a grandparent with myasthenia gravis bakes cookies with their grandchild

My Youngest Grandson's Opinion About My MG

Our grandsons were over visiting and they were asking to go outside. What they really wanted to do was ride the dirt bike. They know another adult has to be there besides Grandma, since Grandma isn't always able to get out or help them with the dirt bike if needed.

This has been a big change for them because Grandma was always able to do anything with them ... but not this last year and a half.

A child's observation

While talking to our youngest grandson (8 years old), he informed me that he knew all about myasthenia gravis (MG). I did not have to remind him what I had and he knew the proper way to pronounce it.

So I said, "Q, what can you tell Grandma about myasthenia gravis?"

"Well Grandma," he said, his eyes sparkling being able to tell me all about my MG, "First off, I know that you have muscle problems and problems seeing. Oh! But ice helps your eyes when you can't see... and you know, it gets big."

As, I tried not to laugh I said, "No Q, I don't know ... what gets big?” He said, "You know grandma." Then he started rubbing his tummy! I wanted to burst out laughing and I had tears in my eyes. After composing myself, I responded, "You are correct!" Little did he realize that was weight gained from the Prednisone.

After a short while, we were talking about me writing articles for Myasthenia-Gravis.com. Q, with his eyes sparkling all over again, said, "Grandma, I have always wanted to be a writer my whole, whole life. I'm gonna write you an article so you can see how well I can write, cause, I know a lot about myasthenia gravis. I can go into much more detail in writing than I can in talking."

grandkid writes on paper

What it is like to be her grandson

Here is Q's article about my myasthenia gravis:

For most of the time, I can't go outside because her eyes are closed. And if it's too hot out or if her eyes are closed, nope, can't go outside. We go do chores and help her when we can. Sometimes Grandma can't even do that because the myasthenia makes all her strength go away, and sometimes there's other things.

grandkid peers outside the window

And like today we are with Grandma. My grandpa and my uncle are out chopping wood. Grandma had to go take a nap. When she woke up, she had to take her medicine again. Sometimes when you're in a conversation, her eyes will just close. Ice cubes will open her eyes and she can see - it's like magic! And that's what a normal day there is like.

grandkid gives grandparent ice cubes

I built a giant fort out of pillows and got a radio - it is awesome! We have a dirt bike there, it's an awesome part about it being at Grandma's.

So, if you have myasthenia gravis, take naps because you feel better when you wake up. Always take your medicine if you have it because ... well, it works. It's highly recommended by me, cause I know it works!

grandparent and grandkid taking naps

Remember laughter is good for us all!

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