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Day 9 of 31 Days SMA Topic: Being a Partner to Someone with SMA This is Andy Rusch (@wildernessandwolf ) story: You know it’s love when the first thing you hear in the morning from the person beside you is, “Can I have some coffee?” Adventure allies. Trail companions. Nature nerds. Life partners. Rebels in love. Choose any of these descriptions for myself and Katie, but what we do have is special. It’s not special in that our relationship is unusual because SMA is involved. It’s special because we choose to travel through life together in a way that fulfills us and triumphs over hardships. When you find a love like that, you hang on — wheelchair or not, rare disease or not. Building a life with Katie has been a wildflower-bloom of adventure. There are ups and downs, but we deal with most of those challenges with humor. Living with a rare disease gives us a perspective we might not otherwise have. We met at MDA camp when we were kids and have been friends ever since, until we started dating later on. Our relationship evolved and I became Katie’s primary caregiver. I’ve learned so much from her and still do. She has taught me about caregiving and SMA, but also compassion, empathy and support. I can only say that it has helped Katie and I become stronger. I wouldn’t trade it for the world. While every relationship is distinctive, those that involve caregiving can be rather complex. In our experience so far, some features that strengthen our dynamic include communication, trust, humor and honesty. These are common characteristics of any healthy relationship, but tend to be amplified between partners who thrive in the presence of daily caregiving. It’s important to both of us that our relationship is not defined or ruled by the intricacies of a rare disease, but by our bond together. We compliment each other, laugh with each other, share heartbreak and grow. We have our own talents, our own hobbies and our own careers. We support one another and have each other’s backs. At the end of the day, we always circle back to one another. What we have is a fellowship that will last beyond a lifetime. #SMAAwarenessMonth #SMAAwareness #31daysofsma2020
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