31 Days of SMA: Heather Halsey Dye

31 Days of SMA: Heather Halsey Dye
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Day 14 of 31 Days SMA Topic: Raising a Daughter to Adulthood This is Heather Halsey Dye’s story: My phone rang in January 1999 as I stood in my farmhouse kitchen. I remember the nurse speaking for what seemed a long while, but I only recall a few words. “The results are positive. Your daughter has spinal muscular atrophy. Do you understand?” I was entering my sophomore year of college and working part-time while relishing my favorite new role – being a mom. My camcorder captured nearly every moment of my daughter, Halsey’s, first year of life. The times when she smiled so greatly her cheeks swelled up as sweetly as a marshmallow becoming a S’more. And as she rolled over from her back to her side, but just once. I didn’t understand. I read all the right books, but I was overwhelmed in uncharted territory. Appointments, updates, information persisted from doctors giving us prognoses like “Prepare. Halsey won’t live past the age of 3.” Despite this, we managed to find a pediatrician who reassured me that her potential only had a cap if I placed one. With faith and hope, I began paving the way. I would strategize to reset former ideas of what it meant to raise a daughter, looking at life through a lens that allowed each moment to bring resiliency. Parenting in an SMA home brings other stressors: financial barriers, school inclusion, etc. I would scour the internet, ask tons of questions, and lean on my own mother, who is a special needs educational director. This enabled me to empower Halsey to live life to the fullest. Halsey is now 22, a writer and philanthropist. There are days I pinch myself to see if it’s a reality. I’ve experienced the joy of watching her bud into a new season of independence with colleagues to surround her. Life, living, and raising a daughter didn’t match all the expectations I had. Halsey lives at home, and there are benefits to living in a multigenerational household. Caregiver flexibility through family in combination with our nurses grants her more independence. It allows this mother the freedom to celebrate milestones I couldn’t have imagined, without a bit of faith. #SMAAwarenessMonth #SMAAwareness #31daysofsma2020

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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.
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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.
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