T-?Hours: Musing 2-The Stuff of Dreams

imageSo, the results didn’t come out today. Bummer, that. Well, then, it’s just another sleep and a wakeup give or take. So we all get to sleep on it.

I’m not worried about tomorrow; I’m certain that, no matter what it shows, there will be a Phase III, which will be longer and since it will contain both younger girls and women will be a good gauge of how it might be affecting them differently. Say for instance that the Pediatric trial doesn’t show a huge recovery of skills, well maybe that’s because they aren’t as far gone in the younger group as in the older group and they have less to recover. Or, maybe it’s because their brains are still developing around the age of 5/6, so there are other factors in play than in the older group which has reached a more “chronic” than “acute” level. That would be important to find out. Maybe they’ll learn that IGF1 is better for the girls up to a certain age and then Trofinetide should be brought in. Maybe it’s a slam dunk! Who knows. But, I’m not worried.

The brain is such a mystery; what we learn most about discoveries dealing with the brain is that there are more mysteries than we thought. And one of those mysteries, to me is a dream. I’ve heard the dream you think is hours and hours long is a mere few seconds, a blink of the eye. That seems crazy to me. But, if you had told me twenty years ago that one day someone named Margret Brimble would figure out how to repair/partially repair the Rett brain, I would’ve said that’s crazy, too.

That is just the sort of crazy dreams of all sorts are made of, though. Did I really believe I would be a published author? Hell, no. Just a crazy dream. Did I believe all those years ago, that I could be a single parent and do it well enough that my other two are on their own, supporting themselves AND they still talk to me? Hell, no. I hoped, but I was far from sure. And did I have the audacity to dream, those twenty years ago, that my girl would regain her hand use to a good extent, that I would hear the word “mommy” every day after the age of 7, that I could give my Katie a full life with friends, surrounded by family and adventures to remember?…I did. I had that audacity. The biggest dream of all and I believed it. That’s crazy, huh. And yet, here we are.

Now, I have the audacity to actually BELIEVE that Rett syndrome is going to be, in the life of all our girls and boys,  soon like how they say dreams are…seemingly an eternity yet just a mere bit of time and then it will be gone.

That will be the Stuff of Dreams tonight.

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This entry was posted in boys with Rett syndrome, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide Pediatric trial, Uncategorized and tagged , , , , , . Bookmark the permalink.

One Response to T-?Hours: Musing 2-The Stuff of Dreams

  1. Rose and Renée says:

    Both our past, present and future dreams are so alike.
    Your blog always gives me something to ponder. Such as, a typical dream while sleeping can seem like it takes place over days, yet it only lasts mere seconds. Yet, a planned dream can take days. I guess it’s true…all the good things are worth waiting for.

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