Happy Father’s Day!
By Amy Shinneman | Wednesday, June 15, 2022
I was honored to be asked to be a guest blogger to discuss the topic of Father’s Day. I have been fortunate enough to have a wonderful father all my life who has supported me, always had my back, and still does! For those who don’t know me, I am currently serving as National Ambassador for the MDA. I also have a blog called Humbly Courageous where I write about my life experiences living with a type of Muscular Dystrophy called Bethlem Myopathy. I’m grateful to be able to share a few words about my father, and what our relationship means to me.
Growing up, my father had to take on a role with me that I am sure he never expected as a young man when dreaming of becoming a father. Parents don’t really think when they dream of having a child, that their child may be born with a progressive muscle disease. My father never saw it coming, but he also didn’t miss a beat when it came to jumping in with both feet and facing the challenge head on.
Early on, I started to pull up on things and walk holding onto furniture, but I never would let go. My parents became concerned when I was about 17 months old and decided to take me to the doctor. Things progressed quickly. They were thrown into what would be years and years of countless doctor visits, tests, surgeries, and listening to their most educated guesses over the years as to what my diagnosis could be.
When I had casts from serial casting or surgeries, I could always count on my father for a piggyback ride, or a ride high up on his shoulders. He provided for our family and was a great dad to my sister, who was also struggling in her own way, having a sibling with a disability that required a lot of time and attention.
My dad came from a large family with 9 siblings. He was a very hard worker, and instilled in me how to work hard, and to not give up. When I think about my father, the word grit comes to mind. I learned to dig deep from my father. My first vivid memory of digging deep was when I decided I wanted to master the monkey bars like my peers. It took a very long time, and lots of blistered hands along the way, but I did it with him there to catch me when I slipped. We did it together.
I learned to have a sense of humor from my father. He was constantly cracking jokes and was always the funny guy with the great laugh. I used humor a lot growing up to handle tough situations whether it be medically, or just the challenges of growing up, and the hardships that come along with that. We even had a joke that we agreed we would laugh about when it was time for him to walk me down the aisle at my wedding because I didn’t want to cry. It worked! We walked down the aisle with smiles on our faces, struggling to contain our laughter!
My family was always there when I had surgeries and were all involved with the recoveries in one way or another. When I was a young adult, I had to have an extensive ankle surgery to fuse my ankle. The only time I could have the surgery done turned out to be a time that my mom and sister had a vacation planned. My dad told them to go ahead with their trip, and he and I spent the week together. Once again, he stepped up to help me recover. While he may have overcooked some spaghetti, there were many more memorable moments. Most notably the times he made me laugh when I wanted to cry. It was one of the best weeks we ever had together, even though it was a tough time for me physically, and for him as my sole caregiver that week.
My father was also there for me when I was 44 years old and finally received my diagnosis of Bethlem Myopathy that we had been searching for since I was 17 months old. There were tears that day, but they were tears of relief that we could lay the search to rest and focus our energies on other things. I know for my father that day had to be a relief. We celebrated, not the diagnosis, but the end of the search. The search was tiring and long, but one thing is for sure, there were many laughs along the way. We all learned a lot during that time. Not a day goes by that I am not thankful for my father, and the impact he has had on my life.
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