To work or not to work is the question for the summer

For lack of a better phrase, and at the risk of sounding cliché, a summer job for a teenager is a time-honored tradition.

It’s such a well-known trope that shows like “Saved by the Bell,” “The O. C.,” and “Stranger Things” have entire seasons dedicated to following teenagers as they navigate the comedy or drama of summer employment.

Whether the characters were saving for a car, wanted to help their families, or simply needed to get out of the house, summer work is presented to every generation as a significant milestone.

Even in our own house, my husband and I will often tell our children hilarious stories of our “summer of high school” work situations. And while my husband, Paul, and I never made it a requirement, we noticed that our two oldest children started asking more questions.

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Two years ago, I didn’t flinch when our oldest son found a job at age 17. But when our oldest daughter, whom we lovingly call Ladybug, expressed that she wanted to work last summer, every alarm in my brain sounded.

When Ladybug was diagnosed with hereditary angioedema (HAE), the one thing we were never prepared for was the unpredictability of her flares.

Sure, we could avoid certain triggers or even get a bit of a heads-up that they were coming, given her recognized prodromes. But the length or severity was something we could never predict.

There are other times when, no matter what we do, or how quickly I get her emergency meds administered, or how consistent we are with a preventive shot, a significant swell can last longer than anticipated, or worse, cause an extended hospital stay.

‘Do you want me to work?’

Last summer, it was no big deal. Ladybug got a great gig as a junior counselor at our church’s summer day camp in our city. Because everyone is well informed about her complicated medical status, the few times she couldn’t come to work, and the one hospital stay, were accepted with well wishes and complete understanding. Ladybug still had a job even though her attendance couldn’t be consistently guaranteed.

But toward the end of this past school year, she expressed interest in working at a “real place” or a “real job” like some of her friends. The news that her favorite restaurant was hiring made her excited, but me? Not so much.

“Do you not want me to work?” she asked me one day after I rebuffed her inquiry about picking up an application.

I had to be honest with her. While the camp job at church had been amazing, missing a shift at a “real job” could be met with less understanding. Her favorite restaurant may not understand her calling out at the last minute, or leaving early, or missing a week. Sure, in theory, we could turn in all the paperwork to show she isn’t some flippant teenager bowing out of responsibility, but that doesn’t necessarily bring about understanding. In fact, it may lead to not being scheduled, or worse, termination.

Usually, at this point in the column, I share the “aha moment” that leads to a solution everyone is happy with. I don’t have one of those for this situation. She’s still searching for employment that will “understand HAE.” And in a twist of irony, at the writing of this column, I had to dose her with Berinert in the wee hours of the morning, which means the rest of her day will be filled with resting and recuperating.

And she’s not even working yet.

As a caregiver of a child with a chronic disease, there is no manual that helps navigate this trial-and-error part of life. Sometimes, significant milestones and time-honored traditions have to be amended. So, no, Ladybug’s summer employment may not look exactly like that of her friends. However, I’m learning that to a teenager with HAE, even an amended milestone still counts.

​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.