a mother asleep in the nursery due to myasthenia gravis and parenting

Raising Young Children While Managing Myasthenia Gravis

I have 2 children - a son who is 4, and a daughter who just turned 2. Life is nonstop with the demands of 2 toddlers. With them still dependent on my husband and me for their basic care, it has been a journey learning how to best take care of my family while managing myasthenia gravis (MG).

Finding help

I was diagnosed with MG a little over 2 years ago while I was pregnant with my daughter. We knew that the newborn stage with my daughter would be a challenge, so we found help.

We arranged to have a nanny stay with us for a month to help take care of the baby, as well as cook meals. Though it was an investment, we knew it was worthwhile in order to help me recover.

Communicating my needs

The new responsibilities of caring for a newborn on top of my toddler were a big adjustment. My son still needed my husband to be with him during his bedtime routine, so we were split between our children at the time I was the most tired.

During the first year of my daughter's life, the world suddenly entered a pandemic - something I never thought I would have to face in my lifetime. We were shut off from our community who we relied on heavily to help with childcare.

Our relationship was key to making it work. I had to learn to be more assertive about my needs, while also understanding what was on his plate.

Making it work at home

My son's preschool had also closed and both children were home. I really thought that I was going to have another crisis due to the stress of having 2 children home. However, I tried to make a plan and schedule to get through the day.

I enrolled my son in an online learning program and prepared different activities for him. One thing we tried to incorporate daily was an afternoon walk to get his energy out while I pushed my daughter in the stroller.

I often sat in a rocking chair in their room and watched them play. Though they would continually ask me to play with them, I would let them know gently and firmly that mommy was tired.

I learned that my presence was more important than my ability. With worn out and sleep-deprived bodies, my husband and I made it through the pandemic with young children, learning to fight, forgive, and move forward. We learned to have grace for one another, trusting that each person was doing their best.

Intentional decisions

This summer, my husband and I decided to place our children in preschool. I thought I could handle taking care of the kids at home as a stay-at-home mom, but with MG and being a highly sensitive person, it was too much for me to handle. I felt overwhelmed and exhausted every day.

Once I felt strong enough to work again, I started a part-time job. Being able to work from home while my kids were in school for most of the day has been a much better rhythm for me. I am happier, and I know they are happier as well.

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