This blog was inspired by some photos that Crystal shared with me, of her daughter holding hands with the people that truly matter in her life.
The thing about the journey with Rett syndrome is, is it not something you should ever have to do alone. The family is there to support your child and your friends and family are there to support you.
I’ve spoken about friends before, there are some amazing people that will surround you with support and lift you, carry you from those horrible places. The friends that arrive at hospital with a cooked meal, that child mind while you nip to the shops, the friends that run marathons, overcome obstacles and even climb Everest for you.
Through it all those are the people that pull you through, the people that are there to hold your hand.
It’s not just your hand they hold, it’s hers. Making sure that people are there to hold her hand too, the people that give her the love, the care, the attention and the affection, that help her deal with all her obstacles (and there are so many).
Hands, they’ve come to represent Rett syndrome, because it steals any purposeful hand movement, and very often replaces it with, wringing, washing, rubbing. Sometimes we hold her hand to give respite from this, sometimes we just hold her hand because we are trying to to comfort her.
The outlook for Rett syndrome is very positive, we beat it a fraction day by day as we fight to find that leap that will fix it, but that doesn’t allow us to forget about the now. That now can be very hard, you can spend weeks and in some cases months in Hospital, when you life goes into a holding pattern. Minutes, hours, days blur into weeks, it seems like it’s forever just sitting, holding her hand. Not just in hospital, but at home too, holding her hand, kissing her hand, sending all your love through that physical connection.
The comfort that comes with holding someones hand, is not just comforting for them, but comforting for you. We don’t just hold anybody’s hand, we hold the hands of the people we love and trust the most in the world, the people that are a part of our lives. Holding hands is a physical expression of love and comfort, so when someone takes your hand, it’s a precious gift of opening themselves up to.
That’s why we spend so much time holding hands.
And that is why this album is so precious, as this steady steam of support passes through Gabby’s life, they show her love and she reciprocates. They let her know they are there for her, to love and support her, they let Crystal know they are there for her too. They do it by sharing the intimacy of holding hands.
We are stronger when we are supported, we are stronger together.
The Album can be seen here : Hands Album