“Smile alert, smile alert, somebody’s hiding some giggles!” Chloe yells out across the room in the middle of the afternoon. It was the end of quiet time and Claire was just waking up from her nap. As soon as Claire had two eyes open Chloe was in her bed doing whatever “secret sister” silliness they do. An hour later I was cooking dinner while they watched tv when Chloe yelled out again, “seizure alert, seizure alert! mom!” I had already been running toward them. As I held Claire, Chloe gently reassured her that it was all going to be alright and that she would start breathing again.
There’s nothing about seizures that I like but what gets me the most is that our entire family is constantly on alert. We strive for balance and to not have life revolve around Claire but with the fear of impending “episodes” or seizures that is hard.
For us, right now, that’s the one thing I would fix. I can deal with the spoon feeding and the communication struggles. My back aches from the transfers and carrying but I have a great physical therapist that is keeping me together. The tension that comes from never knowing when it’s coming, that could break me. It already has in the sense that I am so sad for Chloe, who at the age of 5 has taken it on herself to constantly “alert” us to Claire’s state. There’s the smile alerts, giggle alerts, sad alerts and trouble maker alerts in addition to the breathing and seizure alerts.
It’s exhausting. I’m exhausted. We’re all exhausted. The thing is, it won’t always be like this, I have reason to hope for better. Last August when we went to Boston we were a different kind of tired. We were exhausted from having too much fun. For whatever reason, Claire had a really good few months and in that time our little family came down from high alert. Life was easier, we all laughed more and the focus wasn’t on Claire’s breathing.
It will always be a very special time for our family and I am hopeful that it was due to the shots. I hope that it was the drug in those little vials and that we can resume it soon after Claire completes the trial. I could really get used to not living on high alert.