rob him of his joy. Now the picture show that he's in the hospital, now we know. He's playing despite the drain sipping fluid off his brain- we're struggling to keep his hands clear of the wires, which he naturally found fascinating. A giraffe in hand a bright smile- never mind the the wires, the drain, or any of it. James didn't have time to worry. He loved to play, He loved everything.

Now he's had his surgery. Poor baby, but he's still so happy. He was never the same after. He never managed to get completely well from the surgery, but the tumor did. He never had the time, he wanted to, he always did. He fought so hard. I am proud of him. Prouder than I've ever been of anyone of anything. Now the port's in him and we're spiraling into the last few weeks. Days are precious but we don't know it, we're ignorant to the future. We still have hope. We still had James. Now it's too late- he's at home and in his moses basket again, but now he can't cry anymore. All he can do is rest, and wait. Now we're just clinging to hours, desperately trying to freeze time. When I think about it now I feel guilty for sleeping. I only had so many hours and I wasted at least a few sleeping, when he was still alive and breathing. He woke up the morning he died having trouble breathing, I wonder, if I had stayed up that night, would I have noticed when it started? Could I have done something? I should have known better, done things differently. I feel guilt because it's better than loss, it's easier to blame yourself than to acknowledge there's no one to blame.

So I'm memorializing all of it, every picture on my phone, in my possession, or anywhere. I will test and break gmail's limit, and after that I'll find somewhere with enough space to store it all. Physical storage, like the flesh, is too weak to be trusted. Of course the internet itself is just as impermanent, only as reliable as your connection and your power supply. There's no safe place but my mind really, but we may as well double up on them.

A few weeks ago I lost my phone. I subsequently recovered it, but while it was lost I kept worrying about it. I had everything backed up, but I kept worrying I must have missed something. What, I didn't know, but that didn't stop me. It also made me worry about the reliability of purely physical back up. What if something happened to my phone and my computer? In response I've begun digitizing.

When your child dies, you become all too aware of the value of the pictures you do have. The timeline is frozen, and your experiences are ended. Therefore each picture, and you know exactly how many there are, becomes precious, a treasure. There will be no more, and you know that each and every one is precious. Each pose, each smile, every second of video. You once took the minutes casually, watching him and not recording. Now it is all essential, it is all unique. The fear is forgetting. Preservation becomes a goal in and of itself.

On one level this is all pointless. My son is not, and was not, the sum of his pictures. Each and every day of his life he was more- a gift from God uniquely blessed. Each of those days was a gift. We were blessed to have him. We were honored to know him. Still, a certain paranoia infuses everything, a need for preservation. It's more for us of course. James has no need of it. It's just something to do. Something to remember. As with so many things these days, I'm finding that the goal isn't necessarily what you want, but what makes you feel a little better. It's not about huge victories, but small ones scattered throughout the day. There's no epiphany, just an assortment of moments that move you forward.

Thank all of you for your continued thoughts and prayers. Today marks 4 months from the day we lost James. In a few articles I've read, they've suggested 4 months is a magic number, the number of months by which it starts to make sense. I don't know about that. But I do know that we've been blessed with a lot of support, and I thank you for that.


  1. Praying constantly for both of you... and check into carbonite for online storage. :)

  2. Hugs and prayers! Love seeing all the pictures of sweet baby James!

  3. Thinking of and praying for you & Kara.

  4. I'm so sorry Matthew. James is so beautiful. I'm sorry he's not in your arms any more. I'm praying for you, Kara, and all of your family members.

  5. Still praying for you. All the time. James is a magnificent boy. Thank you for your honesty and vulnerability. We hurt for you Matthew. And Kara. And your parents. And everyone that ever had the great joy to know James.

    I love what you said about each day with James being uniquely blessed. How true! James is a blessing! He continues to bless you and your family. He blesses all of us in cyber-world. He blesses all of the children that will benefit from research made possible by the Foundation. And let's be honest, with that killer smile and perfect hair, he is blessing everyone he meets in Heaven. James is a unique blessing every day of his sweet, beautiful existence, whether here on earth or in Heaven.

    We pray bold prayers. We pray that God brings you peace and understanding. We pray that God returns abundant joy to your life. We pray that every day, Jesus wraps you in his arms, holds you tight, and lets you know that he is taking care of your sweet boy until you get to Heaven and take over the job.

  6. Four months, no, I wasn't able to function, though I did at work. After four years, I no longer embarrass myself by crying at my desk over a remembrance. These beautiful, beloved children frozen in time and imprinted forever on our hearts is life at its cruelest.

    Thinking of you and Kara, Matthew, and as always praying for the impossible, comfort from this nightmarish hell even if for a minute and peace for you both. Sending you love.

  7. I continue to think daily about your family. I often am at a loss for words as I read the thoughts which you and Kara so eloquently express. I hope you will continue to support one another through this horrific experience.

  8. I call B.S. There's nothing magical about this situation. I know however that God's mercies are new every day.