'Things are better than OK... with Liam the joy is multiplied'
Liam Caserio's parents speak about the challenges they face and the support available for Down Syndrome
When Meadhbh and Paulo Caseiro welcomed their first child into the world, Liam, last year, they had no idea their baby boy had Down Syndrome.
"We didn't know. The pregnancy was perfect and it went really well. Liam arrived two weeks early and even having him, the birth was really quick. Within an hour of having him, we knew he had Down Syndrome," says Meadhbh.
Her husband Paulo says: "All of the scans were fine. There was no indicator that there would be something different about Liam."
Within minutes, they both knew something was wrong. "Both of us knew before we were told," says Meadhbh. "The midwife said he was floppy and that he had low muscle tone and 'mosaic' features. I didn't know what that was. When the doctor was called, I asked was that normal and she told us she had some concerns about Down Syndrome. At that point both of us realised.
"We had gone from the biggest high of having our first baby to a low," says Paulo. But very quickly they moved to accepting the news and trying to think about it in a positive way. "To be honest, almost immediately we just accepted it," says Meadhbh. "We said, this is the way it is. Let's be positive and do the most we can with Liam and for Liam."
They were were faced with the task of coping with unexpected news, and then tell friends and family in a very short period of time.
"When we were telling our friends and family, we told them Liam has Down Syndrome and everything is okay. We were positive. I told one person from a group of friends and asked them to tell their friends."
The first thing the hospital had to establish was if Liam had any heart problems as a high percentage of babies born with Down Syndrome have heart problems.
"He was three days old when he had his ECO done and there was a small hole and open duct in his heart. The doctors were not overly concerned about it, it just needed monitoring, and last December he was discharged from the cardiologist as it had healed itself."
One thing that both Meadhbh and Paulo found difficult at the start was trying to stop projecting into the future. "There were dark days in the beginning, of course, but you have the baby there so you can't stay too long thinking about it. Once you start looking at things day-to-day it helps."
Meadhbh says: "Straight away we were thinking into the future and we just had to stop worrying about that."
While each experience is individual, Meadhbh and Paulo got in touch with the Down Syndrome Centre in Dublin to ask for advice.
"Everyone copes in different ways. The way I coped was to reach out for support. Right from the word go, the Down Syndrome Centre have been a support, sending emails, links to blogs that might help, the advisory panel on the website for asking questions . . . I've lots of friends now with Down Syndrome kids since I've had Liam," says Meadhbh.
The centre were starting a campaign to fundraise last summer and Liam and Paulo featured in their calendar. Then, on St Patrick's Day this year, a picture of Liam in festive green sequins went viral. "They've always been there," says Meadhbh. "We've been to lots of seminars they've put on about financial wellbeing, setting up trust funds for the future, things you just wouldn't know yourself, behavioural seminars. There's a full-time centre opening in July and August that will offer speech and language therapy and occupational therapy. Liam was really born at the right time with this centre opening.
"Another thing we do is go to a playgroup for children with Down Syndrome and it really benefits the children but it benefits the parents just as much.
"You can ask advice, hear about other people's experience, pick up tips . . . that's how I coped. Other people in the beginning want to shut their doors before they deal with it."
Paulo says: "If we didn't have the centre, all we have otherwise was the internet, which is full of stuff you don't want to hear or see. Those groups get parents together."
This month, the Down Syndrome Centre will raise funds through the Buy MyDress campaign, supported by Kellogg's Special K. The events will take place in the RDS in Dublin, as well as Cork, Galway, Limerick, Athlone, Wexford and Waterford on Sunday, May 25. Average prices range from €10 - €50 and dresses on sale include donations from Imelda May, Pixie Lott and Ellie Goulding, amongst others.
Liam is one now and that year has flown by. "He's a gorgeous boy, very happy, with a fabulous smile, and everybody who meets him loves him.
"He loves going swimming, going to his playgroup, he loves music."
Paulo says, for parents who are expecting a Down Syndrome child, it is a big shock. "It will change your life in a way you weren't expecting, but once you get past that shock it's just like any other child who needs a bit of extra care.
"Once you start thinking day by day it's better. It's hard not to think about the future but the support out there now is great.
"It's not like 30 years ago where they were put into institutions. They can reach their full potential now."
When asked how she feels now, compared to this time last year, Meadhbh says one thing stands out for her. "There was a line on a blog that said everyone tells you things are going to be okay, but they're not – they're going to be more than okay and it's true. If I was to meet anyone that's what I'd say."
In the beginning there's an awful lot of days with tears of sadness, worry, and guilt. Paulo says, "You blame yourself for something that's not your fault."
"Those days become fewer and fewer," says Meadhbh, "and there are more days with laughter. Now there's so much celebration about anything Liam does. I remember the first time he pulled his sock off or rolled over, we were dancing.
"The joy is just multiplied. I remember the day when I looked at Liam and didn't see the Down Syndrome any more. I just saw Liam, my beautiful boy. Liam was about three months old at the time. Since then I don't see the Down Syndrome at all."
Buy My Dress events will take place around the country from 11am to 5pm on Sunday May 25, 2014. Visit www.buymydress.ie to find the event closest to you.
Health & Living
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