31 Days of SMA: Grief and SMA

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by Kevin Schaefer |

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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.

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