Angels Among Us

Terri and BenBen 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.

Ben as a baby

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.)

Ben

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.

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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.

Life’s Gifts

Life's Gifts

Christmas is one of my most favourite holidays; I even love it more than my birthday. Not because of presents, or cookies, or great store deals. I love it for reasons that are far from hot chocolate and peppermint candy canes.

During the holidays, I feel especially blessed. I find myself asking, How did I ever get so lucky? Maybe you think I am crazy (it’s okay, I think the same thing sometimes too,) because how can you ever feel lucky when your whole life is a battle? Well I’ll tell you why…

In life you are going to meet two kinds of people: There are the ones that spend their lives chasing after the next promotion, and will never be able to give you an answer as to what they are chasing after. Then there are the ones who know about taking chances and forgiving those who did them wrong – they have learned the lessons of life, and do not take anything for granted. They know about doing the right thing even when nobody is watching. Their character is rare in the simplest form.   From them, you will learn everything worth knowing. These are the individuals who will show you all that you are, and not all that you aren’t.

Family and friends are pretty amazing. They always know how to brighten my day, even when they are hundreds of kilometres away. They add a little sparkle to my life. A million words wouldn’t be enough to describe how grateful I am to have them. How much love and respect I feel in my heart. These are the individuals who inspire me and lighten my load. Something money could never buy.

Years ago – while I was too busy jumping through the sprinkler, or running after the ice cream truck – I never thought about the importance of great friends and family. That’s just the thing though; you don’t appreciate your health until it’s taken away, and you don’t appreciate the ones you love until they are gone. I never thought about how important friends and family where until I needed them the most.

My life changed, and things were unfolding out of my hands. One moment I was walking through the sunshine, feeling the warm breeze around me, then I blinked and it suddenly became a blizzard. My world had torn in half. I knew I had to fight through it, and I was all alone. My biggest fear was not if I would ever survive the storm, it was what happened if the storm passed, and left me with nothing?

The ones around me were the ones that made things clear again. It was because of each and every single one of them that the storm got a little easier to handle. I know I am the only one who can fight this battle, nobody can do it for me. But I know I have never been alone through it. There are the ones that have carried me through it. They could not fight it for me, but they have got me back on my feet when my struggles have proven too much to handle. I was wrong about a lot of things, but I was right about one thing – I was right to trust that people come into your life exactly when you need them to. If there is one day, one point in time, where you should reflect on your life, it’s during the holidays. Maybe every day is hard for you, maybe life just doesn’t give you a break – I think we all go through that sometimes. But, whether you celebrate Christmas or not, there should be at least one day where you reflect on what you have, and not what you are missing. I hope during the holidays you find joy around the ones you love. I hope everyone has something to eat, and something warm to wear. I hope that day for you is about more. I know I will look around at who is around me and know I couldn’t ever possibly ask for more. Everything you appreciate is right in front of you. Right there. That is what I like to call life’s gifts. That no matter how messy life gets, no matter how many times you stumble, there will the ones that will stay with you through everything. Don’t let them go.

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Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. She was diagnosed with LGMD a few years ago, and it has forever changed her life/ She is a regular contributor, and her blogs will be everything she has learned along the way, and what she continues to learn today.