WHEN people get the good news of a confirmed and wanted pregnancy, they are typically planning a happy family life ahead.
Which is why, Louise Daly – a support worker with Down Syndrome Limerick and mother of a daughter living with the condition – says the services she and her colleagues provide are so important.
“When I was pregnant with Ameliya (7), I had it all laid out. She was to be my third and last child, we would have happy family holidays, travel, they would all grow up, and we could retire. I had this vision of perfection,” the Annacotty mother told the Limerick Post.
That fell apart when Louise and husband Shane were told first, at 34 weeks into the pregnancy, that their new daughter had a bowel problem and would be living with Down syndrome.
“I went into labour spontaneously and she was born at 36 weeks. She had to be taken into hospital immediately. My vision of those perfect moments was shattered. I didn’t get to hold her, I didn’t get those perfect memories. It wasn’t the perfect ending I had envisaged.
“I was all over the place. I was crying, I was happy, I was shocked, I didn’t know where I was from one minute to the next. I was terrified I couldn’t be the mother she needed. It was a long time before I realised that Ameliya is the perfect ending – the missing piece in the family jigsaw.”
It took time and a lot of support, much of which came from the Down Syndrome Limerick group, for Louise to come to terms with the reality of Ameliya’s situation.
“After three years I felt I was in a good place to be able to volunteer to support other families and I did the training.
“We’re not counsellors, we’re supporters. When your child is born, while the doctors do all they can in their field, the first things you hear are all negative – that she may never speak, she may never walk. I know what parents are going through, so the support I offer comes from experience, not from text books,” said Louise.
As well as advising new parents with children living with Down syndrome on their entitlements and the practical supports available to them, Louise says her role is “to listen without judgement to whatever they want to say”.
“If someone tells me they’ve been having a very rough time, I can tell them from experience, that it’s a s–t day but it’s not a s–t life. I tell them it’s important to be kind to themselves, to get rest, and tomorrow will be better. I can say that. I’ve been there.”
The Down Syndrome Limerick centre in Castletroy is the only one in the country that can offer its 200 members so many services in one place, Louise explains.
As well as speech and language therapy, occupational and physiotherapy, the centre runs social and networking groups, organises outings and activities, and offers adult education classes.
The centre pays for half all the services provided and parents pay the other half, but if families can’t afford that, “we won’t see any child left behind,” said Louise.
Ameliya is now a hugely energetic child, who goes to school and loves singing, dancing, drama, and sports.
She and her family will be on hand to welcome the fundraising Tour de Munster into Limerick and King John’s Castle on August 10, where members and supporters will be raising money by abseiling down the walls of the castle.
Money raised will go to help Down Syndrome Ireland, as well as the local Limerick branch, to continue providing the full time services of the professionals they employ and the supports and activities which serve as vital resources to families.
