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Grieving the Loss of a Hypothetical Child

I grieved after Penny was born. I wish it weren't true, but I can't deny it. I know, I know. It was a normal response, and I needed to go through it in order for things to change. Actually, one of the most challenging aspects of writing A Good and Perfect Gift was revisiting my emotions from those early months of Penny's life because they now seem so foreign and, as I've written before, so ugly.

Oftentimes when I speak publicly about Penny, people seem to assume that the grief is still there. I tell people I have a daughter with Down syndrome, and sometimes they say, "I'm so sorry." Or they ask, only about Penny, but not about our other children, "Is she functional?" with a sympathetic tilt of the head. And I try to remember that I used to think the grief would remain, even if in a muted form. I used to assume that some measure of those initial feelings of shock and sadness and anger would linger and permeate the present day. But I was wrong.

I think the reason I no longer feel grief in relation to Penny is that I mourned the loss of a hypothetical child. I never grieved the loss of a real child, in which case of course the grief would be permanent. But I was mourning a fiction, a figment of my imagination, the Penny-that-could-have-been (who couldn't really of been, because she is who she is with this extra chromosome).  As a result, once I worked through that grief, it really was gone. Grief usually comes from loss, and when I realized I hadn't actually lost anything–or anyone–the grief not only disappeared, but it was also transformed into joy.

There's another sort of grief that can come with any child, but particularly with children with disabilities. That's the grief that comes when life (usually in the form of other people) is not kind. This grief is born out of love, not loss, and although I'm thankful to say that we haven't experienced much of it on Penny's behalf at this point in her life, I also know it will come.

So I know that I will grieve on behalf of all my children, on behalf of any and every one I truly love. And yet I also know that I no longer grieve Penny's birth. It took me a while to believe it, but now I know I didn't lose anyone when she entered my life. I simply gained my daughter, for whom I am forever grateful.

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