Emma & Isla

Emma’s story

Hi there, I’m Emma, mum of two, to older sister Maise, and our youngest, Isla. This year I’ve been chosen to lead The Down Syndrome Centre’s Mini Marathon Team because of my connection to the centre.

In her two years on this earth (nearing 3 I can’t believe it!), Isla has brought so much joy into our lives. More than you can ever imagine until you have children of your own and realise that they become your world. While pregnant with Isla, I was absolutely convinced she was going to be a boy because I was so sick for most of my pregnancy! We declined any tests during our pregnancy, so our diagnosis was postnatal.

At 30 weeks, we got a scare when doctors thought Isla would have to be delivered early. We were under review the next several weeks, until Isla was born. We went in for my 37 week scan, but never made it home that afternoon. Only a week later with a newborn! I was kept in the day of my scan, and Isla was born via C-Section the next day.

Everything happened so fast, and then, the delivery room went quiet. Isla was rushed to the neonatal intensive care unit after a quick hello. All I could think as she was wheeled out of the room was how like her sister Isla was. She was beautiful, and exactly like Maise. That’s when the doctor asked us if we noticed anything different about Isla. I had no idea what they were talking about. I couldn’t see anything other than my perfect little girl being held before me.

Minutes after her birth, the doctors explained that they saw some features that are consistent with children who have Down syndrome. They said they would run some tests, and that we’d hear back in 21 days. An ironic number, looking back at things now! A mix of emotions washed over us that day. We were so scared for our little girl. Not because the doctors thought she might have Down syndrome, but because of the uncertainty of her health. Isla spent 5 days in the NICU, but a few days felt like a lifetime for us being away from her. Time just slowed down as we waited to hold our little girl.

Isla was a few days old when I first got to hold her. I’ll never forget it- the first thought in my mind: “She’s perfect”. That thought though, was followed by fear, she was so fragile, little, and I was so very sad for her. We were told then that Isla had a hole in her heart, and that one day, sometime soon, she would need surgery. Isla’s journey was only just starting, but I knew she was perfect in every way, just as she was.

Throughout our postnatal diagnosis, we have continued to be supported by our amazing friends and families. We feel so lucky to have their support and positive presence in our lives. Our community gave us the strength to keep going when we needed it the most. Don’t get me wrong though, sharing the news wasn’t easy. Imagine explaining to people that are so full of joy and celebrating that your newborn baby was in the NICU, born at 37 weeks. We were all worried in those early days.

Having a newborn baby is challenging in its own wright, throw in medical complications and you reach a whole other level! After seeing the heart team, we went into absolute lockdown trying to keep germs out of our house. Between trying to get Isla to a surgery ready weight, to constant appointments and home visits, looking back it’s all a blur. Isla was only 3 months old when she had her first (and only thank goodness!) open heart surgery. She’s been a fighter from day one. We feel lucky that Isla was able to get the care and help she needed from that first day in the NICU, to the services we receive now.

Having Isla in our lives has brought us so many things- it’s hard to count! We’ve changed as a family for the better. Her smile lights up a room, and her determination and strength is a constant reminder that there are no pity parties to be had in our house! Going incognito anywhere now simply can’t happen, as Isla loves to wave and interact with everyone she sees. She makes friends wherever she goes, and she’s opened doors to other families who have become good friends.

Isla has taught me that I am stronger than I ever thought possible. She has taught me patience in a very special way. With that, Isla has also taught me that patience isn’t always easy. Down syndrome isn’t the same in every child. Each child is their own unique individual. In the beginning, you are given so much information about what Down syndrome looks like. Things that could happen, ways children will be. You spend time worrying and researching instead of being present to the amazing child who’s right in front of you. Yes, my child will have developmental delays, and some milestones are much harder to achieve, but the energy and effort our children put into reaching these milestones is hard earned and so well deserved. I’ve often questioned whether I’m doing enough, where I am enough, because some days are harder than others. So on the days that Isla reaches a milestone, it’s like we’ve won the lottery. We need to remember to enjoy it.

Isla first attended The Down Syndrome Centre when she was 5 weeks old. We needed to connect with people who knew the journey we were embarking on. We needed a community. We wanted our daughter to have the best chance at succeeding, so we brought her to DSC. Through The Down Syndrome Centre, Isla has had consistent Physiotherapy since she was 5 weeks old. We have gained so much from these sessions, and will always be grateful to Maeve and the staff at the centre for their input and the role they played in Isla’s development.

In addition to Physio, we’ve been attending Triona’s Tots for nearly 2 years at the centre. Isla gets to meet her friends every week, learning Lamh, colours, songs, and so much more. On top of all that, Isla has also just started SKIP-‘Special Kids Intervention Programme’ which will prepare Isla for school. We practically live at the centre! It’s hard to put into words what we have gained from the centre, so I’ll just say that we would have been lost as those early days without the support from DSC. Those early days especially can be overwhelming. The Down Syndrome Centre is a safe and caring environment- it’s a second home. A place where you are welcomed like a friend, and can put the kettle on and settle in for the day.

We have so many hopes for Isla in the future, as she is an incredible girl. Our biggest hope for Isla is that she has the opportunity to be the best version of herself that she can be. We hope that Isla is kind, and caring, and that she continues to make friends with her welcoming spirit.

This year, I’ve taken the plunge as a leader for the Down Syndrome Centre’s Mini Marathon Team. Join me in ‘Walking on the Wild Side’ and support The Down Syndrome Centre! We need your help to make a difference in the lives of all the children here at the centre.

For more information, and to join our team click here or contact Madeline at madeline@downsyndromecentre.ie Can’t wait to see you there!

If you would like to support Emma please click here

Listen to Emma’s interview on Spirit FM here

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