This is how my day started. Claire woke up ‘not really in her body’ all the while pretty happy. She enjoyed her bath, although she was too floppy to sit up, she very much enjoyed getting to lay in the bubbles and get a full body rub down with her favorite salt scrub. We attempted to start breakfast when the twitching started. Captain Awesome started to record it so that we could send it off to the docs for professional opinion. As he recorded it got worse, this is just a little clip of what went on for a few minutes. To be honest it is a very difficult way to start the day. Eventually she improved and with deep pressure to her shoulders to help keep her neck up, she was able to eat her breakfast. I am pretty convinced that it is indeed dystonia and not seizures. That being the case, it seemed that the episode had passed so we put her on the bus and off she went to school, still unable to hold her head up, able to smile none the less. At this point I would have really loved to have taken some pill to make the pain go away, crawled back into bed and pulled the covers over my head for the next couple of days. With Chloe literally running circles around me, that proved to be a challenge and it is Thursday, so we had to get to music class. Once that was done with, I went with my next best option, coffee. I know that it is silly that I depend so much on our coffee shop. It is so much more than caffeine for me. Yes, they do serve unbelievably good coffee and I have been so spoiled by it that I generally opt to not drink coffee anywhere else. As cliche as it sounds it is the smiling faces, all of the yuppies with there macbooks, the students reading really big books about super important things, the place just has a vibe about it that melts away worry and stress. Like most other days, as I was up at the counter ordering, one of the staff asked how I was doing. I was able to smile and respond with a “pretty good” that was surprisingly authentic. In that moment I almost felt like I had betrayed myself. How could I be pretty good? Claire couldn’t hold her head up to eat breakfast, she stopped breathing twice that morning, that doesn’t fall under the column of pretty good, that doesn’t even fall into the alright category. I am pretty sure that any time breathing all together stops for any period of time it goes straight into the sucks column. Quickly I snapped back into the moment as Chloe went on to greet each of the staff by name, yes, I drink a lot of coffee. Then we walked. As we walked I heard the birds chirping, the air was full of that fresh salty smell and my toddler was in the stroller singing. Moments like that I just can’t help but try to count all of my blessings only to find that I can’t count that high. We continued down to the beach, but it was high tide, so we sat on the stairs and watched the waves. They are mesmerizing. I could never tire of watching the kelp curl in the wave and the sound of the little bubbles as it washes back out into the ocean. Such a strange life, to have such highs and lows so close together. Today I learned that I have indeed grown as I have been weathering the storms. Finally, it is starting to feel like perhaps rett syndrome/scoliosis/dystonia is just a part of my life, my very wonderful life.
Warning, do not click to play this video unless you are in a place where you can cry or get pretty emotional, it might be very, very hard to watch.