Rett Awareness month is October and Caroline’s Cause is going to do its part by posting once a day, every day, throughout the entire month.
The plan is to post short entries about one thing that Caroline does during the day. A sort of diary. I predict you’re going to be amazed before we’re half way through. Why? I was in Pennsylvania earlier this month and Tony and his family stopped over to my brother’s house, where I was staying. The entire family was there and we were all having a good time. At one point, I passed through the living room and everyone was silent, a pall pulled over the room.
“What happened,” I asked my mother.
“Caroline had a seizure,” she said.
I noticed that Caroline was stretched out on the floor and Tony and the nurse were tending to her. They were quiet, calm and deliberate. I see people working on Caroline so often when I enter a room, I have come to expect it. I hadn’t seen the seizure, which the only evident now by the tension in the room and the pensive look on my mother’s face. My sister sat on the couch, eyes closed. Praying, I assumed. Outside the nephews—boys and girls from 4 – 14 years old—were laughing and yelling, occasionally darting through the house in a game of army or it tag.
Tony looked up and said, “We’re going to cut out.”
A few minutes later we were all out by the van, loading up Caroline and talking about our plans for this blog and Rett awareness month. I am always amazed at how quickly and easily my brother’s family responds to crisis. They’ve had a lot of practice. This is why a nurse and so much equipment is always on hand. This is why I predict you’ll be amazed at some of what goes on around his house.
With a Rett child in the house, even the mundane is interesting, exciting. Heartbreaking.