This is 40 :: Part l

This is one post I've been wanting to write for decades. In a few short days, I will be turning 40. I know many women dread getting older but I've been hoping for this day since I was 16 years old, so I'm ready to shout it from the rooftops! But first, allow me to put it into context...

When I was diagnosed with CF in 1985 (at age 5) the doctors told us that I likely wouldn't live to see 18. One year later, new to the cf world, the tv movie 'Alex: The Life of a Child' debuted sharing the short life of the late Frank Deford's daughter, Alex, who died of CF at age 8. 

When I was 16, a few girlfriends and I did this psychic "thing" where we each asked yes or no questions. I asked if I would live past 30 years old. It said 'yes.' I asked if I would live past 40 and it said 'no.'  When you're a naive and impressionable 16-year-old that may as well have been God himself handing me my walking papers. I am fully aware of how ridiculous it all sounds, but that one moment was forever embedded in my mind and it loomed over me for the past 24 years.

When I was 21, I lost my first CF friend, Jared, to the disease. He was only 22 years old when he died and it rocked my world. 

When I was 25, I lost another CF friend, Danielle, someone whom I had grown up with. She was 21 years old when she passed. 

When I was 29, I spent several days in a drug-induced coma in the ICU; my future uncertain. 

Mortality has played a role in my life from the time I was 5 years old, and, truth be told, I wouldn't have wanted it any other way. I never took life for granted because I always understood its fragility. That has been a gift. 

A few months ago, as I was preparing to head to DC for the CFF Conference, I had to submit pictures of my life from birth-now for a tribute video. It was an interesting experience going through pictures from every stage of my life. It gave me the opportunity to step back and appreciate all of the memories I've made, the relationships I've been blessed to have, and all the beauty I've witnessed. 

I can say with certainty that I have lived a full life with peaks, valleys, and everything in between. By Jared and Danielle standards, I've been lucky enough to live two lifetimes. That good fortune lives in me every second of every day--even the seconds that suck. So much of my advocacy work is to honor them and their incredible spirits. 

My 40 years have been simultaneously ordinary and extraordinary and I have learned so much. I have said that a part of my reason for this little blog is to leave a written record of my thoughts for my son, Myles. It is with that intention that I wrote Part ll (coming soon), which feels like sharing a piece of me.

By far and away the best part of my life has been the people in it. I have met (and continue to meet) some of the most amazing, kind, and compassionate human beings. I have loved with all my heart and received more love than any one person should. It truly is a spoil of riches. When I think about the past 39 years, it's not where I went, what I own, or what I did that I remember. It's the heartfelt conversations, the soul-to-soul connections, the lessons I've learned, and the laughs I shared. 

Turning 40 and being relatively healthy feels like the first page of a new chapter. I have no idea what stories will lie within this chapter and I know for sure it will have its challenges, yet I feel a sense of renewed possibilities and liberation from that looming expiration date. I feel immense gratitude for the past, true acceptance of the present, and excitement for the opportunity to continue learning and growing in the future. 

To share Jared's favorite quote: 

"Life is not measured by the number of breaths we take, but by the number of moments that take our breath away."