31 Days of SMA: Being a Parent Who Has SMA

Written by Kevin Schaefer |

View this post on Instagram

Day 8 of 31 Days of SMA⁣⠀ Topic: Being a parent with SMA⁣⠀ ⁣⠀ This is Melissa's Story ⁣⠀ ⁣⠀ Being a single parent with SMA is probably the toughest job I’ve ever had but not for the reasons you think. You see, being a parent, let alone a single parent, comes with its own struggles and challenges but when you add having a disability like S.M.A. into the mix, there is a whole new level of struggles and challenges that appear which mostly come from societal judgements. From almost the time of my daughter’s birth, I’ve had to deal with people either judging the fact that I brought a child into the world or staring unbelievingly at me when I mention that I’m a mother. Unfortunately, we live in a society which views people with disabilities as second class citizens who can’t possibly have a normal life experience. The funny thing is, I would be raising my daughter the exact same way that I am today even if I did not have S.M.A. She would still be raised to be an independent child with rules and responsibilities; my disability has -nothing- to do with the way I am raising her.⁣⠀ ⁣⠀ ⁣⠀ Since becoming a mother and facing this new level of judgement, I’ve worked hard to try to change people’s perceptions of motherhood by a mother who happens to have a disability. For example, I have made sure that I always have a “presence” at my daughter’s school whether it be helping in the classroom, helping with school events, or volunteering to conduct fundraisers for the school through my Avon business. I feel as a mother with a disability it is important that my daughter’s peers are exposed to a person with a disability doing the same things their parents do. Now, this presence hasn’t always been easy – there have been accessibility issues, judgy parent issues, and winter weather issues to name a few – but I’ve always tried my best.⁣⠀ ⁣⠀ ⁣⠀ Ultimately, it is my hope that my daughter’s generation will become adults who are accepting of people with disabilities in their every day life as the “norm” rather than an “exception.”

A post shared by SMANewsToday (@smanewstoday) on

Kevin Schaefer avatar

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.

Tags

caregivers living with SMA parenting SMA Awareness Month
Doctor finder promo


Recommended reading