Last week, I wrote about the harsh reality that sometimes is SMA. I retold the story of my attempt to drive through the mountains of New Hampshire and how after breaking down at a gas station, I realized my body had other plans.
I explored the idea that there will always be circumstances beyond our control, especially when dealing with something as unique as life with SMA. But I also suggested how our strength to live each day is perhaps the reason we’ve been given this life, and I ended it with this: “SMA may win some battles, but it’ll never win the war.”
As a little girl, I had a framed picture of Thomas the Tank Engine in my bedroom that read, “I think I can, I think I can, I think I can.” This was my motivation while growing up. My parents would always point to the sign during my weakest moments, which taught me to create a silver lining to every story. With the willpower to persevere, I could conquer even my toughest battles. The ending to my story in New Hampshire was no different.
It was approximately 9 p.m. when I cried into my mother’s shoulder. She hugged me tight and stroked my hair, begging me not to let this ruin my day. At my weakest moment, she looked at me and said, “The night isn’t over. We don’t have to let it end this way.”
Due to my non-subsiding motion sickness, we decided to crash in Boston for the night, about halfway to home and near a hospital in case my symptoms worsened. I’ve always had a bittersweet feeling toward this city. While Boston has so much history and beauty, I have spent most of my days there in the hospital.
Now, here I was, at a hotel my cousin had recommended that was arguably too classy for us to fit in, ready to redeem myself from this seemingly awful night. We pulled up to the scene looking like the Beverly Hillbillies with a doorman and bellboy waiting to grab our nine pieces of luggage for a 12-hour stay. Welcome to the world of traveling with SMA! We all found something to laugh about from it.
The following day was spent exploring the city and all the things I’ve longed to do. My friend and I enjoyed an outdoor brunch, found a delicious cupcake bakery, drank espresso while trying to fit in with the locals, explored a beautiful park, and capped the day by eating a delicious meal with my parents before heading home. While eating, we laughed and recounted all the memories we packed into those few hours. Even though the day before was nothing like I wanted it to be, my mother reminded me of the beautiful tomorrow that came from it.
That’s the thing about life with SMA. With every setback, there will always be a comeback. With every challenge, there will always be a solution. And, no matter how dark our worlds get, there will always be a silver lining waiting to be created. We just have to be willing to blindly persevere through the darkness, first.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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