Now I know why my parents were so exhausted

Adult me would love to go back in time and stop the moment, but 7-year-old me was determined to snap what I thought was the most hilarious picture of my parents.

During the summer of my eighth birthday, my parents took my sister and me to Walt Disney World. This five-day, four-night vacation was meant to be fun and relaxing, and it was. By day, we were weaving through fairly light crowds at the Magic Kingdom and Epcot, and by night, we would swim in the hotel pool, hang out, and finally sleep.

So imagine my surprise when my parents were exhausted by the time we arrived home. How could they be exhausted? I was so startled by their insistence on sleeping late that I snapped a picture with my Barbie camera.

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While that photo makes me chuckle now, I can’t help but feel a full measure of empathy for them.

When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema, we were in the hospital a lot. During her initial diagnosis, with no access to at-home maintenance or emergency medication, we had to fully rely on the hospital to alleviate her flares.

Although Ladybug wasn’t a fan of going to the hospital, incredible nurses, therapy animals, games, and her favorite snacks made her stays pleasant. She had favorite doctors and other medical staff, the TV in her room was on her favorite channel, and the children’s coordinator staff would often come in and engage her.

I, on the other hand, was exhausted, barely making it home and immediately collapsing into bed once I knew she was comfortable.​

“Why is Mommy so tired?” I heard one of my other kids ask my husband after a particularly lengthy visit. It was a harmless question. To them, all Mommy did was go to the hospital to watch Ladybug. How hard was that? And, admittedly, I wondered the same thing.

It wasn’t until I saw that photograph of my parents post-Disney that I finally realized what was going on.

While my sister and I had the most amazing experience, my parents had been staying up late, getting up early to plan the day, making sure their 14-year-old was entertained, and chasing a curious 7-year-old down Main Street when I’d wandered into the parade. On top of all of that, they’d driven 12 hours, both ways, to Orlando, while my sister and I slept comfortably in the back seat.

They were exhausted because we experienced two different Disney Worlds.

Hospital stays with Ladybug are anything but restful. They’re filled with discussions with hospital staff, high alerts when medicine is being given, late-night and early-morning conversations with doctors, and monitoring her sleep to ensure comfort. I often come home from the hospital with only two hours of sleep over the course of several days.

While her trips to the hospital are less frequent now, I can’t say that my execution has changed. I want those trips to be pleasant, and as a caregiver, I understand that this may sometimes affect my own experience. What’s important is the grace and time I give myself afterward, and the joy that comes in knowing she’s had a good experience.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.