Celebrating my daughter’s perseverance through adversity

Despite her struggles with HAE, Ladybug just keeps going

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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My legs were shaking, sweat was pouring down my face, and, because of the previous 24 minutes, my lungs were gently alerting me that a puff from my trusty inhaler was imminent.

My laid-back trainer casually discussed his new media content endeavor as I executed a wall sit at my gym. While the exercise might look easy, this was the third cycle of it I’d had to endure for an entire minute.

Many thoughts went through my head. This particular day at the gym was rough for me. My week had been busier than usual, and I hadn’t gotten much sleep. I was due back at work a little later that day. Still, before this moment, I’d glided through my other workouts with the right amount of challenge to “feel the burn.” But the wall sit exercise was very close to ruining my feelings of accomplishment.

I had no idea how long I’d been against the wall, but I was exhausted and ready to quit.

“You’ve got this,” my trainer finally said. “You’ve made it 45 seconds; you can get to the end.”

And I did. I made it to the end.

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Unlike most days at the gym, this one felt special because I’d pushed through what felt like the most challenging thing I faced that day. That made the completion even more special.

It’s a type of perseverance I learned from my daughter.

Just keep going

Normally, at this point in my column, I’d segue into the history of our oldest daughter, whom we lovingly call Ladybug, and her diagnosis of hereditary angioedema (HAE), then tie it into whatever challenges we’re facing or what I may have learned in recent weeks. But this week, I’m just grateful for her perseverance.

Before we knew what HAE was, school became overwhelming for Ladybug. She accrued countless absences, mountains of makeup work, and missed tests, and we were lucky if she made it a whole week without an emergency room or hospital visit.

She sometimes begged me to let her go to school, even though I knew a flare was coming. She wouldn’t alert me that she was feeling bad so she could finish the day, or she’d hide symptoms to avoid missing presentations or test days.

Ladybug kept going through sore legs after Takhzyro (lanadelumab) shots, sore hands from the butterfly needle used for Berinert (human C1 esterase inhibitor) infusions, and sore forearms after her Xolair (omalizumab) shots. She kept going.

Were there tears? Yes, hers and mine. It was seldom easy. Sometimes she pushed, and we pushed back; sometimes we switched roles. But she kept going. Whether she was signing in on a school laptop from the fourth floor of the hospital’s pediatric floor or her dad was helping her with a math problem on her makeup work at midnight, Ladybug was determined to keep going.

On Wednesday morning, all her hard work and perseverance through adversity led to an amazing finish: her eighth-grade graduation from her fine arts school. Yes, we cheered as if she were graduating from college because of everything she’d been through to get to that moment.

My one-minute wall sit pales in comparison with the battle Ladybug has faced for the past nine years.

And because she kept going, even when it was hard, this milestone is that much sweeter.

Congratulations, my sweet Ladybug.

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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