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


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


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