I know, here I am using words again…it does sort of make the point at just how useful they can be. I had an experience that was just too good to keep to myself, so here here is my story.
Funny how often, the best things happen when you aren’t looking for or expecting anything. This is at least my recent experience. Friday was a tough day. Claire had a seizure after starting the meds which was for sure not what I expected, her spells of dystonia had gotten worse and the pulmonary specialist that we waited almost two hours to see told us that he couldn’t help until he saw Claire sick and that there was no prevention at this point (not at all what I was hoping for!) We rolled with it all pretty well, kept looking for the bright spots and made the most of it. Saturday morning we opted for coffee out. Since it is summer there were a ton of people inside so we did the super cool local thing that none of the tourist knew about and went to the little cash bar in the alley way. Jared and Claire waited for our coffee and talked with the guy (turns out his name is Randy) who was waiting for his while I chased around after Chloe. Randy told Jared how much he loved Claire’s beautiful smile and said that she should come down to his shop for some stickers some time and then went on his way. We got our coffee, took a nice walk and talked about how nice it was to chat with a stranger who was so friendly (honestly it happens often and I never tire of it). We had a nice low key weekend full of lots of down time and playing with the girls. Monday morning came and Jared didn’t have to go to work (imagine the sound of angels singing) so we again had a lazy morning and found ourselves down at Verve getting coffee. It was pretty cold and wet (please don’t hate me if you are somewhere where it is hot, I am honestly not trying to brag) and we weren’t sure that was the best weather for a long walk, so we decided to take a short stroll up to the surf/skate shop that Randy works at to take up his offer for stickers. What happened for the next hour was unreal. He sat in the doorway (for the best light) and carefully worked with Claire to figure out the coolest way to trick out her wheels. Side note: Randy never asked what Claire’s condition or disability was, the word rett never came up. Often when people are around Claire they talk to her but don’t listen for her response or they talk about her as if she isn’t listening, back to my story now. He talked with her as he tried to figure out what would work best, there was never a point where I had to translate, he talked with Claire and responded. The three of us made small talk as Randy carefully put the stickers on her wheel covers and Jared and Chloe discovered foosball and a table top skate park for finger skateboards. Claire sat there beaming as Randy’s excitement grew with each sticker that he placed. I struggled to try to keep my composure. Part of me hated that I got so excited that somebody was treating Claire like such a normal kid, shouldn’t that just be expected? Part of me was mad at myself for not doing it more often. But the rest of me was just overwhelmed with joy that it did happen, it was truly beautiful and a moment that I really absorbed and treasured. As I publish this, it is a week later and it has been such an encouragement to have those stickers on the chair. Everywhere Claire goes, people have commented on how cool her stickers are and have identified her as a local. Every time that something was said, she just beamed that warm, glorious, bright smile that transcends words and it has been good.