the truth about Rett Syndrome & I

sleeping beauty

Every so often, I hear about someone with Rett Syndrome passing away and my heart breaks. In this past week, 4 little girls all under the age of 10 have passed away, and there is really no words to describe how that feels. Terrifying? Devastated? Angry?

This is the reality of Rett Syndrome and at almost 1 year after our diagnosis, it doesn’t get any easier. As a parent with a child that has Rett Syndrome, or any kind of life threatening disorder, you want to believe that it won’t come to that, an early death (ugh it took me 1 hour to write those words), but in most cases it’s just how it is.

So Rett Syndrome and I .. how would I describe it? For me, there’s like 2 parts to Rett Syndrome – the disorder itself, wild & unpredictable. You won’t be able to tell how it’ll present itself next week, let alone 5 years time.. You can get clinical and know the parts to it, but it’s never the same person to person.
The other part is how it makes me feel. It can make you crazy and it can make you inspired. It can make you appreciate what you have, and it can beat you down.

I know how I feel about Rett Syndrome is nothing in comparison to actually living with it, but I’d be lying if I didn’t say it doesn’t effect the whole family. I am always going to feel that chronic sadness, but I am always going to feel immense pride in my daughter. I never want the disorder to fully dictate how she lives her life, because we all deserve to LIVE and have no regrets. Rett Syndrome isn’t who these girls and boys are, these boys and girls are much more than that.

Rett Syndrome, to me, is just a part of the journey that some people get. And as real as the teeth grinding, breath holding, seizures, scoliosis, long QT, gross motor issues, and everything else is – love is just as real and as worthy of our attention too.

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c_for_courtApril 3rd, 2013 at 2:37 pm

All i can think of when reading this post {in between blinking desperately trying not to cry at my desk} is how absolutely and positively Jovie lucked out in the mum stakes…

To have a mum like you who will not allow a daughter like Jovie to be defined by a medical definition. That’s inspiring. And however long Jovie is with you, she will always have that. A mum who loves her. And i think that makes her very lucky.


**ps, the blinking didn’t work and i’m out of tissues! Nuts!