Stuart Roberts - 25cps, page-12

From Trail to a Texas Trial

T-26?? (T stands for Target Day the World of Opportunity May Get Handed to Us) Musing 1
by melelllan on November 4, 2014

Since I don’t know what day this month the results of the NNZ trial are coming out, I have to do a vague count down and just to keep my sanity I am going to assume it’s the very last day of the month.

So, not dwelling on the past trial, I am going to look forward and hope.

Katelin and I are possibly facing a future completely different than I have envisioned for the last 19 years since she was diagnosed. On the one hand (the major dominate one) I can hope that she WILL have a longer life than I could have hoped for before. Against all odds, maybe just maybe she’ll be able to tell me “where it hurts” and a major complication can be averted. She may, with good fortune, tell me all the wonderful things she’s ever thought. She may be able to tell me what makes her sad, frightened, happy, what she wants to wear-all the mundane things people take for granted, that I never will, if she’s ever able to tell me.

But, on the other hand, I’m a bit scared. What if I’ve been feeding something she hates all these years. What if she doesn’t really like it when I snuggle with her, what if EVERYTHING changes??? There are quite a few things I like. I like playing games, and coloring and making her laugh with funny noises. I like snuggling with her at night and telling her The Three Little Pigs, using Fox as a stand-in Big Bad Wolf. We are in a comforting routine. I’m pretty confident in what she likes, how she likes things done, where she wants to go or not. But, facing a possible complete turning around of all that we know together is reallybedtime book scary.

I hope I do it right if that time comes. I hope that we have the chance to evolve into something more profound. But, I hope and hope that not EVERYTHING changes and she still wants to snuggle at night, but maybe, just maybe she’ll be the one telling the story



T-25 Musing 2
by melelllan on November 5, 2014

I wasn’t sure, when I sat down to type, what I’d be musing about today, but when I looked up at the title, I misread it as “Mustang”.

The wild Mustang, an American Icon. In 1971, the United States Congress recognized Mustangs as “living symbols of the historic and pioneer spirit of the West, which continue to contribute to the diversity of life forms within the Nation and enrich the lives of the American people.

I think hidden in all of us parents are wild mustangs, just waiting for our chance to break free of the corral that cages us all in. That’s how I feel, anyway. I feel like I’m jostling amongst a thousand, we’re pawing at the ground like horses that can feel the electricity in the air of an impending storm. There’s a wild look in our eye, I’m sure mine at least, as it gets closer and closer. I can almost feel my chest about to burst. I sense we are all leaning against the fence, the sheer force of thousands of souls yearning to run free with our babes beside us. Those small fillies and colts, a little confused about all the commotion, but standing beside us, trusting us.

This fence is coming down, I can feel it and I know I’m not alone. The whole Rett world is pushing against it. The parents, the researchers, the children. It’s going to crumble. I can hear the thunder rolling in. Can you hear in Rett syndrome?? That’s the thundering of thousands ready to stomp you out, to break your fence and run free.