'Down Syndrome: The scenic route'
Numbers are an everyday part of our lives.
They inform pretty much everything we do, how much something costs or how old someone is; but they don't really have a significant impact.
A number isn't the be all and end all. However, there is a time when a number can mean everything - when it’s used in relation to chromosomes.
The average person you pass every day on the street has 46 chromosomes. If you have 47, then it means you have Down syndrome.
I have two brothers in law, both of them have Down syndrome.
Prior to meeting my husband, I'd never encountered anyone with Down syndrome, or any other learning disability for that matter.
I think I was more nervous to meet them than I was to meet my prospective in-laws. I'd done my research, looked up what I might expect; the problem is that the websites are all factual; the sites give details of physical characteristics, examples of learning difficulties, medical difficulties or other associated conditions. I'm not being critical, but it just didn't give me the answers I wanted.
I wasn't worried about the physical manifestations; it was more that being introduced to the boys meant our relationship was important and likely to go some distance. I wanted to make a good impression.
The oldest of the two brothers is Tom. Back then, he was painfully shy; he didn't really speak to anyone outside of the family. It's quite unbelievable to look back at how he was, as now he says exactly what he thinks and is not shy about anything (seriously, nothing). He'll speak to anyone.
But then...well, it took a good six months for him to acknowledge my existence and to begin to call me 'Girl' and, well, after another three months, on a family trip to the Zoo, he finally called me Emma, well Emba. I cried and the name stuck.
Charlie was ten years old when I met him and he was instantly my friend - I loved him from the get go. He used to sneak into my now husband's room once Jim had gone to work to sit in bed with me, we'd play games, do jigsaws and he'd tell me endless jokes, that's one thing that has never changed; Charlie's love of a bad joke! Don't get me wrong, I'm sure there were times he annoyed us both as we were a new couple and he wanted to be with us 24/7, but he always made me feel so welcome.
I've learnt such a lot about people and emotions and, well, behaviour since I've been a part of Tom and Charlie's lives. For example, if you like someone absolutely tell them if you don't like them then tell them that too; life is too short not to be honest.
Don't hold a grudge, life can change in an instant so there's no point in being angry. Always say you're sorry, such a small word can make such a big difference.
Life for Tom and and Charlie is black and white, there are no shades of grey. Tom has a really Disney view of love and it is BEAUTIFUL. Girls are Princesses and Boys are Princes who fall beautifully in love and live happily ever after. Tom always knows exactly the right thing to say at exactly the right moment.
The boys have shown me that you should always do what you want to do, regardless of others opinions. If you want a bouncy castle at your birthday party regardless of your age then you should absolutely have one, birthdays are fun right? And if it rains on your birthday, you should absolutely move it inside and sing Karaoke...and take your clothes off! (Sorry, Stephen) Ok, so maybe you should check that you have an appropriate audience, but then do it!
Ok, so I admit that you can't always do every little thing that you want to do, but my point is that they both live their lives to the fullest and are totally true to themselves. Having this condition doesn't prevent them from doing anything, they are more than the factual descriptions, more than the characteristics that the lucky 47 causes. I know that my life would have been duller and darker without them both in it.
They've taught me to be more honest, braver and more confident...in fact, they've just taught me to be more. I'm not saying life is perfect, there are massive moments of frustration but they are no more frequent than with any other child/teenager/adult. I know there are days when my Mother in law has to count to ten very slowly in her head before answering either of them.
Neither of my children has Down's syndrome. If I had never met Tom or Charlie I'm sure I would have had the tests offered during in pregnancy and I might have made a hard decision, but because I have had them in my life I was unafraid.
Down's syndrome doesn't have to be scary; it doesn't mean that the baby won't have the life you always dreamed of, it just might take a while longer or go on a slightly different route, but it will get there in the end.
Down's syndrome isn't life threatening in itself and in my opinion it isn't something that needs to be cured; in my experience, it isn't even something that you need to adjust to, they are just the same as everybody else...Tom and Charlie just have the extra little number.
As I write this, Charlie has just finished his final term at residential college in Shropshire. He's now a confident soon to be 22-year-old man who is completely self-sufficient.
He is preparing to move into a property with one of his friends; he'll be attending horticultural college a couple of times a week so he can really indulge his passion for gardening and he is working out what sort of job he'd like to do. Whilst still living at home, Tom has the most active of social lives, he is out regularly whether that be bowling with his friends, attending the gym or his weekly disco, I'm really rather envious, he goes out a lot more than me!
I call this condition lucky number 47; I have no doubts that there will be mixed reactions to that, but I know that anyone who, like me, has spent a significant amount of time around someone with Down's syndrome, will agree that we are lucky to have them in our lives; yes, that pesky chromosome causes some differences, but it's what's different about them that makes them who they are.
Milestones may take longer, the challenges may often be greater - but often you learn a lot about yourself when you take the scenic route and the view still takes your breath away.
Those with Down's syndrome are more than a number, more than an extra chromosome, and crucially, they don't see themselves as any different to anyone else.
To me, that makes it beautiful.