Arthro-Gry- WHAT NOW?
When I learnt how to spell at school, arthrogryposis was one of the words I wanted to master straight away. After all it was me or my mum who had to spell it for numerous doctors and nurses who either hadn’t heard of it or looked at us in horror as they began to try and type it out. Arthrogryposis is a physical disability which I was born with. Get ready because here’s the sciencey bit.
Arthrogryposis Multiplex Congenita (AMC) is a term used to describe over 300 conditions that cause multiple curved joints in areas of the body at birth. It varies from person to person with the commonality being stiff joints and muscle weakness. The disability is not a result of a problem in the formation of the joints, but rather with the development of the connective tissues around them that occurs after 8-10 weeks of pregnancy. There are many causes some of which are inherited, but my story involves abnormalities of connective tissue where the tendons, bones, joint or joint lining, develop in such a way that normal movement cannot occur in the womb.
When I was born, both of my feet were clubbed and my right wrist was kind of hooked. My feet and hips were operated on during my younger years so I learnt to adapt even as a baby and toddler. I didn’t crawl, I bum shuffled everywhere, (which is probably why I like a lot of padding in my butt area)! As I grew up walking became more tiring and so we ordered a Maclaren chair.
In all honesty I hated it! It looked like a pram! Bearing in mind I was a bit older now so I understood looks and comments directed at me. I hated being called a big baby even at the age of about 7 or 8. So we got a wheelchair! We took it everywhere with us, but with a new awesome mobile seat came new comments. The one which stood out for me was one from a little old lady. My mum had gone into a shop and ‘parked me outside’. As I sat people watching said little old lady walked up to me and gave me a look of what could only be described as her losing her dentures. I looked at her and smiled as if to say ‘yeah you OK can I help you with something?’ The response I got was ‘I’m so sorry’. That was it. No explanation as to why she was sorry and as she walked away I sat in my wheelchair in disbelief. What was she sorry for? Then I realized she meant because I was so young and using a wheelchair. It was at that moment it hit me. I wasn’t normal at all, I was bloody awesome! She had nothing to apologise for. I had an amazing childhood. My mum was my best friend (also awesome) and I had a chair I could sit in whenever I wanted.
Don’t get me wrong I still had the odd ooh look at that cripple comment (I still do), but i learnt to love the differences as opposed to hate them. When I walk, I waddle, like a duck. I used to hate my wrist as it looked alien-ish. Now I can dress up as Captain Hook without having to pay for the accessories! When I was a bit older, about 18, I desperately wanted a job. So I applied at my local cinema. I got the job after about a week of daily calls asking if they had made a decision. I loved it.
My independence grew and so did my confidence, and with confidence came my first boyfriend. I began to feel ‘normal’. I won’t dwell too much on the boyfriend part because yes we were together for 7 years but it wasn’t to be. Towards the end of the relationship I knew I wanted out, but the fear of my disability preventing me finding someone new, who would accept me as I was, waddle and all, scared me.
I moved into a house on my own as I needed to build my independence and confidence up. It felt amazing, I was back and ready for business.
After about 6 months of living on my own with my shiz tzu-Barney, I received a text. This text was not what I was expecting but it was the text which changed my life for the better.
It was Andy, about time too! He asked me on a date! I obviously went and well the rest is history, but during the time of trying for a baby the thought of my disability was making its appearance well know in my brain! “Hey Bex, do you reckon you can get pregnant with your dodgy hip”. “I wonder if the baby would have what you have if you did get pregnant”. “Would Andy be angry if you passed it on”. I knew the last one was stupid because Andy only ever saw me not my disability, but the thought was still there.
Fast forward to the GP’s office. I was told that Arthrogryposis shouldn’t effect the possibility of getting pregnant. So on we went to the balloon tests and needles sucking out my blood and Andy getting very friendly with a cup. The results were in, I was clear, and apart from a few factors so was Andy! I was so relieved! It wasn’t me!
OK fast forward to the 20 week scan. This was it. This was the moment we were going to find out if Charlie had Captain Hook hands or clubbed feet like his very nervous mummy! I lay on the bed quietly watching the scan screen desperately trying to find his hands and feet!
Then the sonography nurse said it, what we were so desperately want to hear. “Everything looks fine, nothing to worry about here”. Obviously scans can’t show everything but she was pretty sure his feet were straight and his wrists weren’t that of alien DNA. I had to be booked in for a c-section as my hips didn’t spread as much as the midwives like when they are trying to pull a head out of your vagina. 19 weeks later he arrived or should I say he was cut out of his home. All the usual checks were done and he was clear of arthrogryposis. As parents you love your kid with all your heart regardless of anything but the relief is overwhelming when they get the all clear!
The last year has been hard, not because of Charlie, he’s been a dream, but because of my disability. I've never really struggled and I've 'managed' perfectly! I guess what I want to say is I wish I could do more. I wish I could take him out for a walk, I wish I could run in a field with him. I wish I could teach him to ride a bike or do a handstand. I can't do any of that, but you know what I don't care. I can teach him and give him so much more. I can teach him kindness and love and more importantly how to enjoy life and have fun. So if you have a disability don't let the fear of striking out keep you from playing the game. I wouldn't be without my boy. He has brought so much to my life even though he is a little bugger at times!
Enjoy every second. Never regret something which made you happy at that moment in time and just have fun. Life is to be lived not to be panicking over.