Dear God, What Have We Done?

Dear God, What Have We Done? September 9, 2014

**I’m not looking for platitudes or reassurance here. I’m just giving you a window into the mind of a mom of a child with a chronic illness.  Prayers are always welcome. Telling me why what I’m feeling is wrong is not.**


Today marks one week until we see the geneticist. I’m fighting like hell to be positive and upbeat, but the panic attacks which happen dozens of times a day tell a different story. I’m terrified.

I am way beyond wondering what happened to the ferociously perky and determinedly healthy daughter of the past. Her sassy spirit remains, but the healthy vitality of childhood waxes and wanes. I miss the girl we had with an unspeakable ache, but I cannot allow myself to go looking for her. I have only the energy for the girl we have today.

Today she is in a chair. Today she is tired. Today she is hilariously funny. The funny is enough. It has to be.

And yet,  next week may bring us closer to knowing what has happened, and I’m afraid to know. They will take her blood, and mine and my husband’s, and look for answers. A preliminary phone screening revealed that I have markers for genetic diseases, but not which diseases…. Yet. Markers in me don’t necessarily mean disease in her, but she has some of the same markers too.

There is an awful place when someone you love is sick where your prayer changes from “please don’t let them find anything wrong” to “please can we find something so that we know?” We want answers, and yet, at the same time, we are terrified to hear them.

Please can it be injury or disease? Please, dear God, can it be something other than genetic? It feels awful to wish such things on her, but something is already clearly wrong. A child doesn’t go from running and jumping to unable to stand within a week’s time unless something is wrong.

So please can it have come from outside of her? Because I don’t know what to do with the thought that this child created out of love was also born of some kind of toxic soup of us. I don’t know how to process the knowledge that she is crippled simply because she is ours. We will make peace with that awfulness if we have to, but I can’t fathom that pain today.

I guess the truth is that we want answers, but only if they are the right kind of answers. If they aren’t, then I want nothing more than ignorance. And ignorance I already have, until next week.

And, Oh, dear God, I can’t breathe from the weight of it all. I look across the room at her atrophied legs and wonder if that has come from us, then look around at the gamboling litter of children who all carry our genes…and I swallow hard at that lump in my throat which never quite disappears.

So for now I’m praying, not for answers, but for peace. The answers are coming, ready or not.



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