photoWe have been away for almost a week. There have been ups and downs. At the start things were fairly smooth. With time, they got rougher. Claire’s eagerness to be doing something gave way to fatigue, a horrible cold and two very trying seizure filled days. We’ve tried to make the most of it. Jared and I have taken turns having fun with Chloe and that helps. Still, it’s hard to feel right now. There is no pleasure in knowing that we are taking one of the first steps of the thousands that will lead to a cure for Rett syndrome. There is no pain as I hold Claire with an ashen face as her body stops convulsing. I have tried to stay connected, to feel it all but I have become naturally numb. Living this vulnerable seems to be more than a fairly stable brain can tolerate.

It’s more than I can process in an unfamiliar environment. I wish I could post about how awesome world-changing is and the hoards of miracles that we are witnessing. Right now we are trying to keep Chloe entertained and get Claire healthy for our appointments Tuesday and Wednesday next week.

It’s definitely an adventure and we are certainly in Rettland. I can’t feel much right now but I know we are doing the right things. I have no doubt. As hard as this is, doing nothing, seeing no change, that would be worse, so today, we just keep swimming.

5 thoughts on “Numb

  1. corieclark says:

    Love you. Thank you for sharing and being vulnerable. And it’s ok to feel nothing. You’re human. Better to know you feel nothing than to not know and not care. Praying for a successful week for your precious fam.

  2. melelllan says:

    Reblogged this on Trail To A Texas Trial and commented:
    When you are changing the world, it’s not all roses. I know when I was in Texas there were days that I wished would end, that were so hard. Bravery isn’t always charging head on, sometimes it’s just trying to get through the moment.

  3. Linda Williams says:

    My prayers go out to you in your every day struggle to attain a healthy life for your child. Sometimes, in the midst of weariness and frustration, a hug is the best gift we can give our child. It says so much–I love you, I understand, I’m here. I wish I could hug each of you and pray that today will afford you a few moments of rest and play.

  4. Debra Steele says:

    What an inspiration you and Jared for the rest of us. I pray for your strenght and perseverance.
    Your children are truely blessed to have parents like you.

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