As an advocate for the multiple sclerosis community, people often ask me what it’s like being a mother while living with MS. My quick response is, “Joyous!” But I understand the questioner is looking for something more.
They want to know how to manage fatigue while caring for an infant, how to keep up with an energetic toddler, or how to be a mom while also managing the responsibilities of being a wife, daughter, caregiver, friend, employer or employee, school volunteer, and so on.
While all of these questions are equally important, my husband and I knew from the start that the most important question for us to discuss as parents-to-be was: How could we raise our child to see no difference between an able-bodied person and a disabled one? How could we teach him the importance of tolerance, compassion, patience, and understanding in a world that is in dire need of it?
That might seem like a tall order but not an impossible one. After all, babies are born with no opinions, points of view, or motives. They are a clean slate, ready to learn lessons from their parents before they begin the process of socialization.
We felt strongly about our responsibility to teach our child that equality is not only a concept but a necessity. If we were going to do anything right as parents, it would be to teach our child that my disability is part of who I am, just like my curly hair and green eyes.
We didn’t want to shield our child from the struggles and disappointments I was to inevitably face during the course of my disease. We’d teach him that adversity is a part of life, and through my example, he’d learn how to face anything that might someday come his way with courage and a positive attitude.
Early on, I took our son along to appointments with my neurologist. The staff and medical team at the MS center were like a second family. Other patients felt at home too, and I’d often find them in the center’s library, shooting the breeze or reading a book. Over the years, our son became familiar with them. I enjoyed watching his ease around wheelchairs, canes, and scooters. This was particularly sweet since I clearly remember my Girl Scout troop visiting a nursing home and feeling uncomfortable around someone in a wheelchair. Shame on me.
Multiple sclerosis can also be an invisible illness, and our son began to understand that one person may use an assistive device while another used none, yet both fight daily battles that are unseen but real.
We also wanted him to know the importance of being respectful and intuitive. This was never more apparent than when he was 6, and we attended a dedication ceremony for the anniversary of our MS center. The speaker was a local celebrity, and as he spoke, our son gently let go of my hand. I watched him walk over to a man, a fellow patient, who sat alone in his wheelchair. The man looked rather sad. I watched our son climb up into the man’s lap, put his little arm around his shoulder and gently nestle his head against the man’s. The man smiled and hugged my son. It was a magical moment.
I later told my husband we were doing something right and that our son knew the man was sad and wanted to make him happy. He saw no difference between ability and disability. He just needed to make someone feel better.
It is my hope that the world will someday be a place where society treats everyone fairly and equally. Where children are taught that people with disabilities are not lesser in status, and that our grown children will teach their children the same. And so on and so on.
As a mother and a person living with a chronic illness, that idea warms my heart. When the next person asks me what it’s like living with MS and being a mother, I’ll be sure to pass that along.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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