Saturday 10 December 2016

'I feel guilty for ever shedding a single tear over her diagnosis'

Irish mum Joann O'Callaghan had no idea what to expect when she learnt her little girl had Down Syndrome

Published 12/07/2016 | 02:30

Joann O'Callaghan and her daughter Ellie Talbot (2) from Clondalkin.
Joann O'Callaghan and her daughter Ellie Talbot (2) from Clondalkin.

I remember it like it was just yesterday - the moment I was told that my baby girl Ellie had Down Syndrome. It wasn't just because I felt the news was delivered in the wrong way - it was so abrupt and sudden - but today I feel guilty for ever shedding a single tear over her diagnosis.

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I loved Ellie from the second I saw her. When I was pregnant, we had no idea that there were any problems, but just moments after she was born, it became clear that something wasn't right.

Doctors took her away for a physical examination and although we had to wait for the blood test results to confirm it, they could tell she had Down Syndrome.

But it didn't matter - she was my beautiful little girl and nothing was ever going to change that fact.

Read more: 'Down Syndrome is only a small part of my beautiful daughter Lilah'

Of course, when the medics told us about their suspicions, it did bring a whirlwind of other worries and fears.

Ellie is one of the 21 faces in the Down Syndrome awareness campaign.
Ellie is one of the 21 faces in the Down Syndrome awareness campaign.

Almost immediately, the endless round of medical checks began and each test brought with it an overwhelming feeling of stress.

I remember the happiness when the results were all clear and then the panic that set in when the doctors had concerns over others.

Once we were discharged from the maternity hospital, the appointments just kept coming.

Read more: 'I felt my life close in around me': Irish mum's honest account on having a child with Down Syndrome

It felt as though we were back in Our Lady's Children's Hospital in Crumlin every second week. There was no time to actually enjoy the new baby girl we had just brought into the world and I get sad when I think this is a time that I can never get back with Ellie.

To be honest, I knew nothing about Down Syndrome before I had Ellie. I knew that the people who had it had similar characteristics, and in my ignorance that was all I knew.

It was explained to me that it was an intellectual disability and that Ellie would find it that bit harder to reach her milestones.

I was told that early intervention was extremely important and that this would mean recurring appointments with physiotherapists, speech therapists, occupational therapists and any other additional services that they felt Ellie needed.

Ellie has been exceptionally lucky as she is in the care of Stewarts, an early intervention service in Lucan, Co Dublin, which she's attended since she was eight months old.

Read more: Irish teen with rare syndrome that leaves her unable to make facial expressions is helping other sufferers

So in our case, access to early intervention services has been excellent. For many others, it's not that simple.

I speak to other parents who have no services at all, which is absolutely disgraceful, especially when we are all told how important it is.

That's why the work of the Down Syndrome Centre is a blessing for all of us. The centre offers all of the services that are required so that our children can reach their full potential.

The first year of Ellie's life was a complete blur. When she was nine months old, we noticed she suddenly stopped smiling and would give these subtle fright-like movements.

Like any new parents, my partner Darren and I were always extremely cautious, so we brought her straight to A&E.

Tests showed that she had developed a sever form of epilepsy in babies known as infantile spasms.

Treatment had to start immediately as these spasms could cause additional developmental delays. Ellie had to be admitted to Crumlin and stayed there for three weeks, where she was treated with steroid injections every other day.

It was a really difficult time for the whole family, but after a tough few months Ellie started to recover and really began to thrive.

With the first year behind us, slowly but surely, things began to calm down. Our routine with appointments just became the norm and we began to enjoy Ellie for the fabulous little girl that she is.

Ellie's now two, and yes, we spend additional time working on building her muscle tone so that one day, she will take off walking. And we spend lots of extra time on flashcards and speech aids so that some day she will communicate with us to the best of her ability.

It's difficult sometimes because we know that she's depending on us to provide all of that extra help that she needs, and then the feeling of guilt sets in when you might let sometimes slip where you don't work on the areas she needs extra help. When I look at Ellie and see how hard she works and never complains, I could just burst with pride. Even at two years old, she could teach us all a thing or two. Her attitude is basically just to get on with it.

Ellie recently started to pull herself to stand - and it felt as though I had just won the EuroMillions. And every word that she attempts merits a call to everyone in the family, as everyone must know immediately what just happened so they can celebrate with us!

I have absolutely no doubt that Ellie will reach her full potential and grow into the most amazing person. And in lots of ways, she is just like every other two-year-old.

She'll sit for hours watching all her favourite shows, especially if they involve Disney princesses and she has her tantrums when she doesn't get her own way - and even more so since her little sister Katie arrived.

It's fantastic to see them together - they're only 15 months apart and already they're the best of friends. Ellie really thrives when she is around other children - she loves to be involved and even though she is not walking yet, she always manages to still be in the centre of things.

In September, she'll start mainstream playschool and I've no doubt she'll settle there and thrive. But when I think of what might lie ahead, as she gets older, I begin to worry a little.

I worry she may not be fully accepted into the society we live in today. While I agree that people's perceptions have changed a lot, there are still some outdated attitudes out there.

We need to educate people so they know that those with the Down Syndrome are no different to you and I. We're all unique in our own way. They just happen to have one extra chromosome that causes some recognisable characteristics and they find it that bit harder to reach their milestones.

That's why we were delighted when Down Syndrome Centre asked us if we would take part in the 21 Faces Campaign, which aims to change public perceptions of Down Syndrome.

Ellie is one of the 21 children featuring in a poster campaign currently running on Dublin Bus and all around the city and the reaction has been fantastic so far.

Together we can raise awareness and educate people so that all of our children can grow up in a society where people living with Down Syndrome are not excluded. We need to chance the misconceptions out there, one step at a time.

For more information visit: downsyndromecentre.ie

Irish Independent

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