By Sue Tiffin
While living during a time of pandemic has been worrisome, it has provided unique challenges for the McCutcheon family. Teenagers Tecwyn and Tathan have a neurogenetic disorder called Angelman Syndrome, which results in medical complexity that has left them and their parents, Sean and Bethan, always considering what the future might look like. This year has urged them to take more action in planning for that future.
“What does it look like for our family if the boys get sick?” said Bethan, and then, listing other questions that have been plaguing the family’s thoughts: “How would COVID react not only physically with their bodies but neurologically? Will we lose seizure control? Will they regress with gross and fine motor skills? Will we be able to pick up on symptoms quick enough so we can get them the medical intervention they need? How does it look for our family if my husband and I get sick? What about the boys? This has made us have a look at our lives and if we are ready for the next chapter. Are the boys sorted if something happens to us? The answer was clear. No. We saw what happened in Markham and in nursing homes across the province. It was heartbreaking. So we have listed our house for sale and now focused on building the boys their forever home [on a separate farmland in Minden]. We want to get them sorted now while we are healthy and able.” The new property is one that has more space for more activities and is closer to town, making it more accessible to and by the community and Tathan and Tecwyn’s friends.
Halloween, said Bethan, typically a beloved holiday for the McCutcheons, is also layered for her family.
“It’s about the boys in their community making positive connections,” she said. “It’s about watching for and celebrating independence such as the boys walking to the door on their own, figuring out how to open their own bags, holding the bag open long enough for the treat to be put in, seeing them take the initiative to sign thank you without a reminder. It’s about seeing our kids highly motivated to do physio. It’s about the many laughs Halloween can bring by being silly and it’s about the pile of candy dumped on the kitchen table at the end of the night.”
This year, of course, would be different.
“We won’t be going trick or treating in the traditional sense, and so Tecwyn and Tathan won’t have that community connection,” said Bethan. “It weighed on my heart. So I had a think of how can I connect the boys with their friends, and with the community, and have it be COVID respectful. And most importantly how can it be accessible to everyone?”
Just recently, Tecwyn had been granted a dream from the Sunshine Foundation, a charity that fulfills a request by kids and youth with severe physical disability or life-threatening illness, and he had requested a customized trail system in his backyard.
“The boys have 100 acres of forest on their land, but sadly Tecwyn had only seen .25 km of his land as he would have to navigate through the bush,” said Bethan. “He wasn’t able physically and mentally to go further. He would become very overwhelmed. So he asked for pathways to be cleared for him. The Sunshine Foundation granted his request and Ken from Happy Trails came and put trails in for Tecwyn.”
The trails opened up the forest to Tecwyn, and also an opportunity for a Halloween event, in which friends of the family could sign up to decorate a site along the pathways as part of the first Skeleton Showcase along Bag of Bones Boulevard contest, in hopes of winning a $100 gift certificate to one of two local businesses, donated by the family and a family friend. The McCutcheons supplied a skeleton or two which they set up at each site outside weeks prior to entrants participating, and on an assigned day and time, participants were scheduled to come with their own props to create a Halloween scene.
“Then other families could sign up to walk through and check out the Skeleton Showcases,” said Bethan. “This way no families participating in the contest or doing the walk-through were overlapping, to protect their social bubbles. And voila, we had a COVID-respectful Halloween event.”
Response to the event was quick and enthusiastic, with seven decorating spots filling up quickly. A hunting scene, beach scene, bathing skeleton scene, campfire scenes, delivery person scene, and graveyard and zombie scenes came together within hour-long time slots, with contestants keeping in mind weather, and environment-and-wildlife friendly props.
“Contestants came at staggered days and times so we actually saw it grow,” said Bethan. “You’d walk through one day and there were two skeleton showcases and then next day there was another and so on. So that was super exciting. Our friends are so creative and have such a great sense of humour. All the displays were amazing.”
Bethan said the family will absolutely host the event again next year, and is hoping to support more local businesses with more gift certificates being offered and more opportunities for participants to win.
“We are so excited to offer this Halloween event to our friends,” she said. “It’s good for the soul to get outdoors and have a good laugh. We love that families will now include this in their new traditions for Halloween. It has such potential to grow into something … I hope it will become a Halloween tradition for our friends and community that they look forward to. That it gives their families a stronger connection planning and decorating and all the fun that naturally comes with being part of this event. This all makes the connection of the community and Tecwyn and Tathan even stronger.”
A walk-through for the event gave people of all ages the opportunity for a private scheduled visit in an outdoor space, seeing the prepared sites – some wore costumes, some posed for selfies.
“There is fun to be had during a world pandemic,” said Bethan. “We just have to give it a think. COVID has the power to completely isolate but we as a community won’t let that happen. And I think this event proved that.”