The Casten Family Prepares for a Different Kind of Holiday Season

This time of year has always been a favorite of my three children. Ava (13), Henry (12), and Ella (10) enjoy the changing leaves and the warm fall days followed by chilly nights. They delight in leaf piles and in wearing sweatpants and sweaters to keep warm. They relish the fires in the fireplace and the household decorations that welcome the season.

Ella is our youngest, and she has spinal muscular atrophy (SMA) type 2. Despite her illness, she enjoys the season as much as the next person. She drives her wheelchair through the leaves as the wind whips her hair. She loves wearing hoodies and chasing the dogs outside.

Halloween is the beginning of the holiday season for us. The house gets decorated for the occasion with scented candles lit throughout. The kids look forward to trick-or-treating on Halloween and derive pleasure from dressing up for the day. 

This year, however, has been quite different from years past. With COVID-19 on the rise again in our county, we are once again confined to our house. We have two people in our home who are immunocompromised. Lindsay, Ella’s mom, fought an infection in her foot for four years and her body was unable to win the battle. The result was a partial leg amputation below the knee. Because her body couldn’t fight off the infection, her doctors told her she is immunocompromised and must do all it takes not to get COVID-19. Ella is also compromised due to SMA, which negatively affects the respiratory system. If she were to get COVID-19, it could be fatal for her.

This year, Halloween was different. We only put up a few decorations around the house. We’ve been so busy with online learning and working through the difficulties of being stranded in our own house. We decided the kids would not go trick-or-treating this year. We just couldn’t justify the risk of COVID-19 spreading to our family. 

Oct. 31 rolled around and we decided to have a special dinner. I made mummy pizzas and we sat and enjoyed the festive food. After dinner, we filled a bowl with chocolate and shared the goodies. We decided to watch a few movies. The kids picked “Ghostbusters” and “The Silence of the Lambs.” We darkened the family room by turning down the lights and closing the blinds. Everyone found their comfy spot on the couch and chair and we enjoyed the first movie, “Ghostbusters.” After that movie, Ella and Henry decided not to watch “The Silence of the Lambs” as they thought it would be too scary. Lindsay, Ava, and I hunkered down and watched the thriller. 

We know times are different this year when it comes to holidays. We look forward to Thanksgiving and Christmas. We do wonder, however, how those holidays will look. We wonder if we will be able to see extended family. We wonder if everyone in the house will be healthy.

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.