Because I still have the trach, I am reliant on my family and skilled nurses to perform all activities of daily living, such as putting me on the ventilator every night, clearing my airway as needed, dressing me, bathing me, and toileting. At 13, after contracting pneumonia, I spent four months in rehab and got a trach. At age 3, I got my first wheelchair – and my folks ensured our home was accessible by widening doorways and building a ramp. When I was a year old, I was diagnosed with Muscular Dystrophy, a disability that weakens your skeletal muscles greatly over time. In fact, it may have to remain a dream since, as a disabled person, the Medicaid crisis impacts my choices greatly. While I love my folks and adore my bedroom, my own place would be a dream. But at almost 40 years old, I am still living with my parents. The kitchen can be small, and there doesn’t really need to be a huge backyard since I hate going outside I’d be fine with a big window to sit by while I read. One day, I would love to have my own home – 2 bedrooms and an office I’d turn into a library.
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