Written by Kerry
Oh those early days…
When I first got my eldest boy George, then 2, diagnosed with Fragile X Syndrome, I had no clue what it was, whether he would live or die. It was just a simple letter through the post, after previously being told that his 7 blood tests were clear.
The date was 25th July 1999. Funny how it’s etched into my brain. It was a beautiful day and I was sat on the backdoor step having a cigarette and going through my post. The first letter I opened informed me he was being awarded high rate DLA care and mobility. His health visitor had advised me to apply; I didn’t even know what it was then. The next letter I opened was from my local hospital, roughly 5 lines long informing me George had ‘A condition called Fragile X Syndrome” and that we were being referred to Guys and St Thomas’ genetics dept (I still have the letter somewhere, still cannot believe the way I found out)
My emotions went like this: Confusion- what the hell is Fragile X Syndrome? Will he die from it? Numbness, Panic, horror, fear, relief …then the shaking started, followed by the tears…
Autism had been mentioned very early on and I had previously contacted the NAS for information. My immediate thought was to contact them for advice re: this diagnosis. They referred me to the Fragile X Society. “The what?” I thought.
Anyway, I rang the number they had given me and was answered by a very nice lady who sounded perfectly sane. Unlike me! I must’ve sounded like a demented alien from the planet Zong; blubbering, stammering, snorting, wailing, and making no sense at all. She was amazing with me. Would not let me get off the ‘phone until she knew I had calmed down and was at least semi literate. She had a teenage son with the condition and told me some funny stories about him, reassuring me that all was not lost, ‘No, he would not die from Fragile X’ and that everything would be fine. Two hours of me asking her a zillion ridiculous questions, and she burnt the cakes she was baking! (I still feel guilty about that!). She also sent me lots of information a few days later.
We were lucky in that we saw the geneticist very quickly (possibly me ‘phoning up and gibbering down the line helped) and were told that George would be at the severe end of the spectrum. I remember asking what this meant in real terms and was told that basically he would ‘never grow up’. Ah, that made more sense; a typical man then, I thought.
However, I then had to get my other son Sid tested. Sid was only 10 months old and a very placid baby (oh, how that changed overnight when someone decided to turn the key in his back) so I convinced myself that he didn’t have it, that the flappy hands was just him copying his brother…
I was wrong. The tears continued.
When they then said I would need to get my girls (then 9 and 11) tested once they were 16, I argued that I wanted them tested now. I needed to know. They were reluctant and were pretty dogmatic in their refusal. However, I am more dogmatic (perhaps a carrier trait?) and they finally agreed. I waited 6 months for their results as their machine broke! Every scenario went through my head; supposing Amelia has it, supposing Lucy has it, suppose they both have it…not once did it enter my head that neither would have the pre-mutation. But thank God that’s exactly what happened. Both my girls were clear. Hallelujah!
During all this testing I also had to contact my brother and his wife, she was 5 months pregnant with their first child. That was a very difficult conversation to have! My brother is also a carrier. Luckily they had a son.
I cried almost constantly for 6 months. I’d open my front door to visitors, crying. I’d pick up the ringing ‘phone crying, I’d be walking around Asda and crying over the frozen vegt section…I thought I would never stop crying:
Here I was with my four beautiful and perfect children, and now two of them have a life long severe disability. How can this be?
But not once did I think to myself “Why me?” Instead I thought “Why not me?”
I cannot express how much ‘The Fragile X Society’ helped me in those early days, particularly the wonderful and unique Lynne Zwink (she was then and remains one of my all time heroines, along with Germaine Greer and Audrey Hepburn). I lost count of how many times I rang her asking inane questions or how many times she contacted me to ensure I hadn’t died from dehydration from all the tears. And her voice; I could listen to her all day!
When Lynne asked me a few years later to write a nomination for ‘The Society’ to receive the Queens award for charity I didn’t hesitate. But when she then rang me to tell me ‘The Fragile X Society’ had won it based (according to her) on my nomination and that I was invited along with her and Lesley Walker to attend Buckingham Palace to meet the Queen and Prince Philip, I nearly passed out. How could I go and meet them? Supposing I had to open me gob? However, she persuaded me and off we went some months later and what a fabulous day we had too. The horse’s doovers were to die for and I drank a fair few G&T’s before their grand entrance (for my nerves obviously!) And I swear Liz said to Phil in her squeaky voice, “Oh look Phillip a real live chav, goodness me, better lock up the corgi’s pronto!”
Since those early days my life has changed in ways I could never have imagined. Like anyone with a disabled child or children, we never know what’s around the next corner or how we will deal with it. They have given me strength, courage, determination, tenacity, acceptance and tolerance. My two ‘little’ boys are now nearly 17 and 18. They are both over 6 feet tall. They are loved by so many. No one says their names without a smile on their face. They light up my life in a million ways every day. We cannot go outside the front door without someone saying “Hi Boys”. They have taught me far more than I could ever hope to teach them and opened so many doors otherwise locked for me. Because of them I went to college and came top of the class with all 4 distinctions in my Diploma. Because of them I went to University and got my 2:1 degree in Sociology, because of them I undertook my PGCE. Because of them I have so many friends I would never have met. Because of them my life is so much more than merely worth living. I have too much to be thankful for and it’s all because of them.
Throughout this journey ‘The Fragile X Society’ have been a constant source of support, information, advice and sometimes just a listening ear. Without their existence those early days may have had a much less happy ending.
I wish a friend would knock and say
“Can George and Sid come out to play?”
“Let’s take our bikes and go to the park”
“As long as you’re back before it’s dark”
I wish my Sid could sit and chill
Without the need of a Ritalin pill.
I wish my George could read a book
And engage me saying “Come and look”
I wish I didn’t worry so much
And could give my boys a gentle touch
Without the fear of being hit,
Or even worse of being bit!
I wish for them a life of joy
Just like every girl and boy,
A life where they can get a job
And earn themselves a nice few bob.
Get a house, have a wife.
Really just a ‘normal’ life.
I wish they didn’t need so much
And hold my heart in such a clutch.
I wish I knew before they came
The heartache and never ending pain.
But the pain I feel is far outweighed
And heartache I do farewell bade
When I think how very lucky I am,
Although none of this was in my plan.
To be so blessed with these little guys
Who are just perfect in my eyes.
Innocence they have untold,
And with their love my heart they hold.
The laughter they bring, the joy to my heart.
My love has no ending, it has no start.
It is just there for always and forever.
I am nothing without them and I could never
Be without my boys.
The pain is nothing compared to the joys.
I don’t envy others; they’re not as lucky as me.
For the plain fact is they make me free.
Free to challenge and free to fight
And fight I will, with all my might.
For my boys are worth more than words can say
And I will love them beyond my dying day.