Saturday, September 24, 2011


There is a picture on my- James’ iPad- of James smiling. It’s from his newborn shoot. There are two different pictures of him on the iPad. One is the smiling picture from his newborn shoot. He’s looking at the camera from his side and his eyes are wide open, mouth open, gawking at the lens. During the shoot we paused several times to try to lull him to sleep. The best, or most classic, newborn pictures are those of the sleeping, innocent child. They are designed to capture the child at his most innocent, before age and time wash away the wonder of a sleeping baby and leave you with a smiling child. James refused to sleep during his newborn shoot. We tried feeding him, rocking him, warm blankets. He knew better than to sleep, even at 11 days old. James didn’t have time to be that kind of baby. I think he knew that. He never napped much, he was always wide awake. His eyes were incredibly alert, just as they are in that picture. He always seemed so much more engaged than I thought a baby would be. Perhaps it is only that I was his father and I need reasons, explanations to provide some theme so I can justify things in retrospect. But I think it was more. The other picture on the iPad is the wallpaper picture. He’s smiling at the arboretum, sitting in front of the tulips, a hand outstretched to grab one. Joy came so easily to him, to my wonder and relief.

My Dad bought the iPad while we were in the hospital. James loved to play with phones, my Dad thought that the iPad would be something fun for him to play with during chemo. James had a tactile fascination for how responsive the touch screens were. He marveled at how easily he could manipulate them. The iPad was something we could use to entertain him during the hundreds of hours we’d spend in the hospital while James got his treatments. We eagerly loaded it up with every children’s app we could think of. Doodling apps, PBS Kids, Disney, Rattles, and more. We researched the “top” kids apps and downloaded them all in James' hospital room, liberally abusing the Hospital's free Wifi. We consulted the nurses for advice.

The apps mock me now. Eveytime I turn the iPad on to fire up hulu or check my e-mail, I feverishly scroll to the last screen where I’ve stashed all the non-kid apps. Past Elmo, the Christmas Rattle, and the Doodler James once used to trace lines across the screen. I don’t always make it. Sometimes I’ll be a touch slow, click on the doodle app and wonder that my son was once alive enough make the doodles here. I e-mail them to myself, over and over again, because I always want them at the top of my inbox, as if he just drew them the over day. If I spend all my time on James I won’t do anything else. I won’t ever delete those apps of course. I won’t do anything to materially alter the IPad, that’s inconceivable. It belonged to James, and is therefore sacrosanct.

The iPad is just one reminder. A symptom of a larger, intractable problem. A reminder of a hope, dream, and future I once had that will never be. No hours of chemo, no need to worry about ways to entertain him through long hours. No need to worry about infections. The hard work I spent studying the notebooks the chemo nurses gave us, harder than I ever studied for any exam, wasted. All of this made still more frustrating because I spent time on that instead of with him. All of these are reminders that there is nothing left of James to hold onto. The feel of his hair, the tenuous strength of his fingers grasping yours. All of that is gone, with his piercing eyes. There’s nothing to hold onto. I’m left with his newborn photo, James stubbornly mocking the photographer and refusing to sleep.

That’s not to say that there aren’t comforts. We have had a great many. James has left a legacy far greater than anything we dreamed possible. I am moved by the responses that his story has generated. Still, when I’m flicking through the touch screen to avoid laying eyes on the doodle app, I can’t help but wish I was reading a blog about someone else’s life. Someone else’s child, and not writing about my own. I would never wish what happened to James on anyone else. No one should experience this. I just wish it didn't happen at all.

As always, thank you for your prayers. They are a continuing source of strength.


  1. every time i see these pics, i am so grateful that i was able to be a part of your and james' life <3

  2. James sure was special!!!
    Thinking of you all and praying for comfort.

  3. I continue to pray for you both.....knowing the God of all comfort will hold you forever, as you miss James....knowing His strength is the breath in the night when darkness is deeper than the quiet, and that His joy is knowing that Christ has overcome the grave, and you will see James again.

    and this life is so short compared to our life forever, Eternal.

    With prayers,
    ~ Jean Marie

  4. As much as Jamesie has influenced so many people, I do wish that he had never gotten sick and that you never had to experience losing him. I wish nobody had to go through such pain. I cry whenever I read through your posts and yet I come back almost every day because your son's story has made me care about the two of you as well. I pray for your family as well as my own when I look at my giraffe necklaces. Prayers for some measure of comfort for both of you as you take it day by day.