THE BLOG
09/05/2014 11:30 am ET Updated Nov 05, 2014

Seeking a Bit of Normalcy

As a kid normalcy typically consists of going to school and playing sports. It consists of homework and tests; games and practice; running around and getting into trouble. It consists of making friends; of growing up and learning. It consists of graduating high school and going to college. Normalcy as an adult consists of work and responsibilities. It consists of settling down, getting married and starting a family. On some level we all strive for some sort of normalcy. We all want to have friends. We all want to be part of a group. A group of people that have shared interests, values and beliefs. On some level we all want to belong.

As a kid, normalcy with cystic fibrosis requires waking up early to do treatment before school. It means going to the nurse to either do a treatment, retrieve pills for lunch, or both. It means missing school to go to the doctor. It means spending Christmas break, winter break or summer break in the hospital or at home on IVs. It means surgeries and procedures. Feeding tubes, digestive aids, growth aids and everything else you can think of. For a kid it means going to sleepovers with more medicine than you care to carry. It means missing soccer or basketball games because you have an IV in your arm. It means missing parties and events because you don't feel well. As an adult it's more of the same. Instead of missing school its work. Instead of missing parties its nights out and trips with friends. Normalcy with CF is finding a balance between what you want to achieve, what you want to experience, what you want to be a part of and what you can do. Time fills up quickly. CF requires attention. Constant attention. And for me, for everyone with CF that is normal.

It's that level of attention. That level of dedication and commitment to healthy living that allows me and others with CF to live a "normal" life. However, in looking back and thinking and reflecting, I've realized that my life is not normal. It's not ordinary. My life is anything but. My life is amazing. My life is special. I've learned and experienced. I've failed and I've succeeded. I've laughed and I've cheered and I've cried and I've sobbed. I've achieved some my goals and I've fallen short of others. In 30 years, I've lived anything but a normal life.

And in less than two weeks I'm getting married. To a girl who is anything but normal. And our relationship is anything but normal because it takes a girl who is anything but normal to marry me. It takes a girl who is patient. It takes a girl who likes bad jokes. Most importantly, it takes a girl who has strength and courage. It takes a girl who is extraordinary. And that what's our life is. It's extraordinary. And yes, at times, we have to work very hard to be "normal," but that what makes our life anything but.