I remember living with my illness growing up. Though I was fairly active, I was also never as good as the other kids – I could never keep up with them. Not even the girls, which can be pretty humiliating as a young boy! Yet, I also felt incredible support from the kids around me… Most of them knew what I had – they understood the obstacles I faced.
I met my princess, Laura, in my mid 20s. Ironically, by that time I had come to terms with the idea that falling in love wasn’t in the cards for me – I had a lot of trouble with the thought of developing a relationship with another person, then leaving them. And, I knew that watching me go downhill and die of CF would not be an easy thing. As I fell in love with Laura, I had a number of difficult discussions with myself. I guess I decided that I deserved to be in love with someone. I’m glad I did, Laura has made all of my struggles worthwhile, and all of my joys more joyous.
An incredible doctor took care of me for 28 years – he guided me through so many obstacles… When we decided I should be listed for lungs, he told me that this would be the most difficult year of my life. Neither of us imagined I would wait almost three years.
I struggled for 40 years with cystic fibrosis. During most of those years I didn’t even know I was struggling – that was just how I knew life to be. The last several years waiting for transplant I knew I was struggling.
Sometimes I wondered or imagined how life might be without CF – what it might be like to breathe “normally”. I was not-at-all prepared for this. Breathing as I do now is better than my wildest imaginations!
I had four “false alarms” while I waited. Four times, four families, going through four devastating moments in their lives – reached out and tried to save my life. On April 8, 2000, the phone rang a fifth time. A family in Iowa was experiencing the most devastating moment in their lives. But, in the months before, their precious daughter had told them how strongly she felt about organ donation.
I didn’t know that Iowa family when I was transplanted – I learned about their precious daughter a few years later. I learned her name was Kari and she was 17 when she passed. I met her family and several friends a few years after that… They are a truly beautiful family.My passion now lies in telling people about organ donation; and mostly, telling people about Kari.
I get to speak quite often about organ donation. I get to tell people about Kari – I get to show them her beautiful smile. I get to tell them about the life she’s given me.
I get to help donor families understand what they’ve done for someone. And, how we recipients feel about them and the loved one they lost. Speaking to donor families means the most to me – I want them to see how I feel about Kari and her family. I want them to understand there are people out in the world whose lives they’ve saved, who feel the same about them.
I get to help medical professionals and organ donation and transplant professionals see the result of their efforts. I get to tell them how grateful I am for what they do, and how grateful so many of us are. I’ve had so many of them touch my life over the years. Kari saved my life when I needed her most, but so many of these people carried me to her door, and helped carry her to me…
I get to help people considering organ donation understand exactly what donation does for others. And, show them that donors and donor families are heroes in the eyes of their recipients.
I get to give people waiting for an organ hope – hope that others will hear our message and someday save lives, including theirs… Hope that others will want to be someone’s hero when they leave this beautiful planet.
But most of all, I get to tell people about Kari – I get to help her smile and her beautiful spirit live on in so many hearts and minds.
I waited three years for Kari to come into my life. I know so many precious people waiting for lungs and other organs. When I tell people about Kari, I tell them how she felt and what she’s done for me. If enough people understand the goodness in organ donation like Kari did, maybe the pain and fear involved in waiting and wondering won’t be as great, or as long.
Jenn is one of my fellow contributors on our Revive Hope blog. Jenn was one of Kari’s friends who I met, and who I now adore. Meeting her and learning more about Kari and about Jenn has been one of the more wonderful things in my life. Jenn has developed an incredible passion for telling people about organ donation, and about me and Kari.
Jenn once told me that she thought the greatest fear Kari’s Mom has is that people will forget about her daughter. That will not happen on my watch – not while I’m breathing.
Read Dyamond's Focus on Compassion.