Having Kids and Juggling Parenthood With Myasthenia Gravis

Parenting is one of the most rewarding, stressful, happiest, saddest, traumatizing, and special things that a person can experience. It comes with its own ups and downs and whole new learning experiences. But at the end of the day, it's something I wouldn’t trade for the world. That being said, adding in myasthenia gravis definitely makes things tricky, but it’s all about finding the right balance.

My family and parenting with MG

I have a 14-year-old, a 9-year-old, and a 3-year-old, so needless to say life is always moving fast and comes with unexpected everything you can imagine at this point. I was perfectly healthy when my oldest was born, however I experienced my first symptom (double vision) when my middle baby was 8 months old. It definitely threw a twist into motherhood I was not expecting.

Getting diagnosed while my kids were young

Everything I had learned and knew had to be relearned, but absorbed into the new life I was now about to take on. There were several days that I was too weak to pick the baby up, so her dad, my oldest, or my parents would have to help.

There were days I definitely took advantage of her nap time while my oldest was at school. There were some days I just laid there soaking it all in that she was my baby and I wouldn’t let this disease beat me.

As the years went on, my oldest didn’t quite understand why I could chase him through the yard for hours on end, and then boom! Everything changed. So, I introduced him slowly and in terms he would understand about MG. It helped make the transition a lot smoother.

As far as my second baby, she never knew anything other than mommy in an eyepatch. But again, I could play outside or wherever for a while but not like I could before MG. I then introduced her slowly and, in terms she could understand. Same ordeal with my last baby, she doesn’t quite understand but I tell her mommy has a boo boo or something similar and I get the biggest hug. It’s her simple reassurance that she understands.

Managing day-to-day life

As far as day-to-day life goes, it fluctuates and I have to determine where I put my energy. For instance, if one of the older kids has a sporting event or something at school, I ensure that I am rested up and ready to go so that I can push through and enjoy them.

I make sure no matter what, I am in attendance for my children because at the end of the day they are my reasons and my pride and joy. There are days in the home where sweeping feels like I am dragging a semi-truck around, so instead of forcing myself to fight through, I designated certain chores for them. It makes for a very smooth system to help reserve energy.

We’ve gone on several vacations, and I make sure the night before I get plenty of rest. Then on the first day everything is pretty minimal to ensure I do not have a major flair up or crisis. After that we enjoy ourselves, we make the same memories I would even without MG.

Going through pregnancy with MG

Now looking at the side that is most stressful, is pregnancy. I can speak about pregnancy with MG because my last baby was during this tornado of a disease. It was stressful, but frankly what pregnancy isn’t in one way or another!

However, I was properly monitored with my neurologist, OB/GYN, and the OB/GYN specialist. It made my pregnancy a lot smoother and less stressful. For that, I am thankful, without that team behind me I’m not sure how I would have handled it.

I will say during the time in the hospital, I was a nervous wreck but the team during birth was even more amazing. After she was born, she was examined thoroughly by the NICU and she was all clear of neonatal MG. During recovery, the team on that side had my back and made sure my MG was stable. They definitely stayed up to date and right on time with all doses of Mestinon.

At the end of the day, parenthood is probably the most stressful hoods many of us will walk through. But it is an absolutely wonderful journey, even with MG. It is just all about finding the perfect balance that fits your MG. It doesn’t happen overnight, it doesn't always look picture perfect, but I will say it is nothing but fun and memories.