Jamie and Amy Shinneman hug and smile in their kitchen.

MDA Ambassador Guest Blog: A Story About Finding My One True LOVE….

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MDA Ambassadors play an essential role in furthering MDA’s mission while representing and empowering the neuromuscular disease community. Quest Ambassador Guest Blog series provides a platform to share their personal stories, perspectives, and experience.

Teenage Jamie and Amy Shinneman smile, Amy wearing yellow graduation gown.

Jamie and Amy at Amy’s high school graduation.

My husband, Jamie, and I met when I was a freshman in high school and he a sophomore, after being introduced by mutual friends. Years later, when I asked him what he thought when he first saw me, he told me he thought I was pretty, and naturally he wondered why I walked differently. I guess the rumor around school was that I had a clubfoot, which I didn’t know until just recently, and was not true. He said he was unsure what that was, and he did, honestly speaking, have reservations about going on a date with me. However, after our first date, and taking the chance to get to know me, he said none of that mattered anymore. He saw my heart and liked my sense of humor. We both fell in love quickly.

Halfway through his senior year, my junior year, he decided we should break up. We were way too young to be so serious, and our relationship had some serious flaws. As a young girl with a disability, I had many insecurities. This led to a lot of the issues we had in our young relationship. It was something that I needed to work on personally. Taking a break, allowed me to realize that I did need to work on that within myself.  In retrospect, it was the best thing for us, even though at the time I was heartbroken. I’ll never forget what his dad said to me as I left his house in tears that evening. He said, “Hey kiddo, if it’s meant to be, it will be.” I really believed that. We ended up staying friends, and even talked occasionally about the different relationships we were in. We always had a special bond, even when we weren’t a couple.

Amy in a white wedding gown and veil smiling next to Jamie in a black tuxedo on their wedding day

Amy and Jamie on their wedding day.

After graduating from college, I went to visit him in Memphis, TN where he was living. That weekend, we decided to get back together, and I moved from Indiana to Tennessee the next month. Jamie proposed about a year and a half after I moved to Memphis on Christmas morning. He had his parents wrap him up in a giant box, and when I opened it he jumped out of the box and proposed! I was definitely not expecting it, but it was a wonderful moment for us and our families.  We had a large wedding with all of our family and friends. . Recently, we celebrated 23 years of marriage!

I am a fiercely independent person, but as my muscular dystrophy progresses, I need more and more assistance. I never used to need to use a cane, walker, wheelchair, or scooter unless I was recovering from a surgery. Now, all those things are in the mix. Just as those things have slowly had to be integrated into my life, they have become a part of Jamie’s life too. As I have had to find a new balance in my life and maintaining my independence due to the changes of my physicality, we have had to adjust our responsibilities as well. Maintaining open communication about my new needs has been helpful.

Jamie and Amy running in a marathon.

Jamie and Amy running a marathon.

As a couple, we have found unique ways to connect.  One of the ways we have done that is by running marathons together. He runs while pushing me in my duo bike. Just as in our relationship, this requires a lot of communication. We each have a role. We train together once a week when we have an upcoming marathon. It’s been a great way to get to know each other on an even deeper level. He is obviously doing the physical part, but I help him to stay strong mentally, and by providing the nutrition and hydration that he needs during the race. We are a true team when running these races together. In April, we will run our 4th marathon together at the Boston Marathon!

Often, when living with a disability, there are frequent doctor’s appointments. When he is able, he comes along to support me. That really means a lot, and it also helps him to stay on top of information. He’s a fantastic note taker at my appointments, which can be full of information that is often too much to take in and remember.

I know Jamie well enough to know that he would want me to mention that I do a lot of things for him. Just as he has his responsibilities around the house, I do too. We are a great team when running marathons, as well as in our normal everyday life, raising our two children. Tweaking our routine when we need to has been key in keeping things running smoothly.

Jamie and Amy running a marathon.

Jamie and Amy running a marathon.

In closing I’d like to share this…my cousin, who is retired from the Air Force, once told Jamie after spending some time with us, that he has great situational awareness. His cousin was spot on. We have known each other for so long, and Jamie is so familiar with my disability that we don’t even have to speak a word. He preemptively knows what I need a lot of the time. It’s like a well-practiced and perfected dance. It’s really a beautiful thing. The silver lining.

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