A Sad Day in the World of T-18

I just found out that Alice, a little girl with T-18, passed away this morning. Her mother, Sara, was one of the first to reach out to me with Lily, and we have spent the past two years emailing each other back and forth, airing our frustrations, celebrating our joys, and sharing advice. I consider her my friend.

It was Sara who shared with me her experience with bottle feeding Alice when we were trying it out with Lily. I can remember when we went to Tennessee when Lily was about six weeks old and finding out that Alice was turning one and how I thought it was such an accomplishment. Sara and I shared many a story about vomiting and constipation and congestion and how absolutely frustrating life raising a T-18 child can be, but we seemed to be good sports about it. That's one of many things that endeared me to her. And Sara, like us, just wanted life to be as normal as possible for Alice, and that, too, endeared me to her.

My heart breaks for Sara tonight, and I come to this blog, not to dramatize, but to sort out my feelings and lift them out of my self. Oh, the fragility of life. . .

And Alice. . .such a beautiful, curly, blonde-headed little girl. She gave me such hope for Lily. Such a fighter. She would have been three on Friday.

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Dear, little Alice, fly high my sweet child. Kiss all of those other angels you meet tonight. You will be greatly missed.