Navigating Marriage as a Caregiver to a Child With Hereditary Angioedema

I placed the final piece of clothing in my overnight bag and zipped it shut. Although we were still about 48 hours away from check-in, I was over the moon about the “staycation” my husband, PJ, and I had planned for Valentine’s Day.

This particular romantic getaway was years in the making. With four school-age children and ill-timed school Valentine’s parties, one of them had managed to get sick with the flu either on or immediately after the heart-filled holiday for seven consecutive years — thus causing the instant cancellation of candlelit dinners, dreamy lunches, and heartfelt gift exchanges.

But on Feb. 12, 2018, I was excited. With Valentine’s Day falling on a teacher workday and the schools deciding to celebrate on the 15th, my husband planned a beautiful evening complete with dinner, a movie, and a fancy hotel room to end the night.

Finally, we would get some much-deserved time away.

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A soft knock on our bedroom door pulled me out of my romantic daydreaming. And the moment our oldest daughter, whom we lovingly nicknamed Ladybug, entered the room, I was crestfallen.

Her face was ominously puffy, and she uttered those four words that had become frequent in her young vocabulary: “I don’t feel good.”

Hiding my disappointment, I told her to go lie down, assuring her that I’d help her in a few minutes. When she left the room, I called my husband, explained the situation, and told him to cancel the hotel. Although we had no idea what we were dealing with, we both knew what would happen next.

Sure enough, two days later, my husband wished me a happy Valentine’s Day over the phone as I sat feet away from her hospital bed.

Admittedly, I was frustrated. We weren’t just losing the special day in February, but anniversaries, date nights, and social activities with friends. It felt like every time we planned to do something together, this unexplained illness would plague Ladybug and thwart our plans.

When her doctor finally introduced the concept of hereditary angioedema (HAE) to us, I immediately went home and researched all that it entailed. There, staring back at me, were all of Ladybug’s symptoms explained.

The misdiagnosed gastrointestinal issues, the uncomfortable tingling in her hands, the facial swells — everything we could never explain during ER trips and previous specialist visits was as plain as the nose on my face. However, the different websites offered hope, information about at-home HAE therapies like Berinert and Haegarda, and the assurance that this disease I’d never heard of could eventually be controlled.

But all I saw was a future of canceled anniversaries, postponed birthday celebrations, and the inability to procure babysitters who would be equipped to handle Ladybug’s illness. I envisioned no more date nights, no more getaways, and no more romantic excursions.

“That’s it,” I said to PJ as I closed my laptop in defeat. “This is our life. We’ll never get any time.”

Ever the optimist, he put his arm around me and pulled me closer as the tears streamed down my face. He knew that I wasn’t upset with Ladybug, but the circumstances surrounding our situation.

“It won’t always be like this,” he soothed as he kissed my forehead. “So for now, we’ll learn how to take advantage of the time we have, when we have it.”

Soon, like skilled football players on a field, when my husband and I found an opening to spend time together, we’d take it. Sometimes it resulted in a late-night movie while one of our parents sat at our house. Other times, it was an impromptu lunch date when it was clear that Ladybug would make it through the school day. Or my personal favorite, humorously turning something as simple as grocery shopping into a date.

And on days we couldn’t get out, we enjoyed streamed movies, late-night talks over tea, and early morning conversations before the busyness of our day began.

This year, on Valentine’s Day, we sat across from each other at a nice, crowded restaurant and enjoyed our date. And I couldn’t help but wish that I could reach out to every couple struggling to manage caregiving and their relationships and let them know what we’d learned.

Yes, some dates still get canceled, some celebrations still get postponed, and some vacations have to be rescheduled, but learning to spend the time you have together, no matter how brief, is the best thing you and your partner can do for your relationship.

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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