“You’ve no time to think about yourself, because all my thoughts just go into Jack and his care.” Jack & Jill Mum Nina.
On Monday June 16th, Ryan Tubridy read an email from a carer called Nina, who was writing to him from her hospital bed. Her email detailed how her life had changed since lockdown started and schools closed on 12 March last. In this email she described her life in lockdown and spoke of the physical and emotional toll the last few months have had on her body. Listen here
After she was discharged from Hospital, the show contacted Nina to come on air to talk about how she was doing.
Ryan asked Nina if her four year old son has ever said a single word to her. The answer: no. “Jack suffers from a rare genetic condition called Oberklaid-Danks Syndrome. He has a severe intellectual disability and has fusion in bones in both his arms.”
So what is a typical day like for Nina and Jack? “He gets food at 7am and meds at 8am, followed by a breakfast feed at 9.30. Then it’s nursery rhymes on the iPad for an hour. That’s followed by a Zoom call with Jack’s speech and language therapist, which has brought Jack on and kept Nina sane, as it gave her something to focus on. Then it’s out for a morning walk, Jack using his walking frame, which Nina says he’s getting better on. Back home for water – through his tube, as he doesn’t take liquids orally either – and plug him in for lunch, followed some play and by another walk, more meds and afternoon playtime. Jack’s back at the table for a tube feed at 5.30, after further water flushes. Then it’s The Night Garden and the night-time routine starts: pyjamas, wash, more meds and into bed. Nina grabs something to eat then before plugging Jack back in for another feed at 10pm, before she goes to bed.
As you can see, Nina doesn’t have the opportunity in her day to relax with a YouTube yoga class or to take up Pilates. What has become something like normal for a lot of people during lockdown isn’t ever an option for many carers. Nina credited the Jack & Jill Foundation with giving her some respite during the last four and a half years:
“If it wasn’t for them, I would have fallen over a long time ago.”
Aside from her time in Holles Street when Jack was born, Nina had never been in hospital. Last week, that changed when she did, in fact, fall over. To hear the full compelling conversation between Ryan and Nina, go here.
The reaction was incredible. So much so that another Jack & Jill Mum from Cork, Katie Healy Nolan joined Ryan the following day in solidarity with Nina. Listen to her talk about her beautiful daughter Penelope here.