For the longest time the letter s was important. It was how she said yes with a long extended “s”. It was how she hissed like a snake. It was how she responded to Brown Bear Brown Bear what do you…? “ssssss”. It was the one sound she’s been able to call upon consistently since she started talking and then lost her words.
Today I realized that that too is all but gone. Maybe she was just having an off day, but it’s been harder and harder for her to make the sound for a few months now. Today, she just stared at me when I asked with her eyes welling up with struggle. She mustered an “f”, and I told her good job, before I had to leave, lest my eyes well up too. She used to count with me and do the ABCs. Now, she’s left with “f”s and “p”s.
Though recently our speech therapist started using a technique called Prompt and at the same time we started on yet another supplement – Coq10 and all of a sudden Maggie’s been making all kinds of noises. There’s a longer list of supplements and therapeutic interventions we’re yet to try, but if this is the result, we’re going to try them all. Eventually there will be a treatment. And when there is, she’ll be able to say “s” again.
I don’t expect her to use her words until we can find a treatment or a cure. But it was always nice to hear them, even if they were really just letters. Now I’m content just to be able to hear her voice.
I produced a movie that comes out today. It’s called Bad Night.
I guess, if I had thought about it at the time, I’d realize the title has some relation to Rett Syndrome and all the bad nights Rett has caused us. But, in this case, the two things really are almost completely unrelated. It’s just a silly movie. Regardless, in the special thanks I added RettSyndrome.org and Rett Syndrome Research Trust.
I got some resistance from the studio. When they asked me why they were included, I said “because if those two organizations weren’t doing what they’re doing, then I wouldn’t be able to do the things that I’m doing.”
They understood and approved the credit, which is amazing in its own right. I know no one really reads the credits, but the sentiment is true. I wouldn’t be able to do the things I’m doing, be it from a creative and career standpoint, or a fundraising and awareness perspective. I wouldn’t be able to do any of it if other parents weren’t leading those organizations so adeptly. And I wouldn’t be able to do it without all of you – which is why Team Magnolia got a special thanks too.
It means so much to have people who care enough to read these blogs, to follow along with our story and to lend a hand in whatever way they can. Thank you Team Magnolia, you are Magnolia’s Hope.
I wish she had idle hands. She doesn’t She has hands that won’t stop moving. At times, like now, they won’t stop moving extremely violently. Right now she can’t control them at all. I watch as she stares at them moving, and I wonder if she’s wondering how to stop them. I wonder if she knows that’s exactly what I’m wondering. She punches her own chin. Full force punches. Why would someone do that? Why would someone do that and have no real reaction to it? It doesn’t scare her. It doesn’t hurt her. She just does it again.
Soon, much like all of the symptoms we’ve seen pop up, I’m sure this one will lessen. At least, I’m hopeful it does and soon. But in the meanwhile we’re trying everything – we try disciplining her, we try ignoring it, we try bracing, we’re looking into supplements. Unfortunately when it gets this bad, nothing seems to help. Right now she’s not even holding stuff as well as she was – but we just have to double down, work harder, force her not to give up. Especially when a treatment is so close.
Between this and her being non-verbal, I’m not sure which is worse, but I definitely want them both to go away.
A few weeks ago I went to a golf tournament in Northern California for Rett Syndrome and I made a video about it. It’s a great event, very well run, and I think as a result, I’m going to get into golf tournaments. Not because I’m good, but because it’s fun, I’m raising money, and if Jenny is going to do all of the Rett Syndrome runs, I should pick a different athletic endeavor for Rett Syndrome. Right now it’s a choice between triathlons and golf. I’ll keep you updated on which I decide.