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What I Didn't Tell My Grandparents About My Kids' Medical Condition

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Here I am alone, on the way back from a trip to Florida visiting my wonderful and inspiring grandparents. You see, they are very optimistic and proud grandparents. But they are old, and I feel sharing with them anything that can cause worries is really not good for them.

So I lied.

When they asked about my children, I shared with them all the silly things they do. All their interests and their sibling fights. I told them what they want to do when they grow up.

What I did not tell them is that my greatest wish is that they will actually get to grow up.

I didn’t tell them about their innocent questions with their big eyes looking straight at me. Why is my liver sick? Why do my muscles hurt? Will I ever be able to run fast and be strong like Ben (their older brother)? Why are they checking my heart? Can my heart be sick, too? Will I always have to take cornstarch? Can they make this go away?

I did not tell them why I can’t visit them more often, and why bedtime stories are not read because instead we are making sure their little bodies have enough energy to get through the night.

I did not tell them when they praised my medical and genetic knowledge that it is from many research papers I have read to understand their disease a little better. So I covered up and smiled and hugged them a lot, knowing life is too fragile and just living the moment.

I did tell them how the boys’ eyes glow when they are hugged, how the house is filled with giggles and laughter. I told them about our whispers goodnight. I told them about their unique personalities and about the silly and special things they do. I told them about their dreams and their interest.

And now on my way back to Chicago, I am looking back at the so precious moments we got to spend together.

Mom of three children, mom of two children with Glycogen storage disease type 4.

Getty image by bernardbodo

Originally published: August 10, 2018
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