Thursday, July 5, 2012

Independence Day

This is James from the day after the Fourth last year. I'd post one from the Fourth itself but I've posted all of those, and I hate to do repeats if I can help it.

James was sick on July 4th. He'd been sick the day before, throwing up despite a steady stream of zofran. Oral never worked, he just threw it up. Emesis, the doctors called it. Very clinical, much cleaner than the reality of baby vomit streaked with red highlights from baby tylenol (or was it the steroids?) covering every article of clothing on your person. The day started at home. We dressed James for the parade in a red white and blue madras outfit in which he looked completely adorable. I remember being excited the night before to finally do something normal with him again, to get him out of the hospital and into something approaching a routine. It all seems so silly in retrospect. Instead, James returned to the hospital less than a day after he left it, and the only fireworks he saw were those spied in the corner of his hospital room window. The next time we left the hospital would be our last.

I went back and looked over my posts from that day last year. It surprised me what I remembered and what I forgot. I remembered the parade, the vomit, and the frustration at going back. I remembered the almost routine intake procedure at the ER, which for children with cancer serves at best as a staging area for fluids on the way to the floor. I did not put it in the blog, and I cannot remember when it happened, but one of the nurses there had trouble accessing his port. They wanted to do an IV, and we refused on principle. You do not have a surgery to provide intravenous access and then put in IV. It bothers me that I cannot remember which visit that happened on, though I can remember the nurse's face and the exact needle gauge James' tiny port required.

The things I forgot were mainly medical. The exhaustive effort to find a neurosurgery doctor to visit James on the holiday. The late night call we received from the neurosurgery resident to placate us enough to get to the next day. He was in the middle of a trauma-it was the Fourth of July after all. I remember James' eyes fluttering and complaining about it, a prelude to his seizures. I remember the particular nurse I describe but cannot for the life of me remember her name. Blond. Pony-tailed. Whitney? I think it may have been Whitney.

I wonder if I'd have remembered the medical details more if he'd lived. If he'd lived, there might have been some point to remember the particulars of his care or of my various frustrations with his doctors. It might have become relevant. If there had ever really been a chance for him to live, that also might have been something worth remembering. There was not, and so the memories become inconsequential, chaff separating the reality of his diagnosis from the inevitably of his death. The memories that rise to the surface are those more firmly rooted in him, what he wore. What I wore. I'm wearing the shirt tomorrow. The feel of him lying on my chest in the ER bed, my hand resting on his back. I very badly miss holding him.

The other thing that surprised me about the posts was how soon they were after he was diagnosed. July 4th was Day 12. We only had 24 days with him after he got sick, less than a month. In my memory it seems like a much greater gap, an elongated period that occupies far more time in my mind than it ever could have in reality. Of course, I spend more time there than I do any other 24 days day period in my life, so I suppose that makes sense. The details may fade with time, but the sensation remains fresh.

In an odd way, the priority of the memories that remain convinces me of how right the decisions I made were. I struggle with that of course, guilt has a funny way of occupying the empty space grief creates, but I remember James and being with him more than anything else. And of course that was always the most important thing. The rest could never amount to more than details.

Thank all of you for your continued thoughts and prayers.


  1. Matthew, thinking and praying for you and Kara. That is very moving about your hand on his back- so many parents take things like this for granted. You continue to be a wonderful loving parent. We don't have 4th of July here but I imagine it to be like Australia Day- a public holiday that can be hell for those who are lonely, alone or in pain xxx

  2. I never tire of seeing pictures of your James. I am so sorry.

  3. Your words are always so beautifully written, so full of love. I am so sorry James isn't here to experience the holidays with you and Kara.

  4. I'm sorry you have to miss holding him. I'm sorry for the ache that every "this time last year" brings. My hope is someday there will be some "this time next year"'s. Keep holding on.

  5. I pray for the freedom from guilt that surpasses all understanding.

  6. James was such a beautiful baby! Love seeing his daughter who is 7 always asks to watch his video :) I wish things had turned out differently for you...I am so sorry for the pain you are going through missing your sweet little guy...
    Hugs and prayers always from Nebraska

  7. My heart just aches every time I read your blog. Thank you for sharing your beautiful boy with the world - what a precious, darling baby. Please know prayers are being said for you in Pittsburgh, PA. May our God Who is mighty to save be with you and Kara tonight. May He quiet you with His love and rejoice over you with singing (Zeph. 3:17).

  8. Matthew, I do not know you, but I feel I know you and I'm getting to know Jamsie. You express yourself and your loss so well through your blog. My heart and prayers go out to you in your grief. I hope that you will go to and see where there are some GriefShare groups near to where you live. There are thousands worldwide. It is a wonderful, Biblically based grief support program. Maybe you and Kara will find it to be a blessing to you too. Also, there is a great weekend retreat led by Nancy and David Guthrie, who have lost two children. Do check it out.
    .....prayers from Maryland go up for you in your grief.


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