As A Mom With MS, I Struggled With Crushing Guilt

And then I got a text message that dissolved all of my self-doubt.

by Lindsay Karp
Parenting & Disability

On June 7, 2017, I received a text message from someone I barely know — and I plan to save it forever. His words showed me my worth as a mother with multiple sclerosis (MS) when I couldn’t see it myself.

A month before receiving this text, I had finally learned the disease I’d been struggling with for 13 years was MS. I’d been unable to independently care for my children, who were then 5 and 2, since my youngest was an infant. When my husband was working, a nanny filled in where I was lacking. I was there, physically, to hug and love and snuggle my boys, but she took them on adventurous walks and playfully chased them on the playground, helping them explore autumn’s colorful leaf piles and winter’s snowy hills. I’d wallowed in immense guilt while watching someone else prepare my children’s meals and play their favorite games as I lay on the couch unable to participate. Those years when I searched for a diagnosis and doubted my parenting were the lowest point in my life.

That year, my 5-year-old son rode a van 6 miles to school every day. He was the only passenger. Each morning, the driver arrived ready to submerge himself in conversation with my inquisitive, loquacious little boy. Apprehension was written across my face in bold as I parted with the thing most precious to me in the world. This driver knew I was a mother, protective of her son, as he watched me check that the seatbelt was secured tightly around him, but he didn’t know that he was driving my son to school because I couldn’t do it myself.

Each morning, another layer of guilt settled on my shoulders.

My longing for independence and my protective nature made this a most imperfect situation. I wanted to drive my son to kindergarten myself — to walk him into the unfamiliar building and to kiss him goodbye each morning. The thought of placing him in a van, under the care of a stranger, vulnerable to an unknown driver, made my insides churn. Each morning, another layer of guilt settled on my shoulders.

By the end of that school year, I was at a pivotal moment in life. Having endured some of my darkest days without a diagnosis — and no medicine to tame my symptoms — I was now receiving treatment. It was bittersweet; I felt relief at finally having an answer, and grief over a diagnosis that was irreversible. I’d suffered the overwhelming weight of struggling to get around my own home. The discrepancy between my former body and my current one was glaring; my disability a loud reminder that I wasn’t the parent I’d hoped to be.

But with the vibration of my phone that late June afternoon, my doubts dissolved:

“It was my pleasure driving [your son] to school this year. He and I had some very interesting and animated discussions during our times together. He is quite a fine young man and I wish him all the best for a prosperous future. You should be very proud.”

I read the text repeatedly. They were the words I never knew I needed — the validation that dissolved years of motherly guilt in an instant. All the preschool events I’d missed, every walk to the playground without me, and each time my children had asked for their mother as I rested my weary body at home, suddenly became insignificant. My children were OK despite my limitations! Finally, I felt some relief.

With those words across my phone, the guilt that had stacked up towards the sky began to evaporate into the atmosphere. Despite parenting with a limited physical capacity, I was still capable of raising my children to be well-adjusted and respectful. All year, this gentleman had engaged my son in conversation — they’d conversed about family and holidays and Daniel Tiger and YouTube and likely all the embarrassing details of our home life that kids tend to reveal in the most innocent of ways. He now knew my son arguably as well as a good friend and he was impressed with who my child was becoming. I was a disabled mother but my love for my son superseded anything else in my world. When that text came through, I finally knew that was enough.

Someone I barely know said the words I needed to hear to let go. I was finally able to focus on the start of my MS treatment — medicine that eventually gave me the ability to be an independent mother for the first time.

Five years later, this text message remains on my phone. Often, I scroll down to read the words that changed my life, the message that continues to prove my physical limitations don’t impact my ability to be a mother. Because our physical abilities aren’t commensurate with our parenting abilities — and every parent with a disability deserves this reminder today and always.

Lindsay Karp is a freelance writer with a background in speech-language pathology. She writes about parenting, life with MS, and everything in between. Her work has appeared in The Cut, TIME, Salon, Newsweek, Insider, and other outlets. Follow Lindsay on Twitter @KarpLindsay.