Day 40 Making new friends

Day 40

Today, Katelin and I were invited to spend the afternoon with another Rett family in Houston. Kenna and Michael were so kind to pick us up and drive  us back even though it was an hour each way. We got to meet Rachael, who has such a beautiful smile and the sweetest giggle, and because I’m an idiot I have no pictures (duh). But Katelin and Rachael got along, laughing at funny things and watching the Wiggles and Elmo. The pizza was good, but the chocolate pudding was a big hit. I enjoyed the pizza, but really Katelin was all about the pudding, lol.

It was so good to be around people where drooling and diapers and dropped food were taken in stride. It’s not every place I can go and say “where do I throw the diaper?” And, I know the reverse is true, that it is nice when people come to your home who don’t mind drool, diapers and dropped food.

I have met Rett families before, at Strollathons etc., but I have not spent any prolonged time with any other family, their child and my child together, except here in Texas. It has been so relaxing, I don’t worry if Katelin spills something or I have to feed her, or finger feed her, or change her, and I can talk about (shhhh) pooping and we’re all on the same page. Our not so normal life has become normal in their company. I kinda want to dance to the tune of “we’re normal, we’re normal”.

I think parents of non-disabled children cannot comprehend the significance of feeling your life is normal, if only for a short time, after years of people looking at you with sympathy or worse, pity, or turning their heads or shushing their children’s innocent questions and looks. Even I had no idea how wonderful normal could feel, even though it’s not most people’s normal, here and with the other Rett families it is. I feel the weight of “different, harder, are people judging me?, lift right off my shoulders.

And I am reminded, as I meet and get to know these families and daughters, how important trials like this are, how we are all so grasping at a tiny tendril of hope that one day our girls will live a better quality of Life.  As this year comes to a close, I just know exciting things in Rett research are going to happen next year. The NNZ trial will move on to the higher dose phase, and with a bit of luck the FDA will approve the efficacy phase and Katelin will receive the dose approved by the FDA. I feel a tremendous relief believing that. All the struggles we have faced over the years, the many times I’ve been hit and scratched, moving cross country, challenges with school systems, tiring battles over IEP’s, fighting everyday for some small gain, waiting and waiting for “something”, have brought us here…to the verge of “something” and I am entering this coming New Year with a sense of excitement.

Come on 2014! Bring it on! We can’t wait! 🙂

This entry was posted in Rett Syndrome, Trail to a Texas Trial, Uncategorized. Bookmark the permalink.

One Response to Day 40 Making new friends

  1. Rose & Renee says:


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