Thanks to generous community support, Rotary Flames House – Alberta’s first pediatric hospice - has become a place of solace and comfort for families of children with progressive, life-threatening illness. Here, they can find the care they need during their child’s end-of-life journey and well before that point through much-needed respite care.
Rotary Flames House offers rest and renewal for families dealing with the demands of caring for children with medically complex and incurable illness. At the same time, the team customizes programming for these special youngsters so they can make the most of every moment of their childhoods.
Making the most of every moment
Melinda and Jason are the proud parents of three children – David, Parker and Emily. As with any family of five, life can be a juggling act of school activities, family commitments, sports, and appointments. “What makes our family outings a little more exciting is the amount of gear we need to take along,” says Melinda with a chuckle. “With feeding bags, suctioning equipment, wheelchair and such, we make quite a commotion when we arrive on the scene.”
Both 11-year-old Parker and 7-year-old Emily were diagnosed at birth with Cri Du Chat Syndrome - a genetic condition for which there is no cure. Since their illness causes a wide range of symptoms, both children have relied on extensive care at the Alberta Children’s Hospital. Both have difficulty swallowing and require tube feeding, Parker has a tracheostomy tube to help him breathe, and Emily was recently diagnosed with diabetes. Mobility is also a challenge. Parker started walking at six years old while Emily has yet to take her first step. Parker talks to his friends and family with a communication device and soon, it is hoped that Emily will be able to do the same. Despite these challenges, the family maintains a very positive attitude and enjoys being active. Says Jason, “As long as we have power, we’re good!”
With the round-the-clock care required by their two younger children, Melinda and Jason make a concerted effort to ensure they are carving out time for their 14-year-old son, David. “David plays hockey and lacrosse which makes for a busy schedule of games and practices,” says Melinda. “We love to cheer him on, but taking Parker and Emily to the games is just not practical all the time.”
Recognizing that even the most resilient parents need support, Melinda and Jason say they feel fortunate to be able to access respite care for both of their children. “It took some convincing to accept the support that was being offered to us. However, we knew that if we were burnt out, we would be no good to anyone,” says Melinda. “I was worried that they wouldn’t know how to care for the kids the way Jason and I do. But we soon realized that it is a very special group of people who care for the children at Rotary Flames House. They make the kids feel so comfortable and right at home. In fact, Emily gets mad when I tell her it’s time to come home!”
“Parents tell us that respite care is absolutely necessary for their families,” says Dr. Marli Robertson, Medical Leader of the Children’s Hospice and Palliative Care Service. “It allows parents to get a bit of a break from the constant vigilance required in caring for their children at home. We’ve seen that this reduces their stress level and ultimately leads to better family well-being and quality of life for the child.”
Art therapy, horticultural therapy and the multi-sensory room are all things the children enjoy. Emily’s favourite
In addition to respite stays, the Bevis family also enjoys taking part in family support programs. “When he was younger, it was really beneficial for David to attend the Sibling Hope Group,” says Melinda. “It helped him understand that he wasn’t the only one with siblings who require some extra care and attention.”
Attending special events at Christmas and Halloween, as well as summer barbecues designed for families like theirs has made a difference, too. “It means a lot to connect with other families who are walking a similar journey with their children. We totally understand each other and no one gets too fussed when I have to stop a conversation to hook up my child’s feeding tube,” says Melinda.
With the House supporting them and 140 other families each year, Jason says he is eternally grateful. “Attending out of town tournaments with David or taking my wife on a weekend getaway is only possible with this special kind of support from Rotary Flames House. Knowing that our kids are in the best possible care makes it that much easier. We don’t have to worry and we know they’re having fun. It’s such an incredible gift to our family!”