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.

Colleen English

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…

View original post 97 more words

This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s