Joanna and Bertran Labonte take life with son Campbell one day at a time, making each as happy and fulfilling for him as they can.
"Every day, we want it to be a good day," says Joanna. "When it's a good day, it's wonderful. When it's not, we're reeling with fear at what that means for the future."
Seven-year-old Campbell Labonte was born 24 weeks premature. He is deaf, blind and can't speak or walk. He has cerebral palsy and has developed Stage 3 kidney disease. He's endured dozens of surgeries and countless other challenges.
His parents are indomitable spirits - always, it seems, hopeful, upbeat and resilient. Joanna often equates their life with Campbell to caring for a 40-pound newborn. They feed him, lift him, change him, bathe him and entertain him.
The love and care is constant, even at night when he doesn't sleep. Joanna and Bertran Labonte, both in the military, have lived in that bleary-eyed, chaotic netherworld of the newborn parent ever since their son arrived Aug. 10, 2008.
"We love that kid so much and are in awe of how he manages each day," says Joanna. "He is the world to us. He is filled with happiness.
"His highs are so high and his lows are so low but he has a determination to move forward and strive for happiness. He has taught us so much. It is so cool to look at life differently than the way most of us do every day.
"Campbell's done that for us."
Joanna doesn't pretend can't be difficult. And when it all catches up with them and they're feeling overwhelmed, they pick up the phone and call Roger Neilson House.
Supported by the Ottawa Senators Foundation, Roger Neilson House is an eight-bed paediatric residential hospice for families with children and youth living with a life-limiting illnesses. It is named for the late Sens assistant coach, Roger Neilson, and located on the grounds of the Children's Hospital of Eastern Ontario (CHEO).
Roger Neilson House provides a home-like environment and access to respite, acute end-of-life care, pain and symptom management, transitional care, grief and bereavement support and perinatal hospice care.
One of only six homes of its kind in Canada, it has provided nearly 19,000 days of care to children since it opened in 2006.
For the Labontes, Roger Neilson House has been a godsend during those times when things aren't right and they're at their wits' end because they don't know why things aren't right.
Roger Neilson House has provided care and expertise, as well as support and respite for Joanna and Bertran, giving them a measure of peace of mind when things go wrong or as they take periodic breaks from the 24/7 care their child requires.
"Those weeks when Campbell doesn't sleep at night or there's some pain that's bothering him that we want to try to isolate and help, that's when we call Roger Neilson House," she says. "Pain and symptom management is something they do so well.
"We appreciate that work, because we're all guessing at what the issue might be and having clinical eyes on him that really understand his complexities reassures us that we're not alone in this battle."
It's the little things about Roger Neilson House that really resonate with Joanna - something as simple as her request to remove Campbell's feeding tube so he could enjoy one of the few senses not affected by his condition, his taste. The doctor said "sure," sat down on the bed next to them and removed it.
"It's that environment," she says. "Although they're skilled in their clinical practice, nothing feels clinical about the home.
"It just feels warm and inviting and we're not intimidated by any of it."
Joanna says she remembers getting the Roger Neilson House referral a few years ago and the relief she and her husband both felt as they toured the home.
"The staff are remarkable. They know their stuff clinically but they also have the compassion and understanding we need when things are really tough."
They've also formed strong friendships with other families at Roger Neilson House - friendships, Joanna says, "that go beyond the meaning of the word."
They share the depths of fear and anxiety that they all know only too well. They know things can change profoundly for any of their children in the matter of an instant.
"We get it. We celebrate the highs together and we comfort each other in the lows. This all stemmed from the parent support group that Roger Neilson House provides on a monthly basis. Great friendships have come from this."
And for Campbell? The joys in life come from being close to people, a simple touch, exploring with his hands, the sensation of wind in his hair and the feel of vibrating music.
For his Make a Wish, the Labontes have rigged their motorcycle with a custom sidecar to accommodate their son's wheelchair. The plan is to take him cruising come spring so he can feel the rushing wind and vibration of their Harley's big V-twin engine.
"We're really excited about this," says Joanna. "It's something we could never do as a family and now we can."
Tune in to the Ottawa Senators Foundation Telethon on Thursday, March 2 beginning at 6:30 p.m. prior to the Senators game vs the Colorado Avalanche on TSN 5.
To make an contribution, please visit www.sensfoundation.com or call 1-844-8GO-SENS (846-7367)