A Meath mum who sleeps on the floor with her son with special needs has said she tries not to be ‘doom and gloom’ for her kids.
Jen Parsons, her husband Glen and their two sons Ryan, 9, and Josh, 6, feature in this weekend’s DIY SOS.
Ryan has autism and his younger brother has Smith-Magennis Syndrome, a severe developmental disorder that means he is unable to walk or sit unaided, is non-verbal and is peg-fed.
Jen had lost three babies before Ryan was born and they were delighted when she fell pregnant with Josh.
“Up until about 26, 27 weeks, everything was fine and then Josh’s cord got restricted. So the way they explained to us was like pinching a hose.
“He was in the incubator and he had all these wires on him, he looked so helpless. It was so hard to see him like that.”
His condition means he can self-harm when he is frustrated and he finds it hard to sleep for a long time without choking, which means Jen has slept on a mattress on the floor with him for the past four years.
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While dealing with two children with special needs is hard enough, she also has her own medical condition.
Glen explained: “Jennifer has Cloves Syndrome and on both sides of her stomach there’s really large birthmarks. The birthmarks are covered in blood vessels. In the winter they get very painful and in the summer, they bleed internally and externally…
“She’s been in pain pretty much most of her life, definitely all her adult life anyway. And she just gets on with it.”
Because of Cloves, Jen has woken up ‘covered in blood’ where she has haemorrhaged throughout the night.
She said: “We do have all the stress and it’s so hard but I don’t want to bring them up with that. We try not to be doom and gloom about stuff and make everything as happy as possible for them.”
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For her husband, who left the Defence Forces after 21 years to look after his family, it is hard to see her in pain but looking after everyone else.
“She wakes up in pain, she goes to bed in pain. It’s hard to see. I know what she goes through.
“I worry more for her, rather than me. How is that going to affect her? Her mental health? Because she can’t do the same things that she used to do with the boys.”
‘I’M LUCKY TO HAVE THEM’
He added: “Everything worries me. I worry about Ryan growing up. If something happened to me and Jen and it’s just the boys, who is going to take care of the kid in the wheelchair who has additional needs? Who’s going to do the things that we do to keep them happy?”
But he said he is “lucky to have them.”
And for Jen, she also worries about the future as her condition means she will likely end up in a wheelchair down the line.
“When I let myself think about the future it scares me something terrible. I need to be here as long as possible for Josh so it scares me to think that anything might happen me or anything like that so I try not to think about it.”
BOYBAND STAR SAYS IT WAS ‘EMOTIONAL’ TO HELP OUT
Due to the need for specialist equipment for both Jen and Josh, as well as a sensory room for Ryan, the family applied to DIY SOS on RTE, which sees a team of volunteers give their home a complete makeover to suit their needs.
In this episode, even Boyzone star Keith Duffy lent a hand, after hearing their story.
His own daughter Mia has autism and he said it was “emotional and mindblowing” to be able to help out.
- Watch Jen and Glen’s house transformation on RTE One, tonight (Sunday) at 6.30pm.
