We 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.