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.
xxx

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4 comments

  1. I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

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  2. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

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  3. I recently have some difficult conversations and I did what a lot of people do when they want to know how to do something. I googled it. I came across Dr Williams herbal medicine on blog-site so many people suffering from different kind of disease including dystonia thanking him about his good work. I also have dystonia. I wasn’t running all over God’s creation with every man I could find but here I am. I have felt bad about myself for so many years now because of my dystonia status. I obviously still have some self-accepting to do but I want to thank Dr Williams for everything he have done for me,after taking Dr Williams medicine i was completely free from cervical dystonia within one month of usage, I think what you are doing is so admirable. you have helped me a lot! I want to definitely reach out to you and thank you for your amazing work. You are a good person, and an extremely talented man. You have helped millions with your herbs, and have really inspired me,and i pray you still continue doing the good work.you can also email him on drwilliams098675@gmail.com for help

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  4. Dr williams is fraud he took from me
    £260/- for tinitus medicines but never send me medicines
    I send him money through money gram and he received money in UAE I have documentry evidences
    I am in london uk my email (husein005@hotmail.com)
    I am tinitus sufferer pls pls for God sake be carefull this address (drwilliams098675@gmail.com)is FRAUD on some pages
    I seen he comes with 098765,ALL ABOVE IF YOU OBSERVE THOROUGHLY SAME NAMES ON DIFFERENT WEB PAGES RECOMENDING DRWILLIAMS098675@GMAIL.COM
    ON DIFFERENT DISEASES THIS ALL SCAM

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