Ben was diagnosed with muscular dystrophy in September 1998 at 17 months of age, after a summer of worrying as we waited for his appointment with the neuromuscular specialist to arrive. He was referred to a paediatrician, who then referred us on after the public health nurse expressed extreme concern that he was not rolling over, pulling himself up to sitting, crawling or bearing weight at the time of his one year booster shot.
That fall, the specialist we were relying on to tell us our baby was just at the bottom end of the developmentally normal curve told us that no, he was definitely severely lacking in his gross motor skill range, and he was pretty sure that our baby had “some form of muscular dystrophy.” Looking back, I know that he was very positive, and hopeful. He assured us that he was confident our baby would walk, albeit late, and he got us set up for weekly physical therapy. For us, it didn’t feel like there was a whole lot of hope to be had at that moment – muscular dystrophy was not part of our plans or dreams for our child.
Fifteen years ago, we began to meet people we would share our child’s life with – a team of professionals who had the tough job of being responsible for sharing or helping us understand scary information, while at the same time keeping us hopeful. That first Christmas in 1998 I sat listening to Alabama’s Angels Among Us and cried. By then we already had 5 or 6 angels in our lives who were helping us through the darkness, in particular Ben’s physical therapist, his Early Intervention Specialist, and the Director of Services at Muscular Dystrophy Canada. Even though we often felt incredibly alone over the years, we had a growing team of supportive people around us, many of whom have been on this ride with us from the beginning – people who have cried with us when we have been afraid, and laughed with us when we have experienced joy in his successes.
Today Ben is 16 years old and we are facing that best called “Transition to Adult Care.” As Ben’s main care manager I am both thrilled, and terrified. The paediatrician once told me with a grin that I am a “ferocious bear of an advocate” – a huge compliment, yet a name that reminds me often to make sure that this very average teenage boy (who never complains and rarely expresses concern) can effectively speak up for himself as his own self advocate, and to know that he’s not alone, there will be people there to help him (and it will not always be me or his dad.)
Lately we have been running into some of our angels. Some we have seen year after year at the Neuromuscular Clinic and appointments, others we see only every couple of years. Some we just happen to see at places we frequent. Always, lately, people are smiling fondly at Ben as they are sharing conversation with him about his goals and about helping him connect with adult doctors over the coming months and years. I have realized that they are feeling that same pride, and joy that we feel and that makes me smile. We’ve done a good job, I think – our family and our angels – and this Christmas I can listen to Angels Among Us and smile. We’re home, and most of the time it isn’t nearly as scary as we once thought it would be.
Happy Holidays from our family to yours.
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.