This quote, really sums up the way I have been feeling lately.
There is so much in this world I wish I had more control over, I wish I could make the world a better place for him. I wish he could access everywhere a child who walks can access. Just because he has wheels instead of being able to walk, in my mind shouldn't come into it. I wish I could make places more accessible. I wish he were able to wheel out of his own front door, or play in his back garden with more independence. I wish he could get down into his play room, when ever he chooses. Why shouldn't he? Most of all I wish there were more people in this world, who simply 'get' our frustrations. Who reach out a hand to help, an ear to listen and a heart to understand. Anyone can judge another, but until you've walked along side them and seen the struggles you really don't have any idea what that person faces every single day.
These frustrations of mine, have always been there but the older Noah is getting the more problematic they seem to become. Something as simple as a trip to the park, is anything but. Yesterday for the first time, I saw Noah react to not being able to do something he wanted to. He wanted to follow his three year old friend Kobe up the steps and along the bridge of a climbing frame, his face when he whizzed over, only to hear that familiar sound of Wizzy go 'bump' against the bottom of the step made me realise he is starting to feel it too. He was soon back to having fun whizzing after him around the swings, hiding in the trees and chasing the dogs. But I didn't forget that face. How I wish I could make every park in the world an accessible place for every child and their chairs so they too can be included in the fun. We are so so thankful for Wizzy though, without her his world would be so much smaller.
We are struggling to establish a ramp that will work for the entrance to our house. The landlady doesn't want anything permanent, which we can appreciate. But after waiting over 15 months someone came last week to fit a temporary one that would be able to be removed if and when we left, only for them to discover it wasn't possible, was disappointing to say the least. I know Noah would love to be able to whiz out the door to go for a walk, or even just to scoot out to wave goodbye to a friend or family member when they leave, just like any other child. A ramp to the toy room in our house isn't possible either, and the back garden isn't wheelchair friendly at all.
Sometimes I wish there was some way to make things just a bit simpler for this little star. You wont ever see him complain though, and as parents we always find a way to help him achieve anything he desires, but it sure isn't always easy. And I can only imagine that the older he gets the harder this will become.
We are hugely looking forward to our annual 'one whole week' together as a foursome in August. This is only the third week we will have had together as four, ever! Most people get an average of four weeks off work a year for family time, but Stuart gets just one week a year to be with us, the rest used for appointments in Bristol, hospital stays etc. This means we cherish this one week, and our weekends even more. And we have lots of memory making and wish granting to cram into that time. We are always incredibly thankful to every individual, charity or organisation that offers to helps us to make the most of this time, to cherish the gift of our family unit whilst we are able to. These are the people that truly take the time, to reach out a hand to help and make life that little bit more beautiful for us. The world needs more hearts like these, always thinking of experiences that are possible for Noah.
This post isn't meant to come across as being down in the dumps but I always try to be as real as possible in my blogs, and I have days (lots recently!) when I wish I could change a lot of things. But I know I can only do my best to make the most of every day the best I can, to fill it with as much laughter and love as I can, whilst I can. And every now and then, my precious six-year-old girl will come out with something that immediately gives me a 'pick me up'. Today it was this line:
"When I grow up I want two children just like you. One that can use its legs and one that can't use its legs and has a trachy."
Her reason being that she loves her brother and she wants a baby just like him. This melted my heart. She wouldn't change him for the world, and we wouldn't change him for the world. And my biggest wish of all, is that others would look at Noah, and not take pity on him, not try to change him. Rather love him, embrace him and help create attitudes like my darling girl's, of acceptance and love and kindness, to help make this world a better place for him. And in turn this would make the world a better place for everyone.
Image: Author's own
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