Woven With Hope
Our journey is woven (and stitched!!) with hope!
Hope can mean many things to many people. I have had hope on my mind quite a bit lately, for all kinds of reasons. I have watched friends who are struggling with loss and change – racing against time, and I have been struggling with
these things myself. I have been thinking about hope and our ownfamily’s journey with Ben’s neuromuscular disorder, especially as he is nearing adulthood and it is really time for us to step back and let him make decisions for himself. It isn’t easy, but then, I don’t think it ever is when children grow up.
When Ben was diagnosed with non-specific congenital myopathy 16 years ago we were not hoping for a cure. We were still hoping for a specific diagnosis. For a time, 10 years later, when he was finally diagnosed with Mitochondrial Myopathy, we had cures on our mind. But pretty early on, even before the Mito diagnosis, we realized that what we were really hoping for was for Ben to be happy and independent, just like we hoped for his sister and brother.
There are a few things, en route to figuring out how to help this little human be happy and independent, that I’ve learned about hope and what kinds of things symbolize hope for me.
- - Fear eats hope for breakfast, lunch and supper – if you let it. Fear can stop us faster than any physical or cognitive challenge ever could. Ask me how many people I know personally who are
doing things people were sure they never would, in spite of the challenges in front of them?
- - Wheels (on chairs, and sometimes on chairs with motors), tubes for eating and/or breathing, catheters, handfuls of pills, canes, braces (on teeth or on legs), motorized beds, commodes on the toilet/in the shower, lifts on the stairs and into vehicles and bathtubs, eye glasses, service dogs, and all of the other Assistive Devices (and people or animals!) that I haven’t listed symbolize HOPE in the form of mobility and freedom. They offer the person who’s body has it’s own agenda the opportunity to pursue and realize their personal dreams and goals.
- - Hope for a cure equates to hope for more time. More time to walk, more time to play, more time to experience all of the incredible things this world has to offer us, more time with the people we love.
- - Everyone yearns to know that there is a purpose in their life and that they have value. We can give our children hope by helping them find things they are passionate about and to realize that there is great value in many pursuits beyond the physical. People have a way of surprising us with the things they CAN do when we don’t tell them they can’t.
- - There is hope in ACCEPTANCE. Acceptance does not mean that you have given up, it means that you have acknowledged what is. “At what point do you give up – decide enough is enough? There is only one answer really. Never.” Never, never, never give up on finding a wayto make dreams a reality and live a wonderful life AND be able to see the good and wonderful in your life.
- - Strong role models provide hope– look for them, and listen to their message. Their goals need not be your goals, but through their examples doors open. Being connected to groups like Muscular Dystrophy Canada and Wheelchair Basketball Canada has opened our family’s minds and created opportunity where we once thought we saw none. We know now, that no matter how Ben’s Mito progresses, he will be able to love, have dreams (keep creating new dreams!), and have strong purpose in his life.
Terri Tumack recently resigned her position with Muscular Dystrophy Canada as Alberta’s Fundraising and Community Development Coordinator after 4 years. She has been an active volunteer with Muscular Dystrophy Canada since 1998 when her son Ben was first diagnosed with a non-specific neuromuscular disorder. Working to build the Muscular Dystrophy Canada community in Edmonton, and later across Alberta as Chapter Advisor, has been, and continues to be, her passion since the early days of her involvement with the organization.