Why I love my son's disability

I recently read this quote by Sinéad Burke and it resonated with me so I wanted to share it here: "I was born disabled and I’m very proud to be disabled. My greatest challenge is that I live in a world that wasn’t designed for me."

I love Elis' disability and I'll tell you why. It's not just because it's my duty as his mother to lift him up - figuratively more than physically! With all my children I've believed strongly in letting them figure things out independently as babies and toddlers. I may guide and show support so they may learn better but ultimately I want them to succeed on their own. It is greatly spurred on by me wanting him to feel like Sinéad, I want him to be proud of who he is, and what his disability gives him that average height people miss out on. It's perhaps a different way of looking at it, but to me it is the only way.

When we got his diagnosis over a year and a half ago all I could do was worry about the health implications and the cruel people out there who may laugh and stare at him. As for the former, we knew from day one that all we could do was take things as they come. Elis blows us away with how well he's been doing (apart from regular ear infections, I feel more and more certain he has glue ear. Something we'll find out more about at his next audiology appointment in a few days), but I also know a big part of him continuing to do well is a life with various regular check ups to make sure things don't change. Thankfully the most risk filled year, the infant year, is behind us. His determination along with us following all recommendations with regards to care for his spine, in particular, have helped make sure he is thriving. That is not to say that there aren't parents out there following all the guidelines who still face many struggles with their little ones! There are so many bad things that could have, might still, happened to our son and I'm forever thankful for how well he's doing.

As for the latter... as my husband put it when I was pregnant: "There'll always be dickheads out there" and you know what it's true. I've mentioned it before, as a mother of daughters I have worries for them too. Not the same worries as for Elis, but basically motherhood curses you with constant worry. I can also turn that around in the sense that, I am sure there will be a lot he doesn't like about himself. unfortunately that is just human nature, and if I want him and the world to not look at him as different, I need to make sure he knows that we are all consumed by insecurities. Sadly some people more so than others, but insecurity doesn't discriminate is my point. Don't get me wrong, there's parts of his disability I wish I could unburden him from, like the pain and health risks. But I want him to know that pain is universal.

I don't want him to know that out of heartlessness, I want him to know that to make him strong. I want him to see that being "average height" wouldn't solve life for him, because I think that is important to know. It is easy to think "if only I were..." But Elis' biggest problem will be what Sinéad mentions, that he lives in a world that isn't built for him. Now I can't change global infrastructure but I can at least try to be vocal and change people's perceptions and understanding so that he hopefully grows up in a more inclusive society, and I can help teach him to be as adaptable as possible.

Believe me I will do everything in my power to continue spreading the new things I learn, but the most important battle, for me, is here at home. I can't let the worries and negative aspects about his condition get to me because then I am not able to guide him to loving himself. Of course I need to acknowledge what's tough for him, but mostly I need him to learn to see how amazing he is BECAUSE of his disability.

Those with achondroplasia generally have joint hypermobility, and while that causes you great amounts of pain (I know as I have it myself), it also means he can do some amazing things with his body that AH kids, even his age, can't do. I know it can be difficult to remember when you're in pain, but there is so much he can climb and get down from because his joints go every which way. He's also got crazy upper body strength, something I've gathered is common in achon people. He can pull himself up onto thing that look impossible in scale to him because not only is he strong on top, but he carries less weight below. Now this is perhaps not practical in every day use all the time, but it really is amazing what he can do that I'm sure he'd never achieve if he'd been AH. His low centre of gravity also helps his balance so much, he'll stand or walk along narrow ledges without ever so much as hinting at a wobble. 

It sucks that he'll have to deal with a world that isn't built to his scale, but it has to be amazing for his brain to figure out how to get around things. I hope, in time, the world will become ever more flexible. But in the meantime I will do my utmost to make sure he realises that a lot of what he has achieved thus far is thanks to his disability, that it is his super power, that he can get around the challenges the big world throws at him. A lot in life sucks and is tough for all of us, tall or small, it is our choice as to how we cope with life's challenges. It's a harsh truth but a truth nonetheless: as someone who easily struggles with the ups and downs of their own emotions  as well as physical pain I am not saying it is easy either, but my husband always says "it is what it is" and he's right. From there you choose your own path. Most of all I hope he feels like Sinéad Burke, that he loves his disability for what it is. We've met some amazing people so far thanks to being brought into his world. I won't always be able to relate to all his problems, but then I wouldn't have anyway because we are all different in different ways. He is a human, he is beautiful, and we will work on making sure he loves himself enough to not notice the dickheads in the world, just like I'll work on that with his older sisters. With all my children I will also work on how they can influence the less educated people in the world, whether it's people picking on Elis for his height or my daughters because of their gender.

This post was inspired by Sinéad Burke's quote, but also by this thing he likes to do right now which is climb onto his walker, sit on the top of it and rock his bum back and forth to make it move. Now I'm sure that were he AH the walker would topple over before he reached the summit. I considered keeping this post for October as it is "Dwarfism Awareness Month" BUT next Sunday I will be walking to the highest mountain in Scotland, Ben Nevis, to raise funds for the amazing Scottish region of the Dwarf Sports Association. A charity that has helped feed my positive outlook for his future and introduced us to some amazing people, people with dwarfism and average height people, who not only want to give the short stature community a even playing field when it comes to sports but who all strive to make our world more inclusive.

(If you're interested in donating there's still time to do so, just head over to my "Support my fundraiser" page on the blog). And remember, we've all got super powers - so be a little kind to yourself and remind yourself of what differences you have from others that make YOU unique and beautiful!