On Thursday, Feb. 28, the Ottawa Senators Foundation is hosting their annual telethon—a show dedicated to sharing stories about how your donations are making a difference for people and programs in our community. Read how parents Andrea Gumpert and David Bell have benefited from the incredible support at Roger Neilson House.
By Sonia Mendes
As Andrea Gumpert looks through a photo album holding special memories of the past year, she notes that her friends from Roger Neilson House dominate many of the pictures.
“This is our family book, yet Roger Neilson House figures prominently in it,” says Gumpert. “About a third of the photos are either at the House, or with people we know from there.”
The album speaks volumes to the importance of Roger Neilson House–a hospice for paediatric palliative care in Ottawa–for Gumpert, her husband David Bell, and their two sons, Emanuel and Florian.
Emanuel was about four months old when his parents realized he wasn’t hitting his developmental milestones. Emanuel was diagnosed with severe global developmental delay at 18 months. By age four, he was diagnosed with an extremely rare genetic mutation. Today, seven-year-old Emanuel spends a week at Roger Neilson House every couple of months, as part of a pain and symptom management program. Supported by a wheelchair, he’s cognitively delayed, non-verbal and prone to seizures.
“The connection to the House originally started right after he started having seizures,” explains Bell, adding that they don’t know what his son’s lifespan will be. “For kids like Emanuel, where they’re a big question mark, the goal is to keep them healthy and to monitor them.
“The benefit of the House–of him going in every couple of months–is that the staff know him and they can pick up on behavioural changes and suggest ways to improve Emanuel’s quality of life.”
“It was hard for us to go back there in the beginning.”
However, Gumpert and Bell visited Roger Neilson House even before Emanuel was born. Their first-born son, Étienne, died in an accident when Gumpert was eight months pregnant with Emanuel. The couple went through bereavement counselling to cope with the loss of their first child. Returning to Roger Neilson House for support with Emanuel meant starting a fresh chapter.
“When we went back to Roger’s House to start a new relationship–not bereavement–with Emanuel, it was hard for us to go back there in the beginning,” recalls Gumpert.
Roger Neilson House also offers respite care for parents, a service that Gumpert says was difficult to accept at first.
“I remember that first weekend we took them up on respite and I bawled all weekend,” she says. “It was not respite, it was guilt; we’ve admitted he has a life-limiting illness.”
She says it took several periods of respite for her to accept that it’s okay to accept help. “Now I know that I’m taking care of myself–so I can be a better parent,” says Gumpert.
But beyond the many services offered by Roger Neilson House, it’s clear that what means the most are the rock-solid friendships they’ve developed with other families.
“There’s a group of parents that call ourselves the Tribe,” says Gumpert. “We all come from different backgrounds, but when we get together we are focused on the here and now; we have no choice because that’s what our kids make us do.”
Bonded together through good times and bad, the families of Roger Neilson House always look for ways to support each other.
“They’re somehow able, on a dime, to show up at another parent’s house… when it’s really needed.”
“Somehow these friends of ours–who are probably the busiest of the busiest–they’re somehow able, on a dime, to show up at another parent’s house, to bake a lasagna or show up en masse when it’s really needed,” says Bell.
Gumpert speaks with strong compassion about a good friend, and her 11-year-old son. Extremely medically complex, he is plagued with multiple seizures every hour. Fully cognitive, he has recently been enduring intense pain.
“I find it absolutely heart-wrenching, what they’re living,” says Gumpert. “When I heard that he was scared and crying–that he’s in a lot of pain–that just broke my heart.”
In a gesture of support, Gumpert bought a large canvas and washed it lightly with paint. Then she bought non-toxic, washable paint and left instructions at Roger Neilson House so that her friend’s family and friends could create handprints on the canvas.
“My intention was to show my friend’s son how many people absolutely love him,” says Gumpert. “It’s been filling and filling with hand prints. My friend likes how they’re layering on top of each other; it’s becoming abstract and quite lovely.”
Their friends plan to frame the completed piece and hang it in their son’s room. Gumpert hopes that the many layers of handprints–representing so much love and understanding from the Roger Neilson House community–will offer the family some comfort.
“When it’s three in the morning and the world is dark and lonely, I hope they’ll see this painting in their son’s room and be reminded of the many people that love and support them,” she says.
Tune in to the Ottawa Senators Foundation Telethon powered by Mitel on Thursday, February 28 beginning at 6:30pm prior to the Senators home game versus the Edmonton Oilers on TSN. To make a contribution, please visit www.sensfoundation.com, call 1-844-8GO-SENS (846-7367), text GOSENS to 45678 to donate $20, or text SENS to donate $10. All donations made before February 28th will be matched up to a total of $25,000.