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A DELICATE BALANCE

One family balances returning to work and keeping their child safe.

BY TEDDY KATZ

Ivona and Iwan access services at Holland Bloorview for their five-year old son Noah, who lives with a spinal cord injury as a result of being diagnosed with cancer when he was less than three months old. Noah uses a wheelchair and other mobility supports (e.g. stander). He is considered high-risk when it comes to the transmission of COVID-19.

The family of three had just returned from a vacation in the Dominican Republic when the pandemic was declared and naturally, were quite anxious about the need to be extra careful to prevent exposure to the virus. Iwan and Ivana recognize that COVID isn’t going away anytime soon and feel that they know their child and situation better than anyone.

Still, as parents, the couple has found it very challenging—trying to balance Noah’s safety with his need for physical and emotional support. Here are some of the things that Ivona and Iwan have been doing during the pandemic:

  • They have arranged for groceries to be delivered for months to avoid contact with others, and they have been diligent with disinfecting all purchased items that come into the house.
  • Until recently, they decided against bringing in their regular personal support worker to protect Noah.
  • Both parents are working from home.
  • As restrictions began to loosen, they have started to invite some family members over while physically distancing and using masks in their backyard.
  • The couple are taking calculated risks now e.g. allowing a personal support worker to visit their home twice a week for 3 hrs/day, attending private physiotherapy sessions to give Noah the play time and therapy he needs.
  • They’re now creating their social circles as per government guidelines.
  • Ivona has started meeting with friends but is still physically distancing.
  • Both parents are experiencing feelings of guilt as they can’t always provide the amount of attention and support that their son needs at home.
  • Noah would like someone to play with more and doesn’t always get the immediate help he needs to get from one place to another, so they feel like some of his independence has been stripped.
  • Noah hasn’t been able to get botox treatments or ankle-foot orthotics as they were considered elective procedures—even though both parents feel they are vital.

Like many Canadian families, Ivona and Iwan are concerned that families like theirs are at risk of getting left behind during COVID-19. The limited support they get for Noah has been disrupted as regular programs and camps and other services are cancelled and they’re worried about their son’s quality of life moving forward.

Teddy Katz was a CBC sports journalist for 20 years, and chief spokesperson and director of media relations for the Toronto 2015 Pan and Parapan American Games. More recently, Teddy helped run the press office for the International Paralympic Committee in Rio and will be at the Tokyo 2021 Paralympic Games.

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