When I was a junior in high school, I realized that my somewhat lifelong dream to be a Pediatrician was likely an unattainable goal. While I had long excelled in Language Arts, I started to see, after a knockdown dragout brawl with my Trigonometry tests and an equally great disdain for Chemistry assignments, that my math and science skills were sorely lacking. I knew that years of Organic Chemistry, Anatomy and Physiology and really any math class higher than pre-algebra were best left to the smarties and that instead, I needed to find a career path that better suited my skill-set. I visited my guidance counselor and perused the college coursebook only to find that one of the first areas of study requiring only one math class and no science was perfect for me: Advertising. So, Advertising it was. I would be an Advertiser. Okay, not quite but I would be able to work in a big agency like all the women in the cool chick lits and I would take on the world. A year and a half later, I declared my major in Advertising and never looked back.
Fast forward four and half years…
After graduating college, I found myself in a rut during my first job search. I of course had no idea how to answer the age-old conundrum that a large percentage of college grads face: How do I get experience if no one will give me experience? Luckily though, I landed a fantastic first gig at Waggener Edstrom Worldwide, a PR Agency with a branch office in the heart of Austin. I was thrilled … step one to taking on the world was complete. I was working in a fast-paced environment with a fridge full of free Perrier, Diet Coke and Heineken for 4 o clock on a Friday. I could take all the pens and paper I wanted to supply my workspace. I was issued my very own laptop and helped myself to endless snacks and treats in the breakroom. All in all, this was one shiny gig and I had a feeling I’d landed on a goldmine.
Fast forward to week 2 of my job…
Billable Hours. This is something that I now shiver at the thought of. When I took the job, it sounded great. When I did the job for a week, I realized it made me crazier than Kate Gosselin post-extensions. I was pulling my hair out over terms like utilization and measured my day in 15 minute increments. As a person very deeply rooted in the ME generation, I questioned why life needed to be all about work. I decided that if I was going to work such crazy hours, I wanted to do something that meant something to me … something that made a difference. I wanted to go on a search for the mystic work-life balance that people whispered of and I wanted to help humanity. I know, big idealistic thoughts.
Fast forward 11 months…
During the holidays of 2005, Adam and I returned to Nebraska for the holidays and while checking a job website, I stumbled upon a position for a Special Event Coordinator for a non-profit. This, for me, was an aha moment (not sure if someone now owns that term, but for now, I’m going to use it). As I read down the qualifications, I realized that even if I didn’t have the exact qualifications for the position, I was meant to do this job. I went through three phone interviews and sadly, did not have enough experience. But what I did have was a person who was willing to assist me in my Omaha job search. One week later, I received a call that the Cystic Fibrosis Foundation was hiring a Director of Special Events. I interviewed in person the next week. Less than a month later, I was offered the job.
Prior to my first interview with CF, I researched the disease hard and heavy. I had, of course, heard of it, but honestly didn’t know if cystic fibrosis was the disease where people had spinal issues, the one with children in wheelchairs, or the kids in a bubble. I quickly discovered that while CF was none of these things, it was even more horrific than I could have imagined. Cystic fibrosis is a disease that affects 30,000 people in the U.S. It is genetic and a child has a 1 in 4 chance of being born with the disease when two parents are carriers of the gene. It affects the lungs and pancreas forming a sticky mucus that makes it hard to breathe and to break down and absorb food. Currently, there is no cure for cystic fibrosis. Just twenty years ago, children with CF rarely lived until kindergarten. Because of the CF Foundation, there are now medications that help sustain patients however the current life expectancy is just 37 years old.
Thirty-seven. Years. Old. The thought was staggering to me. This meant that parents were burying their children. To me, this was unacceptable. Upon learning all these facts, I realized that this was something I could get behind. This was a cause that I could work for. That I could be passionate about. That I could put my name on.
Throughout my time at CFF, I met the patients and the families throughout Nebraska who are affected by this disease. I worked with Lori and Leon who tirelessly give of their time and resources to make a cure a reality for 5 year old Alex. I fell in love with the Barrett family who put all their time and efforts in the Lincoln walk to give 13 year old Mitchell a chance at a longer life. My heart melted for sweet Maddie who now has a g-button in order to keep weight on and for adorable Samuel whose skin hung off of him as an infant because of stomach blockages. I corresponded with Doug, Kathy and Stevie who lost their son and brother at the young age of 17 to this time-stealing disease. For me, this job became so much more than I ever bargained for … it was truly life-changing. True to the word non-profit, we didn’t have fancy water in the fridge and we pillaged our pens and paper from random freebie finds. It wasn’t glamorous or glitzy, as we schlepped auction items and set up at the crack of dawn on walk day. The office wasn’t deep in the heart of the city in some fancy building. However, for the first time, work filled my bucket more than any I’d ever done before and the low overhead meant more money towards a cure.
Fast Forward 2 years and 11 months …
I laid in the hospital bed, newborn baby boy in my arms, and for a brief moment before chaos resumed … the world stopped. As Adam and I took our first look at our sweet baby boy, for one moment, time paused. It was a perfect moment. This was the moment before the NICU debate began, before the tests flooded in, before reality resumed. They mentioned to me that Barrett needed ultrasounds to check for T. Fistula. I questioned what that was and was told it had to do with a disconnect between his stomach and his esophagus and immediately, my heart sank. When I heard stomach, I immediately took a leap to CF. I immediately questioned if he had a blockage. My mind raced with scared forward flashes of a life filled with twice daily breathing and vest treatments to clear the lungs of sticky mucus. Of enzymes before food to prevent pancreatic issues. Of a life with a child who although may look healthy from the outside, would be dying each day on the inside. Of a child with a disease that doesn’t currently have a cure.
Sounds like a leap, I suppose and sounds like drama… but after working with the disease for nearly three years, and having a baby who they whisked away so quickly, I couldn’t help but think the worst. But just an hour later, we knew Barrett was okay. We knew that Barrett didn’t have T. Fistula, a bowel obstruction or any lung issues. We knew that although he was a pint-sized peanut, we would be taking him home. We knew in our hearts that we had a healthy baby who in our minds, will someday graduate from high school, walk down the aisle and wait for his bride and be a be a father and moreover, a grandfather. We, with the healthy kiddos are the lucky ones and we rarely recognize it. What a luxury we all have.
Two and a half months later, I was overwhelmed with a small, screaming babe and I chose to leave my position at the CF Foundation to pursue being a stay at home mother. To leave this job was the toughest decision I’ve ever made. But it even more solidified my belief in the cause. I was overwhelmed and I had a healthy child…how did the parents of the patients I knew fight CF every single day? I knew that I must continue in the fight to eradicate cystic fibrosis. Although I had never become a pediatrician or taken on the world as an Advertising executive as I once dreamed I should, working for CFF gave me so much and I knew I would forever continue to give back.
Fast forward to present day…
In two weeks, I will walk for a cure for cystic fibrosis. With over 1000 other people in the Omaha area, I will gather to give a voice to this disease which although small, is unfortunately quite mighty. I will be taking steps towards a cure for CF. I will be walking for Mitchell, Alex, Sam and Maddie … and of course, so many others. I ask that if you are reading about CF for the first time, you visit the Cystic Fibrosis Foundation website today to educate yourself on the disease and to find out just how incredible CFF is at using their resources. If you are interested in walking with me on May 8th, 2010 at Lewis & Clark Landing, sign up for the walk today. And, of course, if you are interested in supporting a cure for Cystic Fibrosis, donations can be made by visiting my personal walk website.
When I was a Junior in high school and I set out to be an adverstiser, I never would have fathomed that I would later be willing to ask strangers, friends and family for money. I never would have thought I would be so affected by something that didn’t affect me. Working for the Cystic Fibrosis Foundation gave me perspective I believe I otherwise would have never had and a lifelong dedication to a cause which has become my own. And while Adam and I are proponents of many non-profit organizations, we will not stop being advocates for the Cystic Fibrosis Foundation until there is a cure for the disease. After having Barrett, we believe more than ever that every child deserves the right to expect a long and healthy life. If you believe this too, please make a donation today and help make CF stand for Cure Found.
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