We lost her before we lost her. The evening the doctors told us that her heart was so deformed, we lost our healthy baby. We received in her place a very different baby, a difficult one, a scary one, a beautiful and infinitely precious one, but we had lost our healthy baby.

And the losses kept rolling in.

I lost breast-feeding when she wasn’t able to eat enough to stay a healthy weight. And we gained formula with extra calories, feeding tubes, and syringes.

We lost sleep. Oh boy did we ever lose sleep. I am convinced that lack of sleep is the short bus to insanity.

We lost every milestone she missed: sitting up, rolling over, crawling, standing, walking, talking, eating on her own, singing in the kids’ choir, riding a bike, swinging on the swings and learning to pump herself, piano lessons, chores around the house, swim lessons. And every time one of her friends reached one of those milestones I was a jumbled mess of happiness for them and mourning for us because I knew she would never do the same.

We gained so much with our daughter – new perspective on life, fuller appreciation for the little things, courage, fortitude, friends we’d never have met otherwise (both at the hospital and at school)… but it was costly gain.

And then, in the end, we lost her. At eight and a half, she suddenly disappeared from our lives early on a Sunday morning, and my children lost a sibling.

our four children in 2008

Some Fridays I participate in a writing prompt with The Gypsy Mama. She gives us a topic and we write, unedited, for only five minutes. Then you click “Publish.” Today’s prompt was Loss.

For more on our story of special needs and grief, start here.

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