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To the Neurologist Who Diagnosed My Son With SMA Type I

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Twelve years have passed since my son’s Diagnosis Day (D-Day). However, I remember you for many positive reasons beyond that nightmarish moment in time when you told my husband and me about the terminal and degenerative condition called spinal muscular atrophy (SMA) type I that altered our lives forever.

Because of your initial guidance on D-Day, I am the parent and advocate that I am today.

You showed me early on how to take control of a seemingly hopeless situation. First, by allowing me to grieve the loss of what might have been regarding my son’s future. Then, by helping me focus my time and attention on the things I could pursue to improve my son’s overall quality of life.

When life suddenly upended on D-Day and didn’t make sense anymore, you grounded me to reality. You gave me direction and purpose as a parent and caregiver instead of merely telling me to go home, love on my child, and wait for his inevitable death, as projected by the prognosis. Thankfully, you offered alternate suggestions.

Through your words and actions following that fateful day and during follow-up appointments, God showed me that sometimes we could not change our circumstances, but we can alter our perspectives, which is equally useful. Why? Because life is not fair to anyone. To think otherwise is to set yourself up for failure. Life does not care if you are a “good” person or if you are a child.

It is people like you that help make the bad times more bearable and show others, like me, how to make the best deal out of the cards dealt them. Thank you for that. Likewise, thank you for showing me how to create beauty from ashes by rolling with the punches and picking battles I could win. Also, thank you for showing me how to navigate the medical and disability care systems to benefit my family in the here and now and the longterm.

You were more than just another medical provider in the long list of specialists that have taken care of my son over the years. To me, you were a guardian angel in disguise. I hope that others see and appreciate their angels on earth too. Regardless, Doc, may you and others like you get the praise you deserve today and always, now and in the future.

We (We being parents like me) see you, and we value you even if you and your peers don’t know it. In particular, I pray that you never worry about the legacy that you will leave behind because kindness is eternal, and I will keep paying it forward, as demonstrated by you. Thank you for being a person worth emulating.

Originally published: January 31, 2021
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