Living with Cerebral Palsy 🍋🍋

Wednesday, 28 November 2018

One love

I've had a bit of a blogging hiatus lately. I've been chewing a few things over I suppose. Elin, you'll be pleased to know, is fine. Since my last post we've had a wonderful holiday in Anglesey and Elin's dystonia has, if anything, calmed down again. In reading over my last piece I realise again how everything can shift in an instant in our world, how mole hills can suddenly turn into mountains with the passing of a few days, or, perhaps more crucially , vice-versa. It is becoming a strangely common pattern for me that following a period of wallowing or self-pity (see aforementioned previous post) something will happen to make me realise how misguided my upset was. Not invalid, but misguided. Four days after I wrote that post bemoaning the fact that Elin was growing up, she lost another one of her friends. He was 15, a warrior and taken far too soon. His family are all warriors too and always have been. There is nothing on this planet that makes you freeze and take stock of your blessings like the loss of a child like Elin from a family like ours. It feels personal, it hurts beyond words, you feel desperate. The special needs family is a small one and in being so is close, supportive and endlessly understanding. We don't even need to communicate with words, often a hug says a thousand things, a smile betrays a thousand conversations never had. How can you look into the eyes of someone you see much less than your own family, yet recognise their soul?  
We are bonded together as parents of children with similar conditions, in dealing with the initial horror of a life changed and then gradually coming to terms with our 'new normals'. We have all been through the same patterns. The obliteration of any kind of post-natal joy, the constant stress from the word go, the fights for help, the hospital stays, the helplessly watching your child suffer, the worry, the equipment, the medication, the home adaptions you never believed you'd have to have, the blessing of every birthday, the sorrow of what could have been. We know one another because we are each other.  In the realms of our exclusive little world, in the family of parents we have become, bound by sorrow and despair and great joy that no ordinary parent could ever understand, we are all one person, one child, one family. So when one is lost, then we are all at sea.
Two weeks ago, amazing, fierce, beautiful, funny, strong, miracle-warrior Josh was lost. But never, ever forgotten. 
Two weeks ago my perspective was found. 
Goodbye Josh, thank you for all you taught us and will continue to teach us. Thank you for your smile, for your spirit, for your attitude to life, for your cheekiness, for your love. 
Nobody who met you will ever forget you, squashy. The impact you had on those around you was extraordinary, as the huge numbers of people queueing to say goodbye to you (and beautiful words written by family, friends and teachers) at your funeral paid testament to. You achieved in your short life much more than most people could ever dream of, just by being you. Love is your legacy. What an amazing legacy to leave behind. 
Rest in peace, little man.

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