Why I Won't Say I 'Believe' in a Cure for My Child


I was recently asked if I was confident that a cure for KIF1A would be found — and the way in which I was asked was very nearly a rhetorical question. “And you believe that a cure will be found, yes?” My answer, though, was not automatic. An enthusiastic “Yes, of course!” did not spring to my lips.

But how could it not? How, when my husband has made the fight for a cure his life’s mission, how could I not say yes? How, with active campaigns funding the search for that cure, campaigns for which we have gratefully asked and accepted the monetary help of our friends and family, how could I possibly pause?

But pause I did, and when I was able to speak, my response was shocking even to myself. It was a “no.” No, I don’t believe in that cure. However, that admission — and I know it dismayed the questioner — is not one of defeat. I am not hopeless, nor do I consider myself a pessimist. I am so very thankful for each of those donations, as I am understanding (or I hope to be) of every minute Luke spends in communication with the clinical and research teams, and my goodness, yes, I know it all needs to happen.

But I couldn’t and still can’t say I believe in a cure, because to say or feel that would mean I would have felt one was needed. I would have to say and believe that my sweet girl needed curing.

And I don’t.

I look at her and I just see my girl, our beautiful daughter, our son’s silly sister, the extra-loving friend and devoted granddaughter. I see and feel every bit of her, and all that love, and all the attention  her body and being needs — it keeps me in the here and now. And what’s here and now, to me, is just perfect.

I couldn’t imagine needing to cure a thing for this perfect girl of mine. Is that denial? Probably. Yes, I know we need a cure.  I know we must fight for it; there is nothing more important. And I think we will find a cure, sure I do. If anyone can get us there, it’s our research team, physicians, and the strong KIF1A families. So do I think we will? Yes, yes, yes. That’s all brain.

But to believe? I can’t do that, because believing in something — that’s all heart, in my opinion. And my heart tells me to accept and adore my child as she is, and I can’t bear to believe that she will ever be anything less.

Can there be any teachable lesson in this admission? I’m not sure, except I will say that I don’t think denial (I’m definitely practiced in it) is always a bad thing. Maybe allow your heart a little space from your head, and stop the inevitable downhill spiral from playing out in front of you like a bad movie you can’t stop watching.

Turn it off, and be in the now.

Love that child, every last bit of them, and immerse yourself in the world of tooth brushing battles and bedtime snuggles — whatever your “now” is, and however much of it you can get.

I can’t let myself stop.


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