I’m a better person because of my son and his Down’s Syndrome
MUM FARRINGTON CLAIRE SHARES THE LESSONS SHE’S LEARNED SINCE THE BIRTH OF HER SON THEO
At the beginning, Down’s Syndrome was the first thing I thought about as soon as I woke up... I hadn’t yet learned that his condition was only a small part of my son.
RAISING a child with Down’s Syndrome can be unpredictable but, above all, hugely rewarding and life-affirming, says Claire Farrington, 41. Two years ago, she and her partner Andrew Papadimitriou welcomed their son Theo into the world 11 weeks premature, and three weeks later, they discovered he had the genetic condition.
Here, the mother-of-one from London, who writes the blog Mum On a Different Path (mumonadifferentpath.wordpress. com), shares some of things she’s learned over the last two years.
1 TAKE IT DAY BY DAY
WHEN I envisioned my family years before we three were a reality, I didn’t give one thought to the number of chromosomes we’d have. Down’s Syndrome was a world far away from me – obscured by out-of-date assumptions.
But when the future becomes totally unknown, just as it did when Theo was diagnosed, you fear it.
I had so many questions about what I had taken for granted. Would he walk, talk, be independent, get married, travel, have a job?
But why did I have to try to see the future for someone who was only weeks old?
Do we know all the answers with a typical child? Of course not. Life never comes with guarantees.
I can honestly say the last 24 months have been the best and the most enriching of times. 2 NOT EVERYTHING IS LINKED TO DOWN’S SYNDROME AT the beginning, Down’s Syndrome was the first thing I thought about as soon as I woke up. I churned it over in my mind constantly. I hadn’t yet learned that his condition was only a small part of my son.
At first, I would attribute all of Theo’s behaviour and actions to the condition. If he got a little sick, it was Down’s Syndrome. If he refused new food: Down’s Syndrome. Equally, his easy-going nature and distinct lack of screaming: Down’s Syndrome.
It’s important to remember the personality you see developing in front of your eyes is made up from a sum of many different parts.
Yes, Theo wouldn’t be Theo without his extra chromosome, but he wouldn’t be Theo without everything else in his life either. 3 THE ORDINARY CAN BE AMAZING I CAN now leave Theo with a pot of yogurt and a spoon and it all goes in, mostly. And I’m amazed – it’s a real achievement for a little boy, not only born at 29 weeks, but born with low muscle tone. Most physical activities will take much longer for Theo.
I was also ridiculously happy seeing my son learn his first bit of sign language. Being a mum of a child with Down’s Syndrome grounds you like nothing else. You’re given a gratefulness for the straightforward, everyday stuff that you would normally just expect to happen. When it finally it does, it’s pure gold dust.
Like Theo’s breathing (once heavily assisted by a machine), his eating and drinking (he was tube-fed for months), his overall health and strength (as a premature baby this was never a given).
Every single time I hold
him, I’m just so thankful he’s here.
4 YOU INHERIT AN ARMOUR
SOME days it doesn’t feel like a fight, but on the days it does, you find a strength you didn’t think you had.
You realise you’ll have to work a bit harder for school places than parents of typical children. But it’s doable, not insurmountable.
You’ll soon be a veteran at fielding the surprisingly kaleidoscopic range of responses to the news your child has Down’s Syndrome (I’ve heard some unintentional shockers).
5 YOU GAIN A NEW COMMUNITY
THE NHS page explaining Down’s Syndrome – probably the first thing many new parents find themselves reading – is clinical and didn’t give me much of a clue. But I also found blogs, Instagram accounts in their thousands, shared advice, a camaraderie and a virtual community in which we felt at home and supported.
At the beginning, you’ll probably be the only one in the hospital that day, who hears the news, ‘I’m sorry to tell you your baby has a chromosomal abnormality known as trisomy-21’.
It’s isolating and frightening, but you’ll take comfort from all the future references you’ll see of families simply getting on with life.
Soon I was sharing tips and the long-awaited achievements with an incredible congregation of parents.
6 YOUR CHILD WILL SHIFT PERCEPTIONS ALL BY THEMSELVES
I REMEMBER browsing shops in the early days and passers-by would linger a little longer. I was always hyper-aware of the looks we’d get. Now, I don’t mind at all. In fact, I’ve come to believe it’s rather a privilege. If we’re in a restaurant, Theo will make everyone around him smile. We’ve made so many lovely dinner companions and bus buddies, and all the time, I know Theo is ever so slightly altering perceptions. We, as his parents, just sit back and watch him make the world around us a better place to live. Our children have an innate ability to draw out the good stuff deep within people, and it’s an honour to witness it.
7 YOU’LL BE A DIFFERENT PERSON
POST Theo, I have naturally re-evaluated everything and it’s completely reshaped me.
It sounds corny, but I know I’m a better person because of my son and his Down’s Syndrome. The important stuff comes into focus and everything insignificant drifts away. I suppose it’s a painful enlightenment at first, but what remains is a startling clarity.
It’s not just your family’s life that feels this positive force, it extends far and wide. And your child is at the epicentre. Which is pretty amazing, really.