We have not left our house since March in order to shield our son

Chanochi's family (Credit: Dina Erlic Raw-Focus Photography)
Chanochi's family (Credit: Dina Erlic Raw-Focus Photography)

We have not left our home in Edgware since March when the Covid-19 lockdown started. Intent on shielding our son, Chanochi, ten, a pupil at Kisharon School, the furthest we – a family of six have ventured is to the end of our drive. As a working mother of four children, life in lock-down has been a juggling act.

Our son Chanochi has the rare genetic disorder Familial Dysautonomia. Having a child with a disability has helped us get accustomed to lock-down quicker than most. We are used to living with unpredictability. Other people have things mapped out. It’s been a curveball.

Chanochi is sociable and independent. He’s used to visiting our neighbours on his own and he has 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 lock-down easing with the announcement that those shielding can go out, if they’re comfortable doing so, has only served to make life harder. 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?

Our family faced that agonising decision when school reopened and our 5-year-old 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 our 14 year old twins. Currently their school are scheduling normal daily lessons on Zoom.

Chanochi family (Credit: Dina Erlic Raw-Focus Photography)

Good friends have bolstered our resilience. Friends have been a life saver for us all. They come to the end of the drive. We chat and laugh together which helps relieve 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.

My outlook is positive, I am pragmatic together with my husband and children about life at home and we feel luckier than many. We are grateful to have a house with a garden so the children can have a good run around every day which helps support their well-being and at this time is vitally important.

Lock-down is certainly a challenge but I believe staying positive will help us get through this. When we see Chanochi, Eli and twins Sari and Meital smile it makes all the effort worth it.


About the Author
Jane Pearl is a midwife at Homerton Hospital in Hackney and a mother to her immediate family of six. Jane and her husband have four children, Chanochi, twins Sari and Meital and Eli. Chanochi has the rare genetic disorder Familial Dysautonomia and the Pearl family became part of the Kisharon family since being supported by the service.