Lessons I Learned as a New Mother That Will Help You Live a Better Life with MS

I can barely remember a time when I didn’t have MS, when I didn’t feel exhausted after waking in the morning or how it felt to stridently walk for miles without tiring. I can’t remember what my right leg feels like or how it felt when I didn’t have a tremor that might involuntarily type for me.

My son doesn't remember either

My son also doesn’t remember a time when I didn’t have MS. I’ve had the disease longer than he’s been alive. He’ll be 26 this year and I’ve had MS for over three decades, so he was born knowing Mommy is usually tired and has to take life at a slower pace. He knows all about MS and has even participated in some videos that aired on television and around the medical community on how our family copes with my illness.

He’s a strong, courageous and loving son who I am proud of every day.

In the early days of motherhood, I was worried how we’d bring him up, how a child would feel about having a mom who couldn’t perform the same activities other moms could. Running, playing tennis, taking all-day hikes were off the table.

The guilt as a mother with MS

There was also the guilt I felt about being physically unable to keep up with him. I wanted to be Donna Reed, Carol Brady and Marion Cunningham all wrapped up into the best mommy the world ever saw. I know these are fictional characters but it’s how I wanted to be. I dreamed about putting MS on the back burner, just forgetting I had this unpredictable disease that took away my ability to be my old self. I wanted my son to learn firsthand about strong, vibrant women and to learn through my example.

Missing out on memories

Every time I said I was too tired - and I tried my best not to say that often - my heart grew heavy. Twice when I was on steroids due to difficult exacerbations, we were leaving for vacation to visit family. My husband said he’d cancel, but I insisted they go. I remember lying on our couch for several days, alone with our cats, crying inside because I missed my boys and I cursed my illness.

There is no rewind button on life, and I was missing quality time with my little boy. It was breaking my heart.

What I have learned

Now that I’m older I’ve learned a few things since those early days of motherhood:

  • I learned I’m stronger than I know and because of that my son is strong now, too. He watched my resilient spirit, learned from it, and then made it his own. In his adulthood, I’ve seen his resilient spirit soar many times. I’d like to think that in some small part that might be due to me.
  • I know there are things in life we can’t control. What we can control is our perspective and goals. When I advocate for others I tell them to set new goals within the abilities they still have. That’s something I learned and it’s why I preach it to others.
  • I look back at the younger mother I was and think of the heartache I put myself through. I can’t blame myself for it, I wanted what other mothers had - good health. But I needed to set new goals within my new abilities because that could have helped me communicate what I needed. If I could re-do those vacations, I would have said I wanted to go on vacation but needed some extra help with wheelchairs at the airport, a quiet room to nap and the flexibility to sit when I needed to as we were touring around. I was timid back then and didn’t want to trouble anyone. Today I use my voice to tell others what I need.

I’ll never get that time back with my son, but I sure as hell won’t miss any future opportunities.

I hope you’ll always use your voice and live every moment within your abilities. Life is short and we only get one shot at it. Give it your MS best.

“Your child will teach you more than you’ll ever teach him.” ~Anonymous

“What seems to us as bitter trials are often blessings in disguise.” ~Oscar Wilde

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