Kingly News

News and views from a strange, continuing journey

Cold technology, warm tears

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We are connected to a virtual community of families graced with children with disabilities. Janet stays in touch more than I do with these folks scattered across the globe, most of whom we have never met and yet to whom we feel so connected. She has been telling me for a few weeks now about a family with a disabled boy in the very clear process of dying. They knew it was coming, and yet held out hope, as I guess we all must. The boy died a week or so back.

I’m not revealing names because I don’t want to intrude on their grief. But they were kind enough to add me as a friend on Facebook, and I can’t tell you how wrenching it is to read the timeline of posts, knowing how it turned out and yet finding a part of me hoping that it will somehow turn out differently than it did. People ask what the prognosis is for Hannah, and the reality is that her condition is so rare, no medical database exists to give any realistic idea. It is truly one day at a time.

I cannot read this material without crying, and yet I cannot not read it.

At the risk of invading their privacy, I share with you one post from his mother I keep returning to.

I think I would give every dime I have to just have one more day–not 10, just one is all I would ask for. I would spend it giving him a bath, rubbing warm lotion all over his body, he loved that. Then we would just hang out and listen to music.

Today, she posted this (note: it is not a photo of her son, but a piece that she herself “borrowed” from somewhere else):

If you can’t read it, the text says:

Your little boy cries too much.
My little boy makes no sound.
Your little boy sleeps warm in his crib.
Mine lies cold in the ground.
Your little boy woke up today.
My little boy never will.
Your little boy laughs and plays.
My little boy lays still.
Your little boy makes you proud,
But just as proud am I,
For your little boy will learn to walk;
My little boy can FLY.

May each of us love and treasure each moment that we have with those we love.

Written by Donnell

February 26th, 2010 at 3:24 pm

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