Living at Home as a Young Adult with SMA

People look at me questioningly upon realizing that I live with my parents at the age of 22. Moving out is often considered a rite of passage. People expect me to do the same, even though many young adults enjoy living at home with their families.

I don’t know what runs through people’s minds when they try to process my living situation. But I’d like to shed some light on living at home as a young adult with SMA. Many people my age are learning to navigate adulthood from their own houses, but I’ve chosen to make my home in the master bedroom of my parents’ house.

We knew upon moving in a few years ago that the master bedroom would best suit my needs. The spacious room and large closet provide plenty of space for my numerous machines, including my ventilator, cough assist machine, Vest airway clearance system, and Hoyer lift. We keep medical supplies alongside my snow globe collection, clothing, beloved books, “Doctor Who” memorabilia, and art supplies. The attached bathroom allows for quicker transitions from my bed to the toilet or shower. The proximity to my bedroom also offers more privacy.

I essentially have my own little apartment. I can spend as much time as I want to here.

One of my fellow columnists, Kevin Schaefer, once wrote about his independent living space in his parents’ house, which reminds me of my situation. We have dedicated our walls and shelves to different fandoms, but we both have spaces we can retreat to when we want some time to ourselves. We’ve also found ways to live as independently as possible.

My decision to live with my parents also impacts my medical care. I am blessed to have fantastic home nurses, but they don’t work 24/7. My mom remains my primary caregiver. She typically cares for me in the evening after work or whenever a nurse is unavailable.

Because my parents spend so much time caring for me, it makes sense for all of us to live under one roof. If we didn’t, they would probably spend so much time at my house that we might as well move in together anyway.

I want to live at home, which I think people have a hard time grasping. Many people seem eager to leave the nest once they turn 18 and find it confusing that I don’t want to do the same. But I’m incredibly close to my family and enjoy being with them. I’m in no hurry to leave. I look forward to spending time with them after work or school. We enjoy eating dinner together, talking about our days, and our frequent game or movie nights.

Please don’t think that I don’t want to live with my parents. No one is making me stay. I’m free to go if I choose, but living at home is my choice. I choose to live at home because I’m happy here. There is no place I would rather be than with the people I love the most.

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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.