When Cynthia and Dave Veuger describe their son, Matthew, words like happy and joyful come up again and again. Even in the final days of his short life, when Leigh’s disease, a rare neurometabolic disorder, resulted in him needing a feeding tube and having to take several medications a day, the little boy who loved trucks, bears, and card games was grinning.
Yet despite a poor prognosis, nothing could have prepared the North Vancouver couple and their daughter for Matthew’s death in 2011, when he was almost four.
“We thought he would beat the odds,” Cynthia says, sitting next to her husband, Dave, during an interview at their home. “If you met Matthew for five seconds, you would see how amazing he was. The second he was born, he was happy. With everything he did, you couldn’t help but burst into a smile.
“He never cried, even when he was vomiting,” she adds. “When he had to have needles in his arm, he’d say to the nurses, ‘Thank you. Have a nice day.’ ”
The Veugers admit that life has been hell since Matthew died, for them and for his older sister, Caitlin, who is now in Grade 2. Compounding their immense grief has been the reaction of so many friends and acquaintances who have grown distant at a time when the parents have needed the support and compassion of others the most.
What stands out as a rare bright spot is the help the family received and continues to get from Canuck Place, the Vancouver-based children’s hospice that provides care to those with life-limiting conditions throughout B.C.
During Matthew’s illness, he and his family spent time at the Shaughnessy home for respite care. That’s just one component of the organization’s mandate: it also provides pain and symptom management for terminally ill children, end-of-life care, schooling and outings for sick children and their loved ones, and counselling for anyone who has lost a young family member, all at no cost.
Funded in part by the Canucks for Kids Fund, Canuck Place is facing a challenging time right now as a result of the NHL lockout. Think of the 50-50 draws that take place at every home hockey game; they’re one of many team-centred initiatives that support the hospice and other charities. In fact, money from Canucks for Kids accounts for anywhere from 14 to 25 percent of the hospice’s annual operating budget.
“The lockout has a significant effect on us,” says Canuck Place CEO Margaret McNeil in a phone interview. “We had lots of notice, but it’s a big impact.”
With one of the largest concentrations of pediatric-care specialists in Canada, the organization receives some support from the provincial government and also relies on donations from corporations and individuals. It’s opening a second location in Abbotsford in early 2014.
Families, like the Veugers, who have a child with a life-threatening illness can receive as many as 20 days of respite a year at Canuck Place. Initially, the couple didn’t think the hospice was the right place for them because, even though they’d been told that Leigh’s disease would eventually shut down his entire central nervous system, Matthew’s spirit was still full of life. His care involved sleepless nights, however, and being at Canuck Place enabled the family to get the kind of help they so desperately needed.
“We just wanted a little bit of sleep at night so we could get up and play with him in the morning,” Cynthia says. “Being at Canuck Place meant we could just play a board game or paint a picture with him without having to stop and measure medicine. We could just hang out, and then at 5:30 dinner was ready.”
The family visits Canuck Place regularly for bereavement sessions. “They have been our biggest support during his life and now,” Cynthia says. There, the couple has met other parents who’ve had the same experience of feeling alienated from others, even those they considered friends, since they lost their child.
“We’ve literally had friends disappear,” Cynthia says. “Some people around us just didn’t want to deal with the situation and avoided us and continue to do so. Some people haven’t even acknowledged his death, and now that some time has gone by they want to start chatting about normal stuff. Some people only talk to you about our other child and pretend you never had another child. It baffles me that people, especially people with children, can totally ignore that.
“I appreciate that there is no right thing to say and that people are scared of saying the wrong thing,” she adds. “But in their fear of saying the wrong thing, they do the most hurtful thing, which is to walk away and avoid you and not look at you. You don’t have to say anything great, even just ‘I’m sorry for your loss.’ ”
Canuck Place bereavement coordinator Kerry Keats says the Veugers’ experience isn’t uncommon.
“To a certain extent, we need to learn to be comfortable with being uncomfortable. As a society, we’re very uncomfortable when a child—or when anyone—dies,” she says by phone. “Everyone’s experience is different, but most families report that they want to know people are there for them for the long haul. Many people avoid our families; they don’t want to make them cry or make them nervous. But make sure you remember their child and are there for them. It could be going for a walk, having a coffee and just sitting still for a while, making a phone call, or slipping a note under the door and saying, ‘I thought of you today.’ Grief is very hard to witness, but it’s okay to sit with it and let the tears be there.
“We need to recognize our own fears around it,” she adds. “Many families need time to grieve quietly, but that doesn’t mean they want you to be away.”
The Veugers, meanwhile, are especially worried about the impact of Matthew’s death on his sister. The siblings adored each other. When he was alive, she wrote him loving notes all the time. She still does.
Last Christmas, she wrote a letter to St. Nick and hung it on the Christmas tree. It read, “Dear Santa: I wish Matthew would come back alive.”
At the very least, the Veugers want their ever-smiling Matthew to be remembered.