Motherhood and Myasthenia Gravis

When I feel better, I want to:

• Take my children to the park.
• Take my children out for a daily walk.
• Read to my children every night.

This was the wish list I made as I lay bedridden with myasthenia gravis. These simple activities that were normal routines for most families felt impossible for me.

I felt like I failed

I had constant double vision and did not feel safe driving. When I did have enough energy to take my toddlers for a walk, I was anxious about whether I would make it back home.

My neck was so weak, I could not hold my head up enough in order to read books to my children. When I tried to speak, my voice sounded nasal and weak.

I felt like a failure as a mother. Simple tasks that seemed like a crucial part of family bonding were out of the picture with myasthenia gravis in full force.

Redefining success

As a previously ambitious person, I lived a busy life. I took my toddler to different activities and experiences. I met with other moms and planned weekly playdates. As a mother, I wanted to be a step ahead of my children's needs.

When I was pregnant with my second child and diagnosed with myasthenia gravis, everything changed. I could not keep up with the life I had built. In the pain of change and transition, I felt lost.

My priority became taking care of my failing body. Though my family and friends stepped up to care for my children, I slowly slipped into hopelessness.

What broke me out of my depression was when my husband gently told me to redefine success in this season.

Learning to be present

As I thought about my definition of success, I realized how many expectations I had placed on myself over the years.

A good mother should always have a clean house, home-cooked meals, and a happy husband and children. These unrealistic goals were weighing me down.

I decided to redefine my success day by day. Success looked like getting out of bed. Success was just being with my children, not doing everything for them. It was getting through the day. Though exhausted, being present with my life and circumstances. Success was living with a glimmer of hope.

Reaching remission

In May of 2021, I finally reached medical remission. I gradually checked every item off my wish list. I drove my children to the park, walking with them as they scootered. Tears welled up in my eyes as I watched them laughing and running on the grass and on the playground.

I started changing diapers again, giving them baths, and reading books before bed. As I returned to my normal routines, I tried to keep the lessons I learned in mind.

Success is not defined by societal standards and expectations. Success is just being present and true to myself in every moment.

A new approach

I am learning to model this lesson for my children in hopes they can live this out better than me. Myasthenia gravis has changed my life and approach to motherhood.

Though this has been the most difficult season of my life, I have come out with beautiful lessons I hope to pass on to my children.