As caregivers, we tend to forget what’s not normal for others

I grew up in a musical family.

Because my mother was a voice teacher, piano prodigy, and arranger, and because my father is a first tenor (who recently retired from directing his choir after 50 years), my sister and I grew up in an environment where music was always prevalent.

Whether my mother called us into the living room to sing around the piano or when we sang in four-part harmonies in the car, there was always a tune brewing somewhere.

Family dinner was sometimes my favorite part of the day because it wasn’t unusual for someone to start a tune while passing the green beans, and suddenly, we were in an entire song. In fact, when my parents had huge family and friend gatherings, everyone was expected to participate in our “sing for your supper” tradition.

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One evening, our family was invited to a large dinner party at someone’s house. While our parents sat in the dining room with their friends, my sister and I were at another table with a slightly younger crowd.

When someone at our table made a reference that matched some familiar lyrics, like “muscle memory,” my sister and I broke into the harmonious chorus of a famous song.

“It’s not polite to sing at the table,” one of the guests said.

Technically, they were correct. According to some etiquette rules, singing or whistling at the table is rude. But singing at the table was typical of our family.

I’m still learning that what’s considered normal in our family isn’t normal for others.

Keeping ‘outsiders’ in the loop

When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), we were quickly forced into a series of new normals. From biweekly subcutaneous shots of her preventive medication to at-home intravenous infusions of her emergency meds, we fell into a rhythm that was part of our everyday routine.

We even have a hospital plan for Ladybug’s admissions. We have special bags, chargers, pickup and drop-off plans for the twins, and even a dinner menu plan that’s easy to implement for whoever is home.

However, some friends and family who don’t live with us can still be alarmed when they hear that Ladybug isn’t having a good health week. Even this past week, when I was on the phone with my brother, Ezra, I mentioned that these days might turn into a “hospital week” and quickly moved on to another subject.

“Back up,” he interrupted, “what’s going on with my niece?” For which I had to pause and explain what was happening.

I have other friends who have gently mentioned that when I gloss over the fact that Ladybug is in or on the way to the hospital, it’s alarming, and they’re immediately worried. Some feel called to invisible action to want to help while others are startled I didn’t call to tell them.

The truth is, I don’t think about it anymore. That’s our life, our everyday. But just because it’s routine to us doesn’t mean I should expect it to be normal for everyone else.

As caregivers of loved ones with rare diseases, we too easily forget that what comes second nature to us is often jarring to people outside of our rare disease community. We should make an effort to include the “outsiders” so they can process the information or know how to help.

And maybe, as we continue to educate and include others as we navigate our journeys, “singing at the table” won’t seem so rare.

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.