Jane is pragmatic about life at home with Chanochi and his siblings, twins Sari and Meital, 14, and the youngest, Eli, five. “A lot of watching programmes goes on. If they’re not watching then I have to be with them so it’s a juggling act. I work two days a week so on those days they have to do their own thing. But being in the house, I do know what is going on.”
Chanochi has the rare genetic disorder Familial Dysautonomia, and Jane maintains that having a child with a disability has helped them get accustomed to lockdown quicker than most. “We are used to living with unpredictability. Other people have things mapped out. It’s been a curveball.”
It took Sainsbury’s a few weeks to recognise that Jane, her solicitor husband Ian and their children were a vulnerable family. But since then groceries have arrived regularly on the doorstep and close friends take care of their needs from kosher shops.
Jane, a midwife at Homerton Hospital in Hackney who has been handling patient appointments on the telephone, said: “Chanochi is sociable and independent. He’s used to visiting our neighbours on his own and he struggled without that. He misses the driver of the school bus and the person who escorts him off it, and so we message them. He sees school friends and teachers on Kisharon School’s Zoom sessions but especially missed one close friend who is older and in another class. We arranged for him to come to the end of our drive and Chanochi sat in the porch. They spoke for 20 minutes, sharing news. There was such joy!”
Last week’s lockdown easing with the announcement that those shielding can go out, if they’re comfortable doing so, has only served to make life harder. Jane explained: “It’s the uncertainty of knowing now what’s safe for the vulnerable. Infections might go up, there could be a second wave. How do we know whether to go back to school?”
The Pearls faced that agonising decision when Beit Shvidler Primary School reopened and Eli had the chance to take his seat back in the classroom.
“Eli is a reluctant learner so I didn’t want to hold him back but we decided not to send him.” That tricky issue has not yet surfaced for their twins. Hasmonean High School for Girls is scheduling normal daily lessons on Zoom.
Good friends have bolstered the Pearls’ resilience. “Friends have been a life saver for us all. They come to the end of the drive. We chat together, laugh together and it relieves any tension.
“Phone calls are lovely, but seeing people in front of you is different. We are lucky this is summer. Seeing people just wouldn’t have been possible in the cold and wet.”
Jane admitted the family is luckier than many. “At least we have a house and a garden so the children can have a good run around every day.”
Written by: Kisharon