The first time one of my personal care assistants (PCAs) brought her daughter, I was kind of in awe. She was only a few months old at the time. She slept most of the day and could be trusted to lie on my bed, staring up at the ceiling, without rolling over. Every morning, my dad would cuddle with her in his favorite rocking chair and watch “Finding Dory“ as my PCA got me ready for the day. One time, we crept into the living room, afraid of waking her up, only to find them both asleep — my dad’s jaw slack, his mouth hanging open.
I watched her grow and acquire new skills. Before I knew it, she could sit up on her own and crawl around my bedroom. I quickly became paranoid, scared I’d find her under my wheelchair one day, a hand or foot beneath one of my wheels. Instead, she learned to walk, tottering around our living room basement on perfect, chubby legs. By the time she and her mother left, she was pushing me around my room, convinced she was strong enough to move my 400-pound wheelchair.
We’ve since hired two new PCAs. Their daughters are six months apart, different in every way imaginable, and I love them deeply.
The oldest is set on helping me get ready each morning. She helps her mother adjust the sling beneath me in bed. Later, after I’ve showered, she dries my feet with a towel, combs my hair — sometimes a little too eagerly. If I’m staying home that day, I let her choose my clothes. Once I get dressed, she tries her hardest to put socks on me, and proudly announces that she “did it” after tugging them up over my ankles. She wears my T-shirts as dresses, my hair ties as bracelets, and alternates between my slippers and my hats.
She, too, is convinced she can push my chair around. Every morning, as my PCA prepares my nebulizer treatment, she backs up a few feet, shouting, “C’mon! C’mon! C’mon!” I nudge her with the edge of my footrest, and she wraps her arms around my legs, holding on for dear life as I drag her across the hardwood. When I do my In-Exsufflator treatment, she hides her face against my knees; when I brush my teeth, she has to brush hers along with me.
The younger one is shyer. Quieter. She loves YouTube, and sits perched on a step stool as her mother gets me ready. She hasn’t mastered speech yet, so she calls me Donna: “Don-NA, Don-NA!” Every half-hour or so, she runs into my room and waves. Sometimes she’ll show me the toy she’s playing with, or the video she’s watching on YouTube, before she bolts, tiny feet pattering against the floor.
This morning, as she waved her stubby little fingers at me, I recognized myself in her. Growing up, I hated my hands, having somehow equated perfection to Anne Hathaway’s hands — probably because of my obsession with “The Princess Diaries“ as a young girl. Anne’s hands were pale, with long, slender fingers, and mine were small, flabby, with sharp, jutting angles. What was I supposed to think?
But this morning, glancing from those tiny, adorable fists to my own awkward hands, I felt myself smile. These girls bring so much light to my life, and now, unexpectedly, self-acceptance. My hands aren’t Anne Hathaway’s hands, but they take after some of the biggest pieces of my heart. It can’t be all bad, not when I melt every time they touch me, baby-soft skin against my own.
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.
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