For my 31st birthday, I’m finally moving out of my childhood home
Every March, I connect with a county worker to reassess my waiver, which is a federally financed Medicaid budget covering home- and community-based programs. The questions are always the same: How has my health been over the past 12 months? What do I like to do in my free time? What does a typical day look like for me? My answers rarely change, but the overall process is important, as it qualifies me for the government funding that allows me to hire caregivers, among other things.
Historically, my favorite question is about housing: Are you happy with your current living situation? I always laugh, because really, what 30-year-old wants to live in the suburbs with their middle-aged parents? Of course I’m not happy. Content, yes. Privileged, absolutely. But not happy. The grass is greener, as they say. And honestly, can you blame me for wanting a change in scenery? I’ve lived in the same house for 28 years!
My mom usually responds with, “We’re currently in the process of looking for a house.” What she doesn’t say is that we’ve been looking for, uh, years now. We’ve even gone so far as to try a few on for size, only to realize that true country living was not for us. I found Iowa to be smelly, boring, and surrounded by hog farms. Wisconsin was buggy, boring, and so far away from civilization that it ranks pretty high on my “least favorite places on Earth” list. Clearly I’m too much of a city girl to live in the boonies.
In our defense, though, moving with SMA is hard. It’s not like you can go for the first property that trips your trigger. So much factors into the decision. Is the house accessible? If not, are the changes that need to be made something you can afford to hire out? Are you close enough to amenities? Potential caregivers? Is there high-speed internet? (That’s always been my No. 1 priority. I’m not sure I could live without Wi-Fi.)
Then there’s government funding. In the United States, some counties are nicer to folks with disabilities than others. That’s one of the main reasons we put off moving for as long as we did: Our current county is boring as all get-out, but it has a reputation for treating its disabled residents fairly. I’m sure you can understand why we prioritized that over everything else.
I’ve come to understand that life with SMA is really just one big gamble. Spending time in the community? A gamble, because God knows what kind of germs you might pick up while you’re out and about. Switching healthcare providers? A gamble, because God knows if they’ll be able to provide the care you need. Even hiring caregivers is a gamble — there’s always a chance you’ll end up with someone who, to put it nicely, should probably consider a different profession.
But moving with SMA has turned out to be my biggest gamble yet. So when we toured a seemingly perfect property back in May, we were understandably nervous. Were we actually doing this? Were we actually going to move?
Pulling the plug
Remember the factors I mentioned earlier? Well, this property had all of them. The house was accessible and needed minimal renovation to get me up and running. It was close enough to our usual stomping grounds that, for the most part, it wouldn’t feel like our life was being turned upside down. It had high-speed internet (yay!), and would still allow me to hike to Gillette Children’s Specialty Healthcare for that pesky, all-important SMA care.
I could keep my friend group, my parents could feel like they were living in the country once more, and — this is the big one — the stars were aligning so well that, with an addition, I would have my own apartment. That’s right, my own space, with a kitchenette and an office and a living room where I could, thank God, host without my parents walking through every 15 seconds.
When you stay in one place for 28 years, you start to feel like nothing will ever change. But sometimes the pieces just fall into place, and suddenly you are moving out of your childhood home at the ripe old age of 30. Who would’ve thought, huh?
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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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