I wanted to talk about heroes this week, the biggest of heroes, I wanted to talk about brothers and sisters. I’m lucky enough to have both, and I can’t even fathom of my life without them. No matter what happens, they’ve got my back, my best friends and my biggest supporters. When I’m hurting, they’re the people I can fall back, when I’m happy, they’re people I want to tell.
But it’s not my brothers & sister I want to talk about, it’s the brothers and sisters affected by Rett syndrome
I don’t like the word sibling, it just doesn’t feel right to describe the wonderful connection you have with the people you grow up with, the deep love, but I guess I’m going to have to use it.
I’ve had the wonderful opportunity to meet so many siblings, and they have been wonderful, they’ve always been so kind, caring and protective of their sisters. When I started collecting these moments for the Awareness Albums I’ve been making, I always knew there would be photo’s that capture those little moments of love between siblings, I didn’t quite realise how often that would be.
It’s quite obvious to me the comfort, consolation and friendship they bring, the joy, the happiness and all the other wonderful emotions you see so vividly captured in the girls faces. Growing up with Rett syndrome seems to give them an uncanny ability to communicate more intensely with their sister.
That’s not all though, these siblings seem to be so much more rounded as children, it took me a long time to grow out of being selfish and self focussed, I think it’s a natural thing as a child. I watch as Emily hardly big enough to hold the remote, will change the TV channel to Handy Manny for Carys, or call her Mom if she thinks something is wrong.
I watch as Lucy constantly checks on Sophie and makes sure everything is okay. Sitting on a couch holding hands while they watch TV.
I watch Shannon with Cassie, and Millie with Lucie. I watch all these wonderful children just be amazing individuals. I watch as they fall asleep hugging, holding and dreaming with each other.
I speak to parents, I hear their concerns as they worry about the impact that Rett syndrome has on their other children. The demands of Rett syndrome means that holidays are tough, going anywhere is tough, doing anything is tough. They are concerned that it always about Rett syndrome and sometimes not about the family.
There are so many dilemmas that face a special needs parent, not just the cause, but the fight to make sure you pay all your children the same attention, the right attention. That you always encourage and push each child to achieve what they are capable of, that they understand how much you love them, that they know they are still the centre of your universe.
The fact that when they go into the world, for school, for activities, they go with a greater experience and maturity of the life, and especially the fact that even though we may not all be the same, but that we are all beautiful. That’s what makes them beautiful, that’s what makes them special.
From my experience, you’re doing a pretty good job, I see children that are growing into great examples of humanity.
She aint heavy.
Here is the Awareness album for this post, please take a look at all the wonderful moments that people have sent us for siblings.
Just like the last Awareness Album here, please send me pictures of those moments you capture with your girls and their brothers and sisters.