If only…

Ellen wrote a wonderful post yesterday:

Ever wonder about the “normal” version of your child?

I think it’s a realy great question and the answer, a clear, resounding yes.

When Nathan was smaller I used to think of this often. I would look at his typically developing friends and cousins and it was like someone would stab me with a knife and twist it slowly. I would see them running and playing and see what Nathan should be doing and it would just hurt like crazy. I remember one day were were at a little gathering with Nathan’s little friends and I just walked out the door and left in the middle because it hurt so dang much. You watch them run and scream and jump and create the cutest sentences and you can’t help but think of the normal version of your child existing in a parallel universe who is doing exactly those things.

I don’t think it’s something you can ever stop considering.

What changes is how you deal with it. I can say that with every passing year, month, day, I get a little bit stronger, a little bit clearer about my mission, Nathan’s mission in this life. The percentage of times when you feel kicked in the stomach slowly reduces. Whereas before it would happen often, now it’s only rarely that I feel that intense pain.

Most of the time I just don’t go there. It’s like that deep dark alley in a bad neighborhood – you know better than to go there.

So I just don’t allow my mind to even think about how things would be different if Zic2 hadn’t mutated. Sometimes the thought comes barging in the door and it’s out of my control to avoid it. Most of the time when that happens I think of all the wonderful things that Nathan is and I know many of them are because of Zic2. I think Zic2 have made him a very special, empathetic soul. So I rememer that and then the normal Nathan doesn’t hurt. It’s almost like having a different child. You think of the typically developing child and there’s no way that child could’ve been the child in front of you because every moment determines the next and what we do and our limitations determine who we are.

So most of the times now I allow that child in a parallel universe to run and play in his own little world, while I cuddle the one in front of me and appreciate everything he brings to the world, to my world. It just seems like more and more I understand that there are no accidents and that my dragon warrior has his own mission that’s different from others, so the fact that he’s not doing the things other kids are doing just doesn’t bother me much. It’s like asking the cheese why he doesn’t taste and smell and feel like fish. You just wouldn’t do it. More and more that’s how I feel.

But of course there are always the mornings when I’m dead tired and sick and I don’t want to do yet another therapy or worry about making sure he gets all his supplements, that we do the masking, that I don’t forget yet another appointment, when I just don’t want to fight his resistance to nap in his hbot chamber, etc etc etc… and if I’m tired and depleted enough I do look up at the sky and say, if only if only if only.


  1. ToTheMax says

    What a beautiful post. It made me cry.

  2. Administrator says

    Thanks Ellen, and thanks for the inspiration.

  3. Hi Marcela,

    I haven’t been through what you have. I have had only a glance at that when my kids stayed after birth 3 months at NICU, and were diagnosed with CMV that could result in terrible things. But I’m always here for you and I’m always here to listen and give you a hug and tell you that you’re amazing.


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