Originally posted June 23, 2015 on Vancity Buzz.
Children with life-threatening illnesses often miss out on fun activities that many people take for granted. Each year, the Canuck Place Adventure Race celebrates outdoor athleticism, including kayaking, mountain biking and trail running specially designed so that members of the entire family can participate, especially those that are facing life-threatening illnesses.
Griffin, a patient of Canuck Place since 2004, took part in the Canuck Place Adventure Race last year. We had a chance to chat with Griffin’s mother, Alysone, to learn about their family’s connection with Canuck Place and Adventure Race:
What is Griffin passionate about?
Griffin is generally a happy boy who likes to be included in activities with his family and his peers at school. He communicates with his body language, his facial expressions and his sounds. In this way, he lets us know that he loves being around other children, having his wheelchair pushed over bumpy terrain, being included in conversations, and having stories read to him.
Most of all, he loves music and has very eclectic tastes – from rock to disco to classical. But he doesn’t like everything – he once rocked back and forth and waved his arms to Miley Cyrus but then sat very still for Robin Thicke and then started rocking and swaying again to the next song. Rap is not his thing.
What circumstance brought Griffin and your family to Canuck Place?
I didn’t realize it at the time, but last year (when we celebrated 10 years on service) the nurses shared that from their end he was transferred from Children’s Hospital for end of life care.
He was admitted to the hospital in October 2004 because of a sudden increase in the number of seizures he was having, which in less than 12 hours became a continuous seizure that lasted more than three weeks.
The medication side effects and other complications were very debilitating – at the end of 10 weeks he was dependent on tube feeding for nutrition, was very weak and starting having apnea episodes – he would just stop breathing for 15 to 20 seconds at a time multiple times a day. I thought we were admitted as a transition between hospital and home. Over the two weeks we spent at Canuck Place, the apnea episodes stopped and Griffin started the very slow journey of regaining some strength and becoming more aware of the world around him.
What kind of support does Griffin receive from Canuck Place?
Griffin receives respite support, and recreation therapy support. He usually stays at the house in Vancouver three times per year, and participates in the Summer in the City events, Camp in Squamish and special recreation outings.
What kind of support do you and the family receive from Canuck Place?
We all try to stay at the house a few times a year to enjoy some downtime together as a family. Nicole and Spencer (Griffin’s siblings) both love attending Canuck Place school and they have made some special connections with the other kids and siblings that attend Camp in Squamish. In addition to respite, Warren (Griffin’s dad) and I have benefited from the annual team meeting to review how Griffin is doing and the problems we are experiencing.
Last spring and summer, when Griffin was having a prolonged course of frequent seizures, the Canuck Place physicians, nurses and counselling team supported us in our decision to place Griffin’s quality of life above seizure eradication. All the drugs he was put on in hospital took away all of his joy for life and left him in a staring zombie-like trance with no ability to interact with the world around him. It was awful and we didn’t see the point of making him seizure free if he couldn’t enjoy living.
The team at Canuck Place arranged a meeting with the neurologist and we came to a mutual agreement to get him off a lot of the drugs. He is now only on two seizure drugs instead of six. Over the years, it has been reassuring to know the team is just a phone call away and that I can call to check in when Griffin is not doing well. In the early years, we were also regulars at the monthly parent support group. We were trying to come to terms with the different path we were on because of Griffin’s health and having a safe place to talk and process it together probably helped keep us together.
How does the support offered by Canuck Place impact you and your family?
We feel so blessed to benefit from the support offered by Canuck Place. Griffin has special needs and Canuck Place is one of the places where we end up feeling like a special family. We have learned to balance the bad with the good, and be grateful for all the blessings we have. We have met many families through Canuck Place who all have their own story. There is great healing that can occur when we talk and share with each other.
How was Griffin’s experience to participate in last year’s Adventure Race?
Griffin seemed so happy last year to be a part of the big event and to be able to give back to the organization that has supported him so much.
What did it mean to you and the family to participate?
I replied with a “yes, please” as soon as I read the email asking if anyone wanted to take advantage of the special bike and trail rider. I was thrilled about being able to get Griffin involved in the run and bike portion of the event. Not only to support Canuck Place, but to demonstrate that kids like Griffin have a place in the world and can participate just like anyone else. Looking back at the photos, I don’t know who had the biggest smiles – me or Griffin or his siblings.
What was the highlight of last year’s event for Griffin? For your family?
The bike ride, for sure. Warren and I love to go biking with the kids but Griffin has outgrown the adapted bike trailer we had so we can’t take him riding anymore. Having a bike that he can ride on was amazing – he loved the movement and being included. This year we booked two respite stays in the summer and hope we can use the bike for some family rides while we are there.
Canuck Place Adventure Race 2015
When: Sunday, September 13
Where: Jericho Beach
Who: Children 6 to 13, Teens 14 to 18, Adults 18+