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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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