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Seven things my Down’s child has taught me

Claire Farrington shares some of the amazing things she’s learned since the birth of her son, Theo.

Raising a child with Down’s syndrome can be unpredictable but, above all, life-affirming says Claire Farrington. Two years ago, the 41-year-old and her partner, Andrew Papadimitriou, welcomed their son, Theo, into the world 11 weeks premature. Three weeks later, they discovered he had the genetic condition.

Here, the mother-of-one from London, who writes the Mum On a Different Path (mumonadifferentpath.wordpress.com) blog, shares some of things she’s learned over the past two years.

1. IT’S IMPORTANT TO 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 Down’s syndrome was a world far away from me, obscured and shrouded by out-of-date assumptions.

But when the future becomes totally unknown, just as it did when Theo was diagnosed, you fear it.

What really threw me at the beginning was not knowing what life could be like for my son.

Suddenly, I had so many questions about what I had blithely taken for granted. Would he walk, talk, be independent, get married, travel, have a job?

But why did I have to try and 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 past 24 months of being Theo’s mum have been the best and the most enriching of times.

Just as the future can be daunting due to unfamiliarity, the future can be incredible, for exactly the same reason.

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 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, health, habits 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.

He was the most sociable child in the nursery, but was that the Down’s syndrome? No, actually. It was Theo.

It’s really important to remember that the personality you see developing in front of your eyes is unique and 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, so I love a win in gross-motor skills.

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 and we were told to expect issues, but we’ve had none), 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 CAN INHERIT AN ARMOUR

After the tsunami of grief and fear, you emerge stronger, ready to fight your corner so the world sees your son or daughter as just as worthy as the next. 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. Never before did I feel so ready to speak up.

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 that 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. But I also found blogs-a-plenty, Instagram accounts in their thousands, videos, shared advice, a camaraderie and a virtual community in which we felt at home and supported.

In the beginning, you’ll probably be the only one in the hospital that day, or even month, 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 enormous comfort from all the future references you’ll see of families simply getting on with life. In the stark light of day, it really is okay.

6. YOUR CHILD WILL SHIFT PERCEPTIONS ALL BY THEMSELVES

I was always hyper-aware of the looks we’d get. Now, I’ve come to believe it’s 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 an even better place to live.

7. YOU’LL BE A DIFFERENT PERSON

Post-Theo, I have naturally re-evaluated everything and it’s completely reshaped me. Yes, 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 that’s insignificant drifts away. I suppose it’s a painful enlightenment at first, but what remains, after the backwaters of grief have subsided, is a startling clarity.

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