When expected events still take us by surprise
Even if I'm prepared, HAE symptoms can throw me for a loop
There wasn’t a person on earth who knew more than I did at my 38th week of pregnancy. That’s what I thought, at least.
With an incredible OB-GYN team in my city, a sister who served as my “virtual” obstetrician before that was even a thing, an overly attentive husband, and doting friends, we were counting down the days until my oldest son was born. I even gave myself extra points for a completed nursery, a closet full of baby clothes, and a packed hospital bag waiting by the door.
But that wasn’t why I claimed to be the expert.
During my pregnancy, I read every book available to expectant moms. My bookshelf in our small apartment was a testament to the library of knowledge I’d consumed in a little over eight months.
Because of this, I believed nothing could shock me. I was ready for pregnancy hot flashes. The infamous Braxton Hicks contractions didn’t send us rushing to the hospital. I even knew how to arrange pillows on the bed for the best night’s sleep.
I was convinced that nothing would take me by surprise — until my water broke at 2 a.m. during a quick trip to the bathroom. The moment it happened, all the books, articles, and internet searches went out the window.
Although I was prepared for this moment, nothing went as I expected. Eighteen years later, I still find myself in these types of situations, but with a different kid and a drastically different medical circumstance.
Preparing for surprises
When our oldest daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), it would be an understatement to say I read every possible piece of information I could get my hands on.
Ladybug has an incredible specialist who keeps us informed, her physician auntie who is amazing at finding us more resources, and an incredible organization that provides us with the support we need.
But no matter how prepared we think we are, her symptoms and subsequent flares still manage to throw me for a loop.
Most recently, when Ladybug had her braces removed, I knew we were on borrowed time, as her HAE tends to flare up after extensive dental work. Yet, when it happened, for a moment I felt very much like I did 18 years ago when her oldest brother broke my water.
However, these moments have something in common: We’re still prepared, even if they take us by surprise. After a few doses of Berinert (human C1 esterase inhibitor), Ladybug is back on track.
I’ve realized that as a caregiver of a child with a chronic illness, my job isn’t to work on not being surprised by her HAE symptoms; it’s to know how to handle issues when they occur.
That’s a good motto for a caregiver’s journey and an even better motto for life.
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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