The approach of a birthday is always such an exciting time, especially when you are going to be eight! So, with party invites to do and Ben 10 characters to track down, it's a busy time, yet I cannot help but go back to Tom's birth and marvel at where we are now…
For those of you who have shown such kind interest in Tom, his health and progress I hope you will enjoy hearing about him and for those who have heard me mention (oh ok, more than mention!) my three lovely children, may I share the beginning with you…
I often wonder if life were a book and we had been able to peep ahead into the pages to see our life now, would we have cried less and worried less? I suspect not as grief has such a part to play and is a process all its own.
4th May 2001 was a gorgeous sunny hot day, in fact "a perfect day to have a baby" I remember my consultant happily commenting as I was prepared for my Caesarean. Dan and I were just so delighted to be meeting our first baby.
I had finished work at QVC the previous week so was all ready to relax and nest for two weeks. However, we sold our house, bought another and lo and behold Tom was too busy somersaulting to be born naturally, so an earlier date was planned for his arrival, resulting in, not a lot of relax time after all!
Nothing could have prepared me for the complete and utter shock that followed – Tom was born with Down's Syndrome.
"How could that be? What did I do wrong? I'll never work again; I'll never smile or laugh again. We'll have to sell the new house." Yet within the barrage of thoughts that flew around my mind, the overwhelming one was of total love for my beautiful, beautiful boy, my tiny little baby.
Call it motherly instinct but I just knew the second I saw Tom's little face that there was something wrong, something different. He just wasn't the baby I had expected to see, if you can understand.
All the professionals told me he was fine, but I just knew. Eventually we were seen by the paediatrician and she agreed that Tom did indeed show characteristics of Down's Syndrome. At this point he was a vivid shade of purple and struggling to breathe.
A photograph (above left) was taken and he was raced away to Great Ormond Street by ambulance to find out if he had complex heart problems, which sadly accompany many babies born with Down's Syndrome.
I was told after he was safely returned to me that the photograph was in case he didn't make it! Call it ignorance or shock, but that truly hadn't occurred to me.
When I look at that precious photograph, I see my valiant (yet such sad) attempt at a smile. I tried to pin that smile on then, amidst the devastation. I also know I pinned it on many times in those early days – call it a coping mechanism if you like. However, I feel incredibly thankful that I felt such love for Tom instantly as I know it is not guaranteed.
Tom's early months
During the difficult first month of Tom's life I took huge comfort in the cards and letters which so many of you sent, lots of you sharing your own experiences in words and poems which I have kept and treasure. How I cried (well sobbed, actually) during those long worry-filled days and nights with Tom in special care as I read those special words from so many of you.
It's funny how alone you feel and yet realise that many have trodden the path before you and that many will after you, gives comfort and hope.
I know that I've been a little nervous of sharing my thoughts before, as for everyone it is a different story – some mirroring mine and others so different. I'm strongly aware that some will agree with, and many disagree with comments I make, as I do with others.
To gloss over the sadness Dan and I felt and still do feel sometimes (more for the difficult times ahead for Tom than for ourselves these days) would be unfair to those people and their families.
Yet, I want to give hope to anyone feeling grief. You WILL feel better and most certainly you'll laugh again – LOTS! Of course it has been, is, and always will be tough for us in some ways.
Luckily, after those early years we were discharged from Great Ormond St and Tom's health remains really rather good.
Of course there are the frequent visits to numerous health professionals to monitor pretty much everything! Eyes, ears, thyroid and varying exploratory ops, one of which gave us a wheat free diet enabling a nappy-less world…finally!
There's also a constant battle for educational provision. We are very lucky indeed that our local mainstream school provides a healthy and inclusive environment which Tom, and I'm sure the whole school, will benefit from.
Without a doubt life is completely full on. We try and take each day as it comes. I still find it so very hard thinking of (and therefore worrying about) Tom's future. But all that aside, the joy, utter delight and love we share is so incredible, I actually find it difficult to put into words (and that's saying something for a QVC presenter!!)
So, how do I describe Tom?
Beautiful – blonde as can be and blue-eyed to boot!
Tenacious – from day one, which has stood him in good stead, he tries, tries and tries again until he cracks it!
Humorous – he has the most contagious giggle.
Loving – now that's one I must explain. I struggled so much with this description, often used to describe children and adults with Down's Syndrome. However, I now understand what it means, as generally children lose their inhibitions and are more socially aware of acceptable behaviour, except perhaps a lot of children with Down's Syndrome.
So yes, the cuddles and kisses ARE delicious, as I'm sure the lady Tom hugged in Tesco's would agree. And the teenagers he sidled up to saying "Hello lovely girls" (their faces were a picture), or the man who Tom took a shine to and insisted on sitting on his lap! If that makes him loving then there's no end to it! Tom is sensitive, knowing instinctively when someone is sad and is always the one to fix it with a special touch or kiss. You know I could go on and on.
Coping day to day
Many people said Tom had chosen us as his parents. It gave me comfort in those early days, but again I battled with that as some babies I knew had been born to parents who couldn't or wouldn't cope. I wondered if God had given Tom to us as a lesson for us to learn…
I still don't know the answer to that one, but what I do know is that Tom is wholly loved by us, appreciated by us and by so many people who know him or meet him.
Joseph and Madelaine have a brother who is a little different to them but that begs the question, what's normal these days? They adore each other, well for now at least. We are a lucky and happy family and I'll jolly well do my utmost to stay that way!
Would I wave a magic wand and get rid of that pesky tiny extra chromosome, number 21? I jolly well would, for Tom, so life may be that little bit easier for him. But, only if all the other amazing bits that make up my fantastic son are retained!
I'd like to leave you with the Down's Syndrome website and a most inspiring poem – Welcome to Holland by Emily Perl Kinglsey. It was sent to me by some special QVC viewers and it lives on my fridge and I read it often.
With much love and thanks for your ongoing support,
Claire, Dan, Tom, Joe and Maddie.
For more information on Down's Syndrome visit www.downs-syndrome.org.uk.