The day the world began to shrink.

Three years ago today is when my son’s world started to shrink.

It is also the day that Bristol Children’s Hospital saved his life.

His spine was badly curved and crushing his internal organs. His ribcage on his left side was tucked inside his hip bone and he was struggling to eat or drink. Without the operation to insert spinal rods he probably only had one more year of life and it would have been a horrible way to die, crushed from the inside.

Adam has always been disabled.
He has always been a full time wheelchair user.
He has always needed assistance.
But he always had a great life.

Saving his life and improving his health should only have increased that greatness?

Why would it shrink?

My little 8 year old boy had weighed only 14 kilos. We had hoists at home but I could still carry him everywhere. He rode his bike, he went to the skate park, we went to the zoo, had days out with friends and did whatever we wanted to do. We had created a mobile bathroom in our car with a fold out bed and a commode toilet chair. It needed two of us to lift him and move equipment – wheelchair, bed, toilet, child and two adults in the back of a car, even a big one, is not easy. We did our best to cover the windows and to park in a sheltered spot but it lacked dignity and I am actually filled with shame that I ever sat my 8 year old son on the toilet in the back of our car. But it enabled us to go out and enjoy life.

After the spinal surgery, my little 8 year old boy could not be lifted. It hurt him. He needed much more support across his body as, despite being propped up internally by metal rods,  he lacked the muscle to support this new, taller, straighter body.

Eight days after surgery, smiling again.
8 days after surgery, smiling, pleased to be dressed and in a chair again.

It took many months to recover, and for the first couple of months he suffered so much that I regretted having put him through the surgery. He suffered to a point where I regretted putting him through it almost every second of every day. But eventually things improved. He slowly started to eat and digest food better. And then he began to enjoy food, which was amazing to see.

Within two years he had doubled his weight. In the three years since that surgery he has gone from wearing clothes intended for a 5 year old, to clothes intended for 12-13 year olds. He is now eleven years old and a healthy boy.

He is suddenly almost as tall as me.

But whilst he has grown bigger, I have just grown older. My back problems have worsened and I can no longer lift him for a cuddle, let alone anything else.

At home we manage quite nicely, but a child of 11 needs so much more. He needs to go swimming, out for milkshake, visits to the seaside, days at local attractions, shopping and lunch out with friends, trips to the cinema with drinks and popcorn. Every child deserves to have a full and fun childhood.

But he can’t – and all because of a lack of usable toilets for disabled people who cannot self transfer.

And this is why I can’t stop thinking about Changing Places toilets, talking about a lack of them and pleading with businesses and councils to become inclusive.

I put my son through so much so that he would live, now I have to make sure that he is living life to the fullest, and a lack of access to toilets should not stand in the way of living a great life.

Post-surgery cuddle with Mummy
Sitting on Mummy’s lap a week after surgery. Mummy’s joy is clearly visible.

So please spread the message about the importance of Changing Places toilets. It might not seem like a big deal, but you might just be helping a child like Adam live a better life.

Thank you.x

 

30 thoughts on “The day the world began to shrink.

  1. We are living with a ticking time bomb to when our life with shrink.
    We know it is coming, but there is nothing we can do to prepare for it.
    All I can do is keep working hard for change and keep hoping that any moment now it will come.

    Liked by 1 person

    1. Last year, my son was 10. I decided then that, in ten years time I did not want to know that another mum and her 10 year old were living with the same struggles as us. I have nine years left to make sure that the future changes for babies born today.

      Liked by 1 person

  2. I remember that day three years ago very well. It was a decision that was taken out of your hands and for the purpose of him to live, what saddens me is that you now have to fight for a life worth living. Most people including myself don’t have a clue how hard things have been for you all, so much pain for such a wonderful family who deserve so much more. It angers me that you have to spend energy on this when what you are asking for should already exist and if it didn’t, should be done, you are not asking for the world, just a fairness that others already have the luxury of having. My support will always be there for this x

    Liked by 2 people

    1. Thank you. Your support has always made a huge difference to me and to my family.

      I don’t share most of the difficulties we face nor the most harrowing memories. They are hard enough for me to live with, others don’t need to know them.x

      Thank you though, for always being a great friend.x

      Like

    1. It is awful when you know what is coming. I truly had no idea before Adam’s surgery. I think I just assumed I would always be strong and healthy and that I would always be able to meet all his needs. It breaks my heart to have to answer his question of “do they have a toilet I can use?” with a negative response. Children should not have these worries and I don’t want our children to face them for their entire adult lives. We will bring change.

      Liked by 1 person

    1. Thank you so much. I really do appreciate it and I tell Adam about all the people who are helping. He loves to know that people care and want the world to be a better place for him.

      Liked by 2 people

  3. I have a friend with a daughter who is disabled, and I’m forever amazed at all of the little things I take for granted. Things like not having to worry if the sidewalk is too bumpy for a wheelchair, or being able to use the toilet. Thank-you so much for your efforts to raise awareness. x

    Liked by 1 person

  4. The photo of the two of you at the bottom has brought a smile and a tear, Adam is a lovely boy. It does sound like things are far toughter than they need to be. I remember reading something on your blog a few months ago about trips to the beach and a similar problem. I will share your post, such an important thing to raise awareness for.

    Liked by 1 person

  5. I can totally understand. My uncle has needed a wheelchair since he was 8 and not only is finding a parking space awful sometimes he doesn’t want to go out too long because he worries about finding a disabled toilet which I think is just wrong.

    Liked by 1 person

    1. It really is limiting life for too many people. Yet not many will talk about it, because it is embarrassing, but then nothing changes.

      Like

  6. It saddens me that you and Adam have such a battle for such basic amenities. Every child (and adult) should be able to live their lives to the fullest and not worry about toilet facilities. I’ve followed your campaign for a long time now and really hope you get somewhere with it soon and no other families have to go through this. Love to you both xx

    Liked by 1 person

  7. I am so shocked when I read comments from people who think that severely disabled children and adults should just stay at home when there are no changing places – though I must admit, I would like one of those custom made vans with a toilet in it, so that my daughter and I could travel wherever we want x

    Liked by 1 person

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