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Day 23 of 31 Days SMA Topic: Working With Caregivers This is @her_shadow16 ’s story: For me, needing help has always been the hardest part of having SMA. I crave independence, abhor dependency, and avoid displaying the help that I need at almost all costs. And yet, needing help and a lot of it – is a huge part of my life – something that I have come to accept and just about (but not quite yet) embrace. Beginning in high school and through college and into my adult life, I’ve been lucky enough to find some individuals who make receiving that help not only tolerable but something I look forward to. My personal care assistants (PCAs) have enabled me and continue to enable me to graduate from college, work full-time, live independently, travel on my own and do so much more. Assisting an independent adult with intimate tasks is not an easy job, but I’ve been lucky enough to find some individuals who make our relationship – the professionalism balanced with a heavy dose of flexibility, humor and compassion – effortless. Of course, that’s not always the case – there are outliers in every direction and many in the middle, but upon reflection, I’m left with a deep sense of gratitude. My PCAs haul me on and off planes, listen to me sing, rant or cry in the shower, help me burn new recipes, obsess over organization, and rarely sit still. Yes, I wish I could do these things on my own, but I’m thankful that if I have to do it with an audience or an extra set of hands, it’s with some amazing pretty amazing people. Many of them are or were, future nurses, doctors, PTs, OTs, Physician’s Assistants, Teachers or Nurse Practitioners. I’m so proud of all they’ve helped me do and all they’ll do. Some (but not nearly all or enough of them) are pictured. #SMAAwarenessMonth #SMAAwareness #31daysofsma2020
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