This past week I kept thinking, “I’m missing something. Is there something else we could be doing for her breathing? Or for her hands? Or for anything else?” To tell the truth I hadn’t been keeping up with where things were on the research front. Yes, I glance and read the updates from the Rett organizations, but I let the information wander in and then right out of my thoughts. It is for my own health. I needed to not dwell on Rett research and just be, just be present in my daily life. This past month, I had to really think about things for Magnolia that I didn’t really have to while living in Los Angeles. We have been getting settled into our new life in Connecticut. It’s different here. It’s definitely colder.
It seems to me Magnolia is having trouble walking in the morning. I brought this up to AJ and he said he hasn’t noticed it. Is it only with me? I was thinking it might be the colder weather, or maybe Rett Syndrome is progressing. I know AJ moves slower with Maggie than I do. I tend to move fast to get a lot done. He is more focused on the task at hand. Maybe that is why he hasn’t noticed it, or it hasn’t happened with him. It is happening though. She bends her legs, stumbles and needs my full assistance to get her walking across the room. After 10-15 minutes her body adjusts and she can walk and balance. I can only imagine how frustrating that is for her, how much she must hate Rett Syndrome.
It’s tricky when someone asks me how Magnolia is doing. Lately, I say great. Mainly because we lived for 4 years in a state of panic with uncontrollable seizures. But also, because her seizures are less now, she is a much healthier weight, she seems happy. But at the same time, she still struggles -her breathing is worse again and now this, the difficulty with walking in the morning. Unable to use her hands, her physical voice, breathe well…some days i wish she wasn’t smart enough to understand and that I could explain all that to people when they ask how she’s doing.
I’m not upset. I used to be. I’ve learned to protect my own mental health by not always focusing on Rett Syndrome, just on our lives. Problem is Rett is a part of our lives.
So here I am in a Rett research hope spiral wondering when the treatments or cure will come. I know it’s soon but it’ll never be soon enough. This week Acadia announced top line positive results on their Rett program. We are excited to see what that all means, while we wait for more comprehensive treatments that we hope are going to start rolling out with trials soon.
Here are a few links to articles and a webinar that i watched this week….