Today is the 21st March. 21 – it's SUCH a magical number isn't it? It means perhaps The Big Birthday Celebrations, the real move into grown-upness! The key to the door? Or for me and so many others it is a very significant number for a completely different reason.
21 is the cheeky little (tiny in fact!) chromosome that completely turned our world upside down and backwards almost 12 years ago on 4th May 2001 when my first baby was born.
Tom had become the '1 in a 1000'
That is the number of babies born in the UK with Down's syndrome every day. So today is the 21st March and is Down's Syndrome Awareness Day, held on the 21st to recognise the babies, children and adults in our world, our society who have Trisomy 21 – Down's syndrome.
Many of you have shared my journey through my blogs, in particular the one I wrote as Tom approached his 8th birthday when I shared my thoughts and my fears in those early days.
Many of you have supported me and my family and enjoyed hearing our adventures! There will however be some of you who don't know that I have a son with Down's and maybe some of you who don't really know what that means.
I guess that a day like today is about showing and sharing with the world that Tom (my son) and all children and adults with Down's syndrome are, aside from their differences , in many ways the same as you and me.
They have hopes, dreams, fears and aspirations just as we all do and it is our job as a society to recognise this and do all we can in order to help them to achieve all they can and should. As today is Down's Syndrome Awareness Day I thought it may be good to share a little.
What is Down's syndrome and how does it happen?
The most common form is called Trisomy 21 and accounts for pretty much 95% of all people who have Down's. If you recall your biology lessons you'll know that we are each made up of 46 chromosomes, 23 inherited from each parent. Except that, for Tom and many before him and many who will be born after him, there was an error in cell division called Nondisjunction resulting in three copies of the chromosome 21 becoming part of his chromosomal collection making him, well , 'Xtra' ordinary I like to say !
There is nothing missing quite the opposite in fact. There is an added Xtra something!! The trouble with the addition of that tiny additional chromosome is that it causes physical and developmental delays and varying degrees of learning disabilities from moderate to severe.
There are physical similarities shared by all those with Down's with features like the almond-shaped eyes, smaller noses, the crease on the palm, smaller hands and fingers and an overall smaller stature. Although they also have their family's features beautifully blending with their own making them distinctive yet individual.
Whilst older mothers have a higher chance of having a baby with Down' s syndrome, more babies are in fact born to younger mothers. I remember at our weekly gathering of babies born with varying 'Special Needs', I met an 18-year-old girl who was coping with motherhood at a young age, on her own and with all the extra emotions and fears that those early days bring – her daughter too has Down's syndrome.
People who have Down's syndrome are not 'suffering' from Down's syndrome, they don't suffer, they live, laugh and love just as we do and moreover without the prejudices we learn .
There are, however, medical issues that are more prevalent for them and many babies are also born with heart problems. Some problems (as we experienced with Tom ) require no intervention, though when Great Ormond Street finally released us from their care, I did ask if they were totally sure and couldn't we just come back next year just to be sure Tom's hole in his heart had truly closed.
Dan and I feel incredibly lucky that aside from all the constant and seemingly endless checks with Tom for his eyes, ears, thyroid etc, his life so far has been relatively free from health problems and we are so appreciative as sadly this is not the case for everyone.
In the press and on the television there are superb examples of children and adults with Down's syndrome achieving many tremendous things – marriages, modelling, acting, restaurant owning
and of course, the incredibly inspiring athletes who we all marvelled at during the Paralympic Games last year. Check out this incredible story of a young man called Tim Harris.
Tom and the next chapter
I am so totally thrilled to see this brilliance shared and it gives me great hopes for Tom's future, yet I ask you to remember that every single person with Down's IS different and for some their achievements will be much smaller, however to them and their loved ones they are immense .
As a family we were truly lucky that Tom's achievements, (yes some tiny and some huge!) were totally embraced and enjoyed by his primary school. I will always be grateful for the inclusive attitude shown by all the staff and pupils. On the final day of school when the limo drove them around the village and the disco was cranked up to 100 decibels, Tom and his class friends were busy crying all over each other (not sure if Tom quite knew why, but he managed to squeeze out a tear or two just to fit in!!).
I too was crying as so many of the parents came and thanked Dan and I. They felt that knowing and growing up with Tom seeing and accepting his differences had enriched their children's lives and they would be better people in the future because of Tom.
After huge deliberations, many school visits , soul searching and seemingly endless tears (from me!) we decided that in September Tom would gain most from continuing his education within a mainstream secondary school environment .
However, I had been shocked and saddened by the lack of knowledge and indeed ignorance of some people I encountered at this time and was very concerned that this uneducated attitude was indeed still prevalent.
This has made me even more thrilled to be told by Tom's school that the Learning Support Team at his Secondary School, will today be wearing the same T-shirts that Tom is modelling oh so coolly!
KEEP CALM, IT'S ONLY AN XTRA CHROMOSOME
What a fantastic statement? Plus, the children will also be sporting different coloured socks – still socks, but different! How wonderful that they are recognising the importance of this day by helping to raise awareness and educate their pupils.
After all, it is a day like today that paves the way for a better understanding of Down's syndrome and an acceptance of all the wonderful babies, children and adults who WITH their differences bring such joy and happiness to our world.
Thank you so very much for all your kindness and support that you have shown to Tom and to my family over the years and a huge thank you for taking a moment to read my words. Please do leave a comment if you would like, I love to hear from you.
Claire and Tom xxxx
P.S. Special thanks to my special friend Lindsey Brook (www.brookphotography.co.uk) for taking this gorgeous picture of Tom.
For more information visit www.downs-syndrome.org.uk