Wednesday, January 20, 2010


Last Saturday morning little Jamie Knotts lost her fight. Jamie, whom I'd visited twice in the hospital but never had a chance to hold. Jamie, called a "love magnet" at her service on Monday.

I can't tell you how often I've thought of and prayed for Jamie and her family these last few months. Part of that was the nature of the situation, the fact that Kelly is my friend and that I, as with so many others, of course wanted to see Jamie healed and well. I also felt a certain connection that is hard to explain. Jamie was diagnosed just after Ethan was diagnosed. In a very different way, the Knotts' world was also turned upside down. And yet they faced their situation with incredible grace, strength, and courage. I could feel God's peace all over Kelly when I went to visit at CCMC. I walked away thinking, "I want that." And "If they can be brave, I can be brave and take what God has handed me."

Lyssa and I were talking one night about the two situations and how they were each so difficult, in their own way. I kept rolling it all over in my mind. Which was worse -- to be told your child has a possibly fatal illness, but she might be completely cured from it, or to find out your child would have a lifelong but not life-threatening disability? The questions are almost sadistic in nature, like those ethical questions we've all been asked (i.e., if my child and my husband were drowning and I could save only one, who would I choose?). But still I thought about it. In the days when Jamie was doing well and treatments seemed to be working, I felt a longing...for her family; for ours. If only. If only I could be brave enough to go through something horrible and then learn Ethan would be completely okay. I've known numbers of children through my work with Baystate who fought cancer, won, and have gone on to live full lives. One is getting married this summer. Their cancer is a long-ago bad dream. I thought that maybe, just maybe, that would be Jamie's story.

But no. Kurt and Kelly were asked to walk the unthinkable path. They had to kiss their baby goodbye. They held her for hours, waiting, praying, wanting to keep her here but wanting her peace even more. Devasating. Heartbreaking. Really, there are no words.

This week Ethan has been sick with a pretty bad virus, and he only wants to be held. I've smoothed his feverish cheek against my face and thought of how I've missed, while he's been sick, all of the little nuances that make Ethan, Ethan...the books he likes to read with us and his puzzles and trying to sing Old McDonald. The way he chases Anna through the tunnel, plays hide and seek, and follows after the kitty, trying to pet him. His huge smile that lights up his eyes and his entire face. Ethan has wanted me to hold him so much this week, there are times when I've grown tired and irritated with the whining. But then I think of Kelly, who said that when Jamie became sick Kelly missed being able to hold her. She missed her fussy baby who from birth had seemed to never want to be put down.

I know now. Was there ever really a question? Living with a child's disability is not easy. It can be downright painful. But nothing is more heartbreaking than a mother's empty arms.

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