31 Days of SMA: Grief and SMA

Written by Kevin Schaefer | August 11, 2019

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Day 11 of 31 Days of SMA⁣⁣⁣⠀ Topic: Grief⁣ ⠀ ⠀ This is Dr. Jim Berry’s Story:⁣⁣⠀ ⁣⠀ One of the stark realities of being an SMA parent is that you have a child or children with a disease that will likely cause them to die. For many SMA parents, that reality strikes within months or just a year or two of the birth of their child. For others, like my wife, Becky, and I, that reality struck after spending nearly 22 years with our beloved oldest son, Carson. ⁣⠀ ⁣⠀ Carson was an amazing young man who battled Type 2 SMA all of his life and never allowed it to dictate what he wanted to do in life. He excelled in school, graduated from high school, went on to college to study Marine Science and came within 1 semester of graduating before his disease took him from us in December, 2018. ⁣⠀ ⠀ We miss Carson deeply everyday and not a day goes by when something doesn’t remind my wife, his younger brother (who also has SMA Type 3), and I of him. When you lose someone that you love with all of your heart, the slightest little thing will remind you of that love and the precious moments you had with your SMA Angel. ⁣⠀ ⁣⠀ My professional career has been in medicine, and as a result I learned long ago to be a realist about death. I know it can and will happen, even to those I love most, and I’ve always steeled myself to that inevitability. That hasn’t made me less vulnerable, less empathic, or unable to feel deeply saddened in the face of the overwhelming reality of losing a child. Rather, it has allowed me to be a rock for others in my family who needed that rock to lean upon in the face of the same loss. ⁣⠀ ⠀ We all must deal with grief and loss. The most important thing that we can and need to do is allow ourselves to take the time to grieve. Grief, like daily life itself, is like a roller coaster. Some days are going to be good days and some days are going to be bad days and they will go up and down, make sharp turns, and maybe even do a loop. ⁣⠀ ⁣⠀ I’m reminded of a passage, “ Grief never ends…but it changes. It’s a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith. It is the price of love.” ⁣Have the strength to remain.

A post shared by SMANewsToday (@smanewstoday) on Aug 11, 2019 at 10:29am PDT

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About the Author

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.