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May 21

Posted by: ACHA
5/21/2014 12:20 PM  RssIcon

By Brenna

I grew up "normal." What does that even mean? For my family, "that" meant "cautiously optimistic." That was the way my family dealt with my heart condition: We didn't know what to expect, so why dwell?

The first two years of my life were hard on everybody, from what I was told. My father was scolded at the market for having a blue baby who was "obviously cold." My brother spent a lot of time with our amazing grandparents. And my mother, who didn't even want children until meeting my father, couldn't do anything but watch and hold on. So once it was done—after all the surgeries, tubes, and support groups—we were a "normal" family.

My pediatric cardiologist helped us stay cautious. Holter monitors every year. No soccer after a certain age (my team lost a great flower picker!). No volleyball in 6th grade, which, like, of course RUINED my social life, like, forever—OMG—all the cool girls were doing it! And I never got pierced ears... something about infections. Otherwise, I was just another dramatic and awkward teen—totally normal.

So when a doctor said, "I'm surprised you are 21 and haven't had a cardioversion or pacemaker yet. Those are quite common for your condition," I simply replied, "I don't have a condition, I was fixed."

For the following two years I would rely on my family and friends across the country to help. I'm grateful for the cards, visits, and hand-holding, but I loved the "normal" things. My best friend stopped by during my first hospital stay and recounted her date, didn't even mention all the tubes. Just a couple of girls hanging out in a hospital room talking about boys.

I loved that my parents, who use sarcasm and wit to diffuse tension, made fun of me for having mats in my hair. "Oh goody—you're just like the dog, are you going to run away from the comb too?" my mom said as she called the salon. Or even my dad, who would go out of his way to get me any food I thought I could keep down, commented, "No, I'm not getting you tofu—I'll be eating most of this after your two bites, so make it good." (Not even a joke, he always did). And when I told my mom I wasn't showering because I couldn't stand up long enough? "Nope, uh-uh, not happening. You can't mope and stink. Come on, I'll hold you up."

Sure, they doted, comforted, and listened, but they weren't attending my pity party. I'm forever grateful for their support. It helped me hold on to my humor, normalcy, and… hygiene.

Brenna is a happy, healthy marketing professional living in San Francisco. She loves to volunteer, talk politics and sustainability, find excuses to eat cupcakes, explore San Francisco, and try new workouts (TRX, anyone?). Brenna has had two open heart surgeries (one Fontan and one Fontan Revision) and two pacemaker implants. Follow her on Twitter @obisaacson and on her blog  

Copyright ©2014

Tags: Brenna
Location: Blogs Parent Separator ACHA Blog

1 comment(s) so far...


Re: “Normal”

"I don't have a condition, I was fixed."

THIS. This is how I responded to literally every doctor who remarked on how amazing it was that I'd been so removed from the hospital system, given my condition. (Truncus Arteriosus, Type 1). I hardly ever thought about it until started talking about another intervention-- my first one since the age of 6.

I'll be having a melody valve replacement this summer, and it's super weird to wrap my head around... because for so long I always told people, "oh, I had three open heart surgeries by my 6th birthday... but it's no big deal, I'm fixed now."

Thanks so much for this post-- it hit home with me!!

This is how I believe a lot of adult congenital heart defect patients feel-- that they are "fixed."

By Lynne on   5/21/2014 2:17 PM

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