What it's like.... to have a daughter with Down syndrome
Neasa Ni Argadain is mum to three-year-old Sadhbh who is one of the little service users in The Down Syndrome Centre.
This is her inspiring story, in her own words:
“Sadhbh was born late on a Thursday night (after a labour that started on Tuesday!), but in the end, she arrived in a bit of a rush, and this little soft pink-faced girl was handed up to me. She was just starting to open her eyes and squint, and I can honestly say that I swooned, she was so beautiful and so pink!
My other girls had been grey when they were born, but Sadhbh was just gently breathing away, no difficulties, so content. Her little squashy face had the physical signs of Down syndrome, so I saw it straight away, but there was no shock or hesitation – I just recognised this was her, our baby and she was here, so nothing else mattered (I had miscarried a baby before Sadhbh, so she was a very special delivery).
We had been told early in the pregnancy that there was a ‘problem’ and initially it looked like a very serious problem, but at about 14 weeks we were told no, it was just a higher risk of Down syndrome. I remember being furious and saying "All this worry, just for Down syndrome?" And feeling like I had won the lotto – because I felt we could definitely cope with this – it really wasn't a big deal. But then, I had the benefit of already having a nephew with Down syndrome, and I had a little boy in my class who had it too, so it wasn't at all a scary thing to me.
As time went on, the medics saw no further signs of Down syndrome on any of my numerous scans, they were convinced that it wouldn't appear, but I just knew all along that this would be part of Sadhbh's story. So I wasn't shocked when she was born, just relieved and very very happy.
I felt because she was so pink that she was healthy although later a heart problem was identified. I smiled, beamed even, every time I looked at her, I still do! She is just so beautiful.
My hopes for Sadhdbh
I don't see Down syndrome as a disability, though I know some children have a lot of related health issues. In fact, I recently found myself telling someone that "I have a child with the gift of Down Syndrome." I know that might be hard for some people to hear or understand, but it's the truth. Sadhbh has been nothing but a pure gift to all our family – even her cousins are growing in new ways because of her.
We were told all the negatives; the delays when it comes to speech, crawling, walking and other milestones, the possibility of sleep apnea, breathing difficulties, thyroid issues... honestly it's all blah blah now... she will get there in her own time! And she has capacities for love and affection and empathy and fun that far outweigh ours, so in real life, really which of us has the disability?
My hopes for Sadhbh are the same as those for my two other daughters; that she will grow up healthy and happy and feel she has reached her potential and found her place in the world. I don't worry about their future too much as I don't know what lies ahead for any of my children. With each of them, we will meet hurdles and obstacles along the way, and we will do our best to climb over them or hoist them over with us.
That's where The Down Syndrome Centre comes in. There, we have found a community of support for Sadhbh and us as parents. We all share a view that each of our little people have brightened our lives, are a gift to us and to the world and deserve the best of support to realise their potential. Potential which is there, but which might need a slightly different key to unlock it.
Sadhbh loved coming to the centre’s parent and baby class, 'Team 21 Tots' with Triona (she took her first steps on Triona's birthday, which I’m convinced was a gesture of gratitude). Now she comes to 'SKIP' class with Dani and her friends; Amelia, Alex, Archie, and Kevin every Friday. She loves it and is thriving on it; singing her songs, practising her chat and just having fun with her little peers.
Sadhbh will probably go to mainstream school with her sisters, but I think it's important that she also have a peer group her own age with Down syndrome, so that whenever she does notice that difference, she won't feel alone or isolated.
I like to think we will always be there to support her but as she gets older, we may not understand exactly her own concerns or worries. Through The Down Syndrome Centre, a network is being established which will grow to meet the needs, socially or educational of our children as they develop.
The Mini Marathon
I started walking the mini marathon in 2012 when I had no idea how long 10 km truly was! It took me almost two and a half hours to finish (this is mostly due to the fact that a toilet stop in the Merrion Centre turned into into a quick look around the shops!).
Now my college friends and I have a system – I walk it with two of the girls, two others jog it, and one is an elite runner who has the drinks lined up for us when we get back to base! It's now an annual event for us, we use it as our unofficial reunion, and we always take the next day off, go out for a nice dinner and catch up and stay over in the 'big smoke.' It's a great event, a real highlight of the year, especially if the sun shines.
If you haven't tried it, this is the year to give it a go. There is a great buzz as everyone gathers and it really is just a long walk with plenty time to chat and catch up as you walk around, so grab a few old friends and drag them with you. It doesn't have to be a fitness event; it really can be a social occasion, (and you'll really feel like you deserve your G&T afterward).
If you're considering supporting The Down Syndrome Centre, I promise the smiles will cheer you up, or better still, come and visit us, and meet some of the gorgeous little stars who are brightening our world. They could brighten yours too.
The Down Syndrome Centre opened its doors in October 2014 and welcomes over 200 children and their families per week. The team there provide vital intervention services such as Speech and Language Therapy, Occupational Therapy, Physiotherapy, Counselling services, Baby Massage and many others, all with the aim of giving children with Down syndrome the most fulfilling and independent lives possible. To support them or join the Mini Marathon team visit downsyndromecentre.ie