My husband and I try to shelter our daughters from my chronic disease. We try not to talk about my health problems around our girls. But they know. They see it. They see me take a bite of a cracker and then become violently ill. They notice when I’m so sick I sleep all day, unable to get out of bed. They see me constantly on the phone with doctors, having my nurse come to the house to care for me and being driven from appointment to appointment. They know how to help me hook up my port to fluids and total parenteral nutrition (TPN). They each have their special jobs they can do.
It breaks our heart to know that they have so much stress and worry at such a young age. Questions my husband and I have fielded are, “Is Mommy going to heaven soon?” “Will Mommy be able to watch me at my dance recital?” “Why won’t Mommy wake up?” “When is Mommy coming home from the hospital?” “Why are Mommy and Daddy always gone? Why do we always have to sleep at Grandma and Grandpa’s house?”
When it comes to going out to dinner at a restaurant, my husband and I still feel awkward when it’s time to order. What do I say when the server asks me what I’d like to order? When I say, “Nothing for me,” do I explain that I can’t eat, or do I just leave it alone? Will the server be mad I’m taking up a table but not buying anything?
Well, in this certain instance, I said I wouldn’t like to order anything. The waitress said she’d have to talk to her manager because since the restaurant had entertainment, he would probably make me pay something.
Finally, the manager came over and said he would have to charge me for a kid’s meal. I calmly responded, “But, I’m not eating anything. I’m here to be with my kids.” The manager then replied, “Well, eating or not eating is a choice. I’m charging you for a kid’s meal.” My 4-year-old daughter suddenly turned to the manager and said, “I don’t think you understand. My mom has gastroparesis. She can’t eat or drink anything because it makes her sick. She has a port right there under her shirt and TPN goes in it. TPN is her food. If she eats, she could have to go to the hospital again. I really don’t want that to happen.”
My husband and I looked at each other with wide eyes as our jaws dropped. How did she know all of this? Did our sweet 4-year-old just leave a grown man speechless?
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