Tonight Chloe and I went to Whole Foods for a few things. Being the Chloe that she is, she hopped through the entire store instead of walking. Some people laughed as she fell over again and again. Some people were obviously annoyed with my lack of parenting. I really don’t think those people understand just how much I enjoy that she can hop around like that. Perhaps they don’t know that there are people out there who have to fight for each step that they take. If you have Rett Syndrome and you don’t walk, that becomes your life’s work, and a hell of a lot of it. Claire was referred for physical therapy at 15 months. She hadn’t pulled to stand or taken steps so early intervention was deployed. We worked three days a week for just over a year and a half with a lovely pt named Tiffany. When we began I had no idea what Rett Syndrome was. We had no diagnosis so I was just on a mission to better understand Claire and help her to thrive. Early on Tiffany explained to me that a lot of what she did was just waiting on Claire. She would stand and wait minutes for Claire to take the next step on her own. Over and over as we worked Tiffany would tell Claire that she could do it and show me how to wait for it. It was true, if her helper would slow down enough, Claire was able to take her steps on her own. As it turns out, a major component of Rett Syndrome is Apraxia (more on that soon!) and because of this, children with rett require lots of time to respond. To combat this we worked on motor planning which is just doing the same thing over and over and over so that it becomes automatic, much like I am typing right now. As I think back I am in awe of just how much Claire worked at it. Sure she had her days, but she kept trying. Even as her hands stopped working and she could no longer hold onto her walker, she kept trying. As Claire got older we had to move our pt sessions out of our home and that is when we met Sue. It has now been 4 years since we have been seeing Sue. Claire has been averaging 3 hours of pt a week for all but the first 15 months of her lifetime. The great part about this story is that with all of this work, Claire is making progress, it is very slow, but it is progress and it is important. Claire has yet to stand by herself for more than a few seconds or to take a step by herself, but she is getting there. Each day as she fights for it she teaches me what patience and perseverance is. Claire now works on the treadmill and is getting faster and stronger over the weeks and months that we have been at it.
These years of work are what enable her to do the walking that she does around the house as well as out and about. This week she was able to stand strong with her feet in the sand while the waves came up to her knees. She was able to walk into a friends house and look at the bunny in his cage. We don’t yet have a cure for Rett Syndrome but with physical therapy Claire is working to overcome some of the challenges that it brings with it.