Our 10-year-old daughter Ella, the youngest of three children, was born with spinal muscular atrophy (SMA) type 2, and needs help with many tasks throughout the day.
In the mornings, I get her bathed, dressed, and ready for the day. If she needs to use the bathroom, my wife, Lindsay, or I will take her and get her set up. If she is hungry, we prepare her food. If she drops something, we are there to pick it up.
Lindsay recently had to quit her job at our church for health reasons. After battling a four-year foot infection, Lindsay’s right leg was amputated just below the knee. Needless to say, she can’t carry Ella up and down the stairs, but she can lift her to go to the bathroom. She also can help with other activities of daily living.
After a few months of being unemployed, Lindsay decided to take the plunge and start her own business. She loves making custom T-shirts and decided to sell her products. After weeks of preparation, she opened up Casten Creations, where she offers several categories of T-shirt designs, including milestone, seasonal and holiday, baby and toddler, COVID-19, and “handicapable.”
Back when Lindsay was spending endless hours building a website, I was teaching at school (although currently I am teaching from home). This meant that Lindsay was fully responsible for helping Ella. It turns out, though, that Ella recognized that Lindsay’s time was being occupied by the business.
In an effort to help, Ella started to do things on her own. She figured out how to get herself a glass of water from the refrigerator dispenser and a snack from the pantry, plug in her iPad charger, and even pick up things when she drops them.
Independence is a great gift. Ella has risen to the challenge of doing things for herself when she is in need, and she’s proud of herself for taking on that challenge. When I returned from work each day, she would show me what she can now do, as she beamed with pride.
Lindsay started her business to contribute to family finances again. It required a sacrifice from the entire family to allow her to work tirelessly on getting the business launched. Ella played her role in this by relieving Lindsay of having to take care of Ella’s every need.
SMA is a debilitating disease. Over time, it robs its victims of muscle strength, bone health, and respiratory function. It does not affect a person’s cognitive abilities. Many people with SMA are bright and forever resilient.
Ella proved this to us by advocating for herself and performing some of her daily activities on her own, when she could. She found solutions to her problems and put forth great effort to accomplish her goals. This is why Lindsay named one of the categories of her new product line “handicapable.”
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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