‘Our son Tom’s the best thing in our lives... and this is just the beginning’
For World Down Syndrome Day on Sunday, Claire O’boyle talks to two mums who say they’ve found nothing but joy in their children
‘Our outlook was bleak but i now know better’
UNTIL just over a year ago, mum Sara McNeill and her husband Peter had never known anyone with Down syndrome.
So when medics said they thought their baby son Tom might have the condition just moments after he was born, Sara, from Ahoghill, Co Antrim, admits it came as a shock.
“My entire pregnancy had been really straightforward,” recalls Sara (28). “But towards the end they spotted there wasn’t much fluid left around the baby and I was taken in for a C-section. Even that went fine, and as soon as he was born I had that big rush of feelings mummies talk about and I burst into tears. I was in love with him right then.”
But when a doctor told the new parents less than an hour after little Tom was born in February last year that he might have Down syndrome, Sara recalls how the atmosphere changed.
“I had Tom in my arms when she said it,” says Sara. “It’s hard to explain, but it was as if I became a bit numb because I didn’t know what it meant. It felt like all of a sudden he wasn’t the baby I thought I was going to have.”
And while the tot was taken away for tests, Sara and Peter were left staring at one another in their hospital room, not sure what was coming next.
“Tom was born on a Friday and it wasn’t until the Tuesday that we had confirmation,” recalls dentist Sara. “By that time we’d got our heads around the situation a bit. But up until he was born, right until we literally had our baby in our arms, Peter and I knew nothing about Down syndrome. I immediately jumped to all the things my little boy might not be able to do.”
Which is precisely why Sara, who now runs popular page @twentyonetom on social media, highlighting the many beautiful moments she and Peter share with their little boy, wants to showcase just how wonderful life can be with a child with Down syndrome.
“I was completely wrong,” she says. “Tom has been an amazing baby. He’s the absolutely best craic ever. What we lacked at the beginning was knowledge about the real, lived experience of Down syndrome — we just had the medical jargon on a leaflet.”
The turning point for Sara, she says, was seeking out other families online.
“That’s when it all changed,” she says. “I found so many uplifting stories of families absolutely thriving with their little ones with Down syndrome. Best of all, they seemed genuinely happy.
“The only real challenge for us was the uncertainty at the start. Since then, since we’ve realised there’s nothing to be afraid of, our little boy makes us laugh out loud every day.
“He has a hole in his heart, but so far it’s causing no issues and if he needs to be treated for that later on, we’ll deal with it.
“The reality is my tyres hardly touch the tarmac on the way home from work because I can’t wait to see him, and through the power of social media, Tom brings a smile to thousands of people when I post a picture of his gorgeous wee face. He is the best thing in our lives — and this is just the beginning.”
Looking back to her experience last year, Sara says she hopes her message can reassure other parents whose children are born with the condition that there’s lots to look forward to.
“I would really urge any parent faced with a surprise diagnosis like we were, don’t be blinded by poor, outdated preconceptions of what Down syndrome is,” she says. “I thought our outlook was bleak right at the beginning, but now I know better. And because I do, I’m going to shout about how amazing our boy is — that is until he can do it himself! We are so, so happy, and you could be too.”
“Our life with Matilda in it couldn’t be lovelier”
Linzi Graham (30) became mum to adorable daughter Matilda Patterson in July 2019.
Already mum to daughter Morgan, who’s now 14, and 13-year-old son Corey, finding out at 18 weeks pregnant that her third child would be born with Down syndrome was news she didn’t feel ready for.
“I could talk all day about how we felt when we found out,” says Linzi, from Belfast. “Both me and my partner, Matilda’s daddy Keith, were extremely fearful about the condition because we’d never had any experience with additional needs.
“It was a whole new thing for us. But now, with Matilda turning two this summer, I can say for sure it isn’t at all how we imagined. We’re really happy and Matilda is thriving.”
And while Linzi says Matilda is a little behind developmentally, she’s making progress.
“That’s to be expected,” says Linzi. “Especially as she spent almost two months at the start of her life in hospital. The way I look at it, we take the scenic route with Matilda. It’s slower-paced, but it’s beautiful nonetheless, and we don’t get caught up in milestones. We know she’s happy and well and those milestones will be reached in her own time.
“She’s up walking along the furniture, she’s standing up and sitting down, crawling around the house and picking things up left, right and centre. She’s really coming on. Keith and I are doing a course in Makaton [language programme] too, which is brilliant, and should really help with her communication.”
And with World Down Syndrome Day coming up, Linzi says she’ll take any chance she can to explain why there’s nothing to fear from living with the condition.
“If you’ve not encountered it before it can feel daunting,” she says. “And I honestly don’t think there was all that much positive stuff out there in the past, but that’s really changing.
“Our life with Matilda in it couldn’t be lovelier.
“She’s been amazing through these uncertain times, especially after a family tragedy last year when we lost Keith’s oldest daughter Emily who was just
‘We’ve learned there’s nothing to be afraid of... our son makes us laugh out loud every day’ Sara Mcneill
‘Matilda has inspired us in so many ways’
three when she passed away with a heart condition. There’s nothing out of the ordinary in how we live, and while some of her activities have been cancelled over the last year because of Covid, that’s the same for everyone and she’s still getting therapies remotely.”
As well as getting support from national organisations like Positive About Down syndrome, Linzi says the family’s local group has been a huge help too.
“We’re so grateful to Families With Ups and Downs in Belfast, because they’ve been so supportive since Matilda was born,” she says. “They’re actually funding our Makaton course and their help has been phenomenal.
“Having Matilda has been the start of a brand new world for us and she’s inspired me.
“I’ve recently decided to take the plunge and start my own business with an online baby boutique, all inspired by the love of baby fashion I’ve learned along with Matilda.
“As well as that we’ve got our little blog on Instagram, @mighty.matilda, and I hope it and anything I’m ever able to say out in the world will help other families facing this unexpected journey and shine some honest positivity on a condition that’s still so misunderstood.”