Sunday 26 March 2017

‘I grieve for the child she could have been’ – Mum of daughter with severe disability says she mourns her future

Johanne Powell Photo: RTÉ
Johanne Powell Photo: RTÉ
Catherine Devine

Catherine Devine

The mum of a severely disabled woman has spoken out about life as a carer saying she wishes she could meet “the child that she could have been”.

Johanne Powell from Co Wexford is a full-time carer for her 32-year-old daughter Siobhan.

Siobhan has the rare genetic disorder Ring Chomosome 8, which means she can’t speak or walk and requires 24-hour care.

Speaking to Ryan Tubridy on RTÉ’s Late Late Show, Johanne said she mourns the life her daughter could have had, and the grandchildren she would love to have met.

“The things I’m saying now, how I’m bold, I’m depressed, I want more, a life for myself – people are afraid of being judged,” she said.

Johanne said during pregnancy she was filled with optimistic thoughts for the future of her unborn child.

“You think they’re going to be Olympic swimmers with university degrees and everything you can have and you know, I got a daughter that can’t do anything,” she said.

“I will never have grandchildren ever, I come from a big family, I’d love to have more children, but we couldn’t have more, it just didn’t happen.

“I would love to have plenty of grandchildren to spoil and do things for, and at the same time you grieve also for the child that you thought you were going to have.”

The family are looking to get long-term residential placement for but are faced with long waiting lists in Co Wexford.

“It’s not that you want away, because you don’t,” she said.

“You love her, but at the same time there’s a child there that you thought you were going to have and that you never met. I would love to meet the child that Siobhan could have been if she didn’t have the chromosome disorder.

“I do think about that child, yes I do,” she added.

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