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Post by Jenny Livingston

This is not the life I expected to have

Carefully folded and tucked away somewhere, my dad still has a picture that I drew at the age of 9 or 10. On the paper, painstakingly sketched and colored, is a two-story home surrounded by a white picket fence. The yard is full of towering trees and, winding between them, a narrow, well-worn path leads to a small pond at the edge of the yard. This was my dream home; the home where I planned to one day raise five children. We’d play in the yard with the dogs, take turns swaying back and forth on a giant tire swing, and gather for family dinner at sunset.  

From the time I was incredibly young, I had a vivid picture in my head of what life would be like. Or rather, what I expected a normal life to look like. Not only regarding my home and family, but what my goals and accomplishments would be, the relationships I’d have, and the kind of mother I’d someday become. Everything was planned to the tee, and it was all picture perfect.

Over the years, there has been a recurring concept I’ve noticed creep into my conversations with others in the CF community – the desire to lead a normal life. As a child who sometimes felt different or singled out because of my disease, I wanted so badly to fit in. I didn’t want to be the only kid being called to the office to take pills before school lunch, missing school for days on end as I recovered from surgery, or spending two weeks of my summer in the hospital every year. I wanted to be normal and I clung to the belief that as an adult, I’d have the ability to create a life that closely resembled the one pictured in my mind.

When I was 22 years old, my daughter was born. Life as a new mom was all I ever dreamed it would be! Then, shortly after her birth, I became incredibly sick. I found myself in a hospital bed, barely able to breathe, in severe pain, terrified and feeling very alone. I truly believed I was dying. I cried countless tears during that hospitalization. I cried because I was finally beginning to realize I couldn’t escape the harsh realities of living with cystic fibrosis. I cried because I was emotionally and physically exhausted. I cried because I felt that, in many ways, CF was robbing me of the life I’d always wanted.

Having several children was not in the cards for me; I could barely keep up with the demands of one. I was likely never going to have that big house with the white picket fence and enormous yard to play in; I could hardly walk up a single flight of stairs without feeling like I might collapse. Hospital stays, treatments, a body that was in constant defiance, endless pills, and medical procedures — none of those things were part of the normal life I had hoped for.

From where I sat, under bright lights with medical machinery beeping all around me, the portrait of my current life and that of the life I had envisioned looked nothing alike. Where there were supposed to be splashes of vibrant color, there were gray shadows. Instead of a cohesive, picturesque scene there was a mess of odd, senseless shapes. I felt discouraged, lost, and with each beep of the monitors attached to my body, my faith grew dimmer. At that point, the only thing I had energy left to hope for was a safe return home to my daughter.

In the weeks following that hospitalization, I slowly began feeling better and as my health returned, so did my morale. Eventually, I began feeling excited and optimistic about the future again. In some ways, I felt even better than I had before that difficult hospitalization. While I was still working toward a full physical recovery, I walked away from that trying experience with a new appreciation for my life and the beautiful blessings in it.

That’s when I started thinking, what is normal anyway? Who or what is the standard that we are supposed to measure up to? Because you and I are different, does that mean one of us is not normal? CF is the only normal I’ll ever know. Does that make me abnormal? What exactly constitutes a normal life?

Synonyms for the word normal include things like average, customary, standard, ordinary. Who in the world wants to be ordinary? If I were to write a list of 100 adjectives to describe the life I want, I can assure you that ordinary would be nowhere on it. Exceptional? Absolutely. Adventurous? Yes, please. Give me a life that is passionate, exciting, love-filled, and interesting. I’ll even take challenging, painful, and sometimes heartbreaking before I’ll settle for ordinary. For so long, I thought I wanted a normal life without any consideration for how utterly boring that would be! I’m a firm believer that the most beautiful moments in life are blended right alongside the most difficult ones, and it’s the juxtaposition between the two that makes the good moments so wonderful. I can still see those portraits in my mind: real life vs. the life I’d imagined. It wasn’t until I reached a very low point in my life that I really examined those pictures. At the time, I was disheartened by their differences, but in time, I began to see them in a new, more forgiving light. The more I looked, the more I began to see some incredibly significant similarities between them.

All the important things are still there – love, family, purpose, a home, friendships. Sometimes I have to try a little harder to make sense of the shapes, and like many pieces of great art, there are still parts of it that I don’t entirely understand. CF still throws a wrench into my plans on a regular basis, and it has presented the most difficult challenges I’ve ever faced, but it has added a whole new dimension to my existence. For that, I am grateful, humbled, and endlessly awestruck.

This life of mine is extraordinarily different from the “normal” one I once strived for, but it is so much more beautiful than I could have ever imagined.

Other posts by Jenny Livingston

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.