It’s no secret that it’s been a very long few years for us, about 8 actually. Last night we were talking over past July’s and how trying many of them have been. While life is still hard, it’s so good right now. Despite several days of just trying to keep Claire alive, I feel at peace. It’s the sort of peace that doesn’t make sense and it didn’t come in the middle of the storm when I asked for it but it is here now. My body aches from holding her while she convulses and my brain is tired from the million details of care and planning for the upcoming trip, yet more than anything I feel content.

For years each day seemed like a fresh form of hell, never knowing how my heart would be broken, what difficult things would be thrown our way. On some level, that hasn’t changed. Claire still has Rett syndrome and the scoliosis, epilepsy and dystonia that come with it among other things.

What’s changed is that we dared greatly and it’s been awesome. We had the choice to take the risk of being in the trial. Now, I can say with all certainty, that we have done everything within our power to help Claire and for that matter Chloe too because she desperately wants more of her sister.

I never would have imagined being this completely depleted and absolutely full at the same time.