Superheroes
Steven Shurr of Parry Sound is still basking in his success as the Miracle Network kid. He is one of the top contenders for having raised the most money, over $8,000 for Sick Kids Hospital, selling Blizzards at D.Q. this summer. He is without a doubt a very special person who has courageously faced his life of complex medical needs due to being born with Spina Bifida and Hydrocephalus as well as a developmental disability. Steven’s passion for Spiderman and Iron Man is as real as the characters are fictitious. I think he connects with the superheroes because they are brave, cunning and heroic just like him. Steven would dearly love to meet Robert Downey Jr. who plays the character of Iron Man. Steven explains to me that Downey has a “sarcastic” sense of humour and the 10 year old Steven also tells me that “yes, he does understand the meaning of sarcastic”.
Of course no superhero could perform their daring feats without the love of a loyal woman who supports their mission in life. That woman for Steven is his mother Carrie. I was deeply moved by Carrie’s strength and commitment to her one and only son. As any other parent would, Carrie wants her son to experience the same things in life that she enjoyed growing up. One of those things for Carrie was summer overnight camp. Despite the odds against such a thing ever being possible for a boy who requires daily medical support (Steven has a special tube installed in his stomach that is used daily by nurses to flush him and help keep him healthy), and has a developmental disability; community networking made it happen.
Communication, commitment and cookies were the key ingredients to how Steven found himself one of 6 boys in a cabin at Camp Awakening in Minden, Ontario. Carrie is unafraid to express her dreams for Steven which invites people to participate in their lives. It is wonderful to have ‘a village’ to raise any child, but families raising children who have disabilities need the love and resources of their surrounding community. CLPS helped research camps and found the information that Steven and Carrie needed to get started. Shirley Turner, CLPS Inclusion Facilitator, also helped coordinate the process all along the way. There were many forms and different assessments by professionals required to meet the eligibility standards needed to ensure Steven’s safety at camp, given his complex medical situation.
(Go to www.ontariocamps.ca to find the right camp for your child)
When it seemed that the local Community Care Access Centre was not going to be able to find a way to provide medical care, Steven, Carrie and her cookies showed up at the office to ask them to keep trying. CCAC did find a remarkable nurse from the Minden area who ended up being a huge help to Steven. Not only did she care for his medical needs but she also helped him with the pangs of homesickness he naturally suffered during his first week away from home. The Ministry of Community and Social Services was a big help with funding, and despite obstacles, found a way to support the Shurr family.
In the end, like generations of kids before him and like his mom, Steven has some great camp adventure stories to tell anyone who cares to ask him. Just ask him about the day his canoe tipped over in a strong wind storm!
His mother Carrie explains to me, when you have a kid like Steven you “appreciate every minute of every day. When I see Steven happy and actively enjoying life it brings me great happiness”. Carrie never gives up finding ways to make the life that Steven lives, when he is not at Sick Kids Hospital undergoing surgery or suffering from infections caused by his illness, as fulfilling as she possibly can. She now dreams of finding a way to have Steven go up over Parry Sound to see his school, the town and the Bay from a water plane or helicopter. She murmurs quietly and with a full heart “I want him to feel what it is like to fly”.
The community can help make this dream happen for Steven and Carrie as easily as it provides for the everyday needs of all its citizens. In the words of CLPS Executive Director, Jo-Anne Demick, “Community First” is the philosophy that we have committed to as the cornerstone of all our work and decision making. It is critical that this philosophy is fully embraced by Community Living Parry Sound so that we can realize our Mission: To promote and facilitate the full participation, inclusion and citizenship of people who have a developmental disability. With this vision all we need to practice is open communication, a strong commitment to the mission and maybe some of Carrie’s cookies.
Tricia Bain
