Off Guard

It caught me off guard. I had been so wrapped up in keeping Claire alive that I had completely forgotten about the trial. Friday we raced around to unexpected heart checks and to the pediatrician for the ear infection that was driving the seizures and vomiting. Saturday night I was just glad that Claire could hold finally hold her head up on her own even though we still had to give her liquids with a syringe. Monday I was glad when she could take a few steps before collapsing in exhaustion. Tuesday I was deeply relieved to have that small spark back in her eye and that gentle smile that hides most of the time. With those two things I was content.

Further proof that Claire is ready to be done with Rett, she smiles for her shots.
Further proof that Claire is ready to be done with Rett, she smiles for her shots.

You can imagine how I was caught off guard. Claire’s blood sugar was a few points above the number that we call 911 at. I fed her gummy bears and waited to check again. I played it cool for the sake of the girls. A friend came over to talk to Chloe while we hung out in the car. That is when it happened. Claire looked left when this friend asked her about Boston. Looking at people when they say hi is a challenge on a good day, turning left to do this is a huge feat. I stood there watching, my brain watching the clock as I needed to recheck her blood sugar and my heart pounding as I couldn’t believe my eyes. She was free in that moment, to turn her head, to smile, to express herself right away while the other person was still listening, it was surreal, pure, unexpected joy.

I had prepared to get the placebo first. I had prepared for the drug to make little to no difference. I had not prepared to see Claire a little freer. I don’t know if we are on the drug or the placebo. I don’t know if the moment of freedom was the result of the antibiotics or the 24 hours of sleep that she got over the weekend. Maybe she just got a good nights sleep. It doesn’t really matter. Yesterday Claire was free to express herself a little more than she normally can and somehow I was coherent enough to notice. It was the reminder I needed. The reminder of the high value of the small things. Sometimes it is learning in school, playing with friends, putting in hours of therapy or injections of a mystery substance. We are doing this because a little difference can change the world.

2 thoughts on “Off Guard

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