I’m not typically a person who loves Monday, but I’m willing to make an exception for this week. As circumstances would have it, Claire’s horseback riding got canceled because it was over 100 degrees for most of the day. It is never hot here, not for more than an hour, but it was today. Since we don’t have air conditioning in our home, I had to
get creative be adventurous. Routine is the foundation that Claire’s regulation is built on, in a way, it compensates for the communication gap. So the thought of doing something unexpected scared me, a lot. Since crazy is as crazy does, we went for it. I called a friend and asked if she and her kids were going to the beach after school. She knew that I had a lot on the line and we discussed the chance that I would have to leave with Claire and if that happened she would just take over with Chloe. Last time that we went to a beach Claire had crazy seizures from the excitement and I braced for this, figuring that if she didn’t have seizure it might just be fun and it was. Our time at the beach felt like a brief vacation from life with Rett. Other than having to carry her through the sand there wasn’t much else that Claire needed from me. She was able to relax and enjoy the sights and sounds all on her own. She laughed as we let the waves run up her legs before I swung her in the air as we ran to the safety of the dryer sand. The rest of the story is better told in pictures, it was great.
One thing that I have learned along this road is that you really have to enjoy the moments that you can. I am so glad that we took the risk, these are memories that no amount of seizures or dystonia can take away from me.