Too much fun

It was one of those weekends that I couldn't help but pinch myself, over and over and over. While it was a bummer that surfing got canceled we rolled with it and Claire went on a great bike ride with her dad. Honestly, I think that she had more fun doing that anyway. The girl cannot get enough wind in her face and time with her dad so this works well. Later that day Captain Awesome took both girls to the park so I could rest. For the first time ever the girls played on the play structure together, it just doesn't get better than that.

Sunday continued with even more goodness. We drove up to Pacifica to meet up with some friends to enjoy some supremely lovely weather along with a nice meal and lots of happy kids. It was a bit of a long drive but this is what I had to look at, while the girls were in the back seat holding hands and laughing.

 
Like I said, kept pinching myself. It felt like we were thriving within the limits of rett syndrome. No we weren't on summer vacation like I wish we were but we were all very content to have fun without having to go anywhere. Claire had her little dystonic episodes and recovered quickly each time, it wasn't a deal breaker at any point. After a warm lazy afternoon around the house enjoying root bear floats and bubble baths the weekend was over. Jared and I could sit back with our feet up and smile, knowing that we had a great, fairly normal weekend full of summer fun, it was great! I really thought that it was a good balance of fun and rest. I was looking forward to Monday morning. Sending Jared to work and Chloe to school so that Claire and I could sit and enjoy the beach all by ourselves. I think Claire wanted to as well but that didn't happen. I'm not sure what did. Maybe it was the excitement, the promise of great fun was too much for her. Maybe it she just has rett syndrome and seizures are just part of the game. Either way, this morning as we were saying goodbye to a friend at the coffee shop, it came. it started out as dystonia but then it spiraled into a real seizure. The kind that she turns ashen color because she isn't breathing as her whole body convulses. I was afraid to drive with her in the car for fear it would happen again. So we drove just less than a block and parked by the beach that we were planning to go to.

 

She rested for nearly an hour before she woke up. She seemed like she was ready to rejoin the world so we went and sat on the beach. No standing or pt work like we normally do. She didn't attempt any walking or stairs. But the sun and the breeze seemed to revive her a little and it helped my spirit a lot.

Even after a little beach time and waves to calm me, I am so mad. I hate that she has to spend her summer being protected from too much fun because her brain can't take it. A very big part of me thinks that I should be thankful for the weekend and just chalk today up to life with rett but I don't want to. It sucks. After lunch she had another little one and as I type this she is sleeping it off in her bed. I can see her sister on the monitor cuddling up to her singing her the song that I sing when she is sad or having an episode.

My Claire Bear lives over the ocean, my Claire Bear lives over the sea, my Claire Bear lives over the ocean, so bring back my Claire Bear to me

It is so hard to get the courage up to try to do normal life when you never know when this crap is going to send it all sideways. Have I mentioned that I am tired? I am. I am tired of trying and hoping that it goes well. Holding my breath, hoping that she continues to breathe. It takes so much energy to be brave, to go out, to try to do things. When it works it is so great. It feels as though I am standing on the top of the mountain. Nobody gets to the top of the mountain without a few blisters I guess.