Yesterday there was no blog post.
There was just a day where it all became too much.
Too much to think about, let alone to share.
Yesterday we made one of our frequent journeys to a hospital appointment almost 200 miles away. We were very fortunate to only be travelling this distance as the person we were seeing is based in Manchester but was in Bristol for a conference and had offered to meet us there. We are very fortunate to have some wonderfully kind medical specialists in this country.
The news was not what we had hoped for and our precious boy will require surgery to both feet if he is ever to have a chance to wear regular shoes or to be able to stand up or even just to use his standing frame which helps strengthen his bones. If you are not able to weight-bear your bones become weak. Adam already has osteoporosis and he is going to grow a lot over the next few years. It is vital that we keep him as physically healthy as we can. Without surgery his feet will continue to turn and he will never be able to do the things he wants to do. Then there is his emotional health. He will suffer hugely by enduring the surgery. He hates hospitals and it will be physically painful as well as emotionally stressful for him.
There are two things which Adam wants to do which he will never do without this surgery.
- He wants to be able to wear shoes
- He wants to be able to stand up to dance with his girlfriend
Hardly extravagant wishes.
We have tried so hard over the years to avoid major foot surgery. Adam has had months at a time of both feet in plaster casts and had three small procedures to each foot. Every couple years we have made weekly trips to Manchester for a period of months, a round trip over around 664 miles each time.
We are experts at bathing and showering with full leg casts, not an easy task with a child!
We have used braces and splints day and night. We have used stretches and exercises. We have taken him to different hospitals before finding Naomi Davis in Manchester. Even though I know this is in his best interests and that I have done all I could to prevent it, I still ache that I have let him down.
It is a reminder of so much that he has already endured.
After his last hip surgery he was a sad little boy for a long time.
After spinal surgery it took him a year to be able to roll over again and 17 months to be able to pull himself across the floor again.
We have to weigh up what he will gain against the pain and the lost months due to surgery and recovery.
If it was you, would something as simple as wearing shoes be enough? Are you wearing shoes right now? Did you wear them yesterday? What about in winter when it is cold? How about special occasions?
Adam is going to a wedding very soon. He has chosen a suit and a purple bow tie all by himself. He is so excited to dress up for his Auntie Samantha’s wedding. He wishes he could wear smart polished shoes with it instead of just his socks. We all want to look our best for special occasions. It is important to us.
How about dancing with someone you love?
Living the life you wish to live is important. Feeling happy with yourself is important.
Surgery will mean time in hospital, time in plaster casts, more trips to Bristol to get splints made and fitted, more time away from the life he wants to lead.
Which is why I have to try to make the world better for him, for today, tomorrow and every day in his future.
There are things he wants to do and places he wants to go to, yet we cannot always manage to. Usually it is because of a lack of accessible toilets with a hoist to get him out of his chair and a bench to lay down on to switch to the sling which enables him to sit on the toilet to manage those basic functions which we all need to do but don’t generally feel the need to discuss in public.
So, after a difficult day and a night where I couldn’t get to sleep, I was really touched to read that a friend had set up a petition to show Hall for Cornwall that making the theatre accessible to all people really matters.
It shouldn’t need a petition and it shouldn’t need for people to be prepared to take legal action. Being able to go to the toilet is something we all take for granted. The need to pee certainly shouldn’t stop a child from going out and living a full life.
My son already has enough limitations in his life.
This is why I am so determined to make the world accessible to him. Quite often, it is not his physical disabilities which stop him from living a full life, it is the physical world around him. A world which could be made more accessible for so many if only people wanted to help.
So I am listening to my son and finding out what he wants to do. I am contacting those places and asking how it can be made possible for him to “go” there. There are so many places he would like to visit, ordinary places, the sort of places other children his age like to visit.
I did my best for so long to keep lifting him. I try so hard to hide the reason why we can’t stay long when we go out. He is almost 10 years old. I cannot keep hiding under a blanket of reasons why we need to go home soon.
One thought torments more me more than any other and that is that one day I will not be here to make sure that he can live a full life. That very thought breaks my heart and opens the floodgates of my whole being. I can wallow in it or I can try to do something about it.
So I seem to have fallen into the role of being a campaigner, but really I am just a heartbroken and desperate mum.
Desperate to ensure that my son’s life is one which he will feel is worth living.
You can help. Please CLICK HERE to sign a petition to help make properly accessible toilet facilities, with a bench and hoist, a legal requirement for large businesses.