The diagnosis hit us hard. The huge challenges that lay ahead for Oisin, and our family, were terrifying.
When we planned to have a baby, we expected a crawling, walking, talking child like everyone else. Then we were told that’s not going to happen, your baby isn’t normal. I’ll be honest - it was devastating. Some people say it’s like grieving.
My pregnancy was brilliant. My scans and screens were all normal. Then the day Oisin was born they noticed he had some different features. His jaw was very far back, he had clenched hands and one of his feet was bent right back.
The initial diagnosis was terrifying for us.
They told us it was Edward’s syndrome and that we should say goodbye to our son and call the priest. After hearing that, we didn’t care what the final diagnosis was, as long as we got to keep our baby, as long as it wasn’t fatal.
Our son Oisin is five now. He has a learning disability and a syndrome so rare that it has no name. I had to let go of my plans for my son, we had to make new plans.
Oisin is a very special boy with special needs and we want him to have the same opportunities as every other child.
We found out quickly that there is no childcare for children like Oisin in Belfast. Crèches and child minders are reluctant to look after him. There is also a lack of staff, facilities and knowledge.
For us, Mencap’s Segal House Nursery has been a godsend. I really don’t know how we would have managed without it. The type of childcare Oisin gets there just isn’t available for children like him elsewhere.
He has physio, speech and language workers and the play environment is so wonderful. He can play like all the other children now. Without this support I wouldn’t be able to work and we wouldn’t be able to cope with the stigma we unfortunately face as a family.
It was so difficult at the beginning but we are such a happy family now. We go on family trips, we do everything any other family might do and I don’t feel sorry for us at all. We are lucky and Oisin is just happy as Larry, so we are too.
I’ll always remember my mum saying to me:
You know, it’s hard today but tomorrow you’re going to get on with this and this kid will give you more than you could ever imagine.
She was right.
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By leaving a gift to Mencap in your Will, you can make a real and lasting difference for people like Oisin and their families.
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