Coming to Terms With Unrealistic Expectations After an HAE Diagnosis

Receiving a diagnosis doesn't necessarily mean that life will return to normal

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“We know that once the baby gets here, we’ll be able to establish a schedule, and we will be more organized and finally be able to get some rest,” the woman on the television said.

I laughed so hard that I thought my water was going to break. After going into preterm labor with my twins, my doctor put me in the hospital to stop the contractions. And being forced to be in bed for several days allowed me the perfect opportunity to watch my favorite TLC reality show, “A Baby Story.”

I loved the show before I was married or had children. I was intrigued by the couples navigating the eventual arrivals of their long-awaited bundle of joys. I would hang on their every word, be disappointed when things didn’t go their way, and celebrate when the baby arrived.

But by the time I was pregnant with our twins, watching first-time parents on that show was hilarious. Their lofty delivery goals, combined with their comical parenting plans, would often send me into belly-shaking laughter.

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‘Back in the Car, but Out of the Tree’: Addressing Medical Fears With Compassion

And this particular couple had become my favorite. When they discussed a birthing plan with their doctor, they had an extensive list of goals and requests. But the moment the woman had her first contraction, everything they’d planned went out of the window. When the baby finally arrived, both parents were exhausted and somewhat surprised that labor and delivery could be so unpredictable.

And then she uttered that classic line that still makes me laugh out loud today. She was sure everything would return to normal now that the baby was here.

Seasoned parents know that a baby’s first lesson is that nothing is going back to “normal.”

Even in the humor of the moment, I was shocked that the new mom’s expectations were so unrealistic. Even more so because no one told her they were. However, I knew that was a lesson she was about to learn.

Yet almost 10 years later, I’d find myself learning a similar lesson under different circumstances: Our oldest daughter, whom we lovingly call Ladybug, had been diagnosed with hereditary angioedema (HAE).

Learning to embrace a new normal

Because our journey to answers was complicated, exhausting, and at times discouraging, I was glad we had answers when I finally accepted her diagnosis. Soon, Ladybug’s medical team introduced preventive and emergency medications to help relieve her symptoms and flares and prevent life-threatening complications.

“Finally!” I thought. “The medicine will make her better, and our lives can get back to normal.”

But that wasn’t the case. While the medicine minimized Ladybug’s flares and symptoms, they still occurred. And even though her doctors weren’t new to the disease, there were still unanswered questions and further research required. I learned very quickly that a diagnosis wasn’t a magic wand that would normalize our lives.

I made the same mistake the new mom from “A Baby Story” had made. Even though we were past what I considered the worst part, I assumed the next part of our journey wouldn’t come with hardships, stresses, and complications. It absolutely did. However, this part also includes new friends, new opportunities, and dynamic support systems. Even through our challenges, there are extraordinary experiences.

I completely understand the mom’s unrealistic expectations when planning to take the baby home. Yet part of me wishes I could go back in time, find her on the nights when the infant wasn’t sleeping or eating the way she’d expected, and let her know that even if this part of her life didn’t meet her expectations, her new normal still held exciting possibilities.

Is our life with Ladybug’s HAE normal? No. Will we ever go back to how things were before she showed the disease? Not likely. But the best thing about unrealistic expectations is that the reality can be part of the best thing you’ve experienced.

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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