A lived example helped me better understand my daughter with HAE
Passion makes it difficult for Ladybug and me to pace ourselves
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One of the amazing perks of the organization I work for is that it often partners with the theater production company I own.
Prior to the director’s tenure there, I’d been commissioned to produce many plays for him over the last 14 years. So, when he started this new position almost five years ago, it seemed like a natural fit.
With more actors and performers than backstage team members, I don’t think twice about stepping into other roles. At times, I can be a costumer, a band director, and a stage manager during a show’s run. It’s a rhythm I’ve been used to since my company’s inception.
However, with this new partnership comes a frequency I’m still adjusting to. Instead of doing one show a year, I average three. This means I get about a two- to three-week break before pre-production begins for the next show. Yet, the older I get, the more my body signals that I need longer downtime — signals I usually dismiss.
Last year, that turnover left me exhausted in ways I didn’t expect. After I wrapped my last show of 2025, I realized that because my next show was in February 2026, I had inadvertently restarted the pattern of the immediate turnaround.
“I am exhausted,” I told my husband one evening after returning from rehearsals in late December.
“You know,” he said as he embraced me, “you can control how many of these you do.” He was right.
“I know,” I replied. “But I love doing it so much.”
He kissed my forehead and smiled. “Now you understand how your daughter feels.”
Cue the epiphany of 2026.
The greatest lesson
When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema, we began the very slow process of understanding how physical activity can often be a trigger.
It took a while to learn that just a few days of intense activities at recess or in physical education could earn her days home from school. Even after being cleared to use her emergency medication at home, it wouldn’t help us if it were “Volleyball Week” or even the dreaded Field Day.
As she got older, tech week for dance shows became the culprit, and in a mistake on my part, shadowing me during a conference weekend landed us in the hospital 24 hours later.
For years, my husband and I have waved the “pace yourself” banner at Ladybug. We’d beg her to pause when she felt tired, or at a minimum, take small breaks to keep from overwhelming her body.
“But I love doing it,” she replied one day.
I chuckled at the irony that my husband had gently revealed. Sometimes the greatest enemy isn’t the big, scary external activity, but our love for the passions that drive our hearts.
I’m still learning how to live the “pace yourself” example for Ladybug. But knowing how difficult it is for me at 45, I understand her even more.
For caregivers, understanding our loved ones through lived examples can be the greatest lessons, even if they are just for us.
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.
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