31 Days of SMA: Logan Nantz

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by Kevin Schaefer |

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Day 7 of 31 Days of SMA Topic: A Mother’s Perspective This is Logan Nantz ( @here.for.hayden ) story: I’ve been wrestling with an ongoing thought that I can’t seem to shake, yet can’t bring myself to say out loud. But sharing the pain brings healing. Admitting my thoughts and feelings brings validity. The past 6 months have been the hardest of my life. Hayden has been heartbreaking. There it is. I said it. My sweet baby girl literally has broken my heart. The pain and grief and earth shattering reality that she brought as she stormed our lives with such an unexpected and devastating diagnosis has been an agony like no other. Yet somehow, the same little girl that shattered me into a million pieces has begun piecing me back together. Everyday I see her fight. I watch her claw her way through another “first”, another victory, another success. The old me is gone and the mosaic of who she is helping me become is beginning to come into view. And it’s beautiful. I wish more than anything I could go back to my 6-day postpartum self sobbing in the pediatrician’s office and tell her it’s going to be okay. It really is. This will be hard. It will break you. Everything that you had planned is no more. But God is giving you the opportunity to walk in a light that only He can shine. And while it won’t be easy, it will be beautiful. I’m ashamed to admit how broken this experience has made me. The things I’ve said, the thoughts I’ve had. But I’m confessing openly in hopes of bringing comfort to the next sweet momma. Planning for a maternity leave full of late night breastfeeding, afternoon naps and snuggles, not feeding tubes and bi-weekly blood draws and a lifetime of unknowns and uncertainties. It will be okay. You will be okay. We are stronger together. #hereforhayden #SMAAwarenessMonth #SMAAwareness #31daysofsma2020

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About the Author

Kevin Schaefer avatar
Kevin Schaefer Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, BioNews. He also hosts the SMA News Today Podcast. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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31 Days of SMA, Logan Nantz, Parents of SMA children, SMA Awareness Month
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