A Tribute

My friend Colleen passed away two weeks ago and I have not had the words to express my sadness over her death. Colleen had CF, and this disease took her away from us. She was only 16. CF is still taking such young lives and it is devastating.

Although Colleen and I were nine years apart, we still connected. We shared the common bond of having this disease wreak havoc on our bodies, day in and day out. Colleen's family and my family met when I was young, at a CF fundraising event in Chicago. They live in Indiana, but would make the drive to Chicago for the CF Foundation's walk-a-thon each year.

Colleen started to reach out to me these past few years as her CF worsened. Once, when she was in the hospital, I stopped by to say hello and took her some cupcakes. Colleen started to talk to me more and more as she went through high school. She asked me about being short and driving, I admitted I learned to drive while sitting on a pillow! We talked about leaving friends behind when we went into the hospital, and the disruption to our social lives and education from being laid up in a bed for two weeks.

Colleen was a bright, beautiful and confident young woman. She had so much love and support, but unfortunately we can't cure this damn disease with love and support. I decided to write a letter to Colleen in this post, things I wish I could have said to her before she was taken from us all too soon :

My dear, sweet Colleen,

I am so thankful for the friendship we had. I was always in awe of your confidence at such a young age, with such an ugly disease giving you every excuse to slink behind closed doors. Every time you posted a photo on Facebook declaring your beauty while showing the world your G-Tube protruding from your stomach, I was in disbelief. I never had the confidence like you did at your age. You told people that CF was beautiful, that you were beautiful, and you were. Your eyes were windows to your soul. Those eyes spoke to me through your photos. I could see the great zest you had for life, and the joy you felt by being alive, no matter how much CF had thrown your way.

I know it got harder at the end. We spoke of anxiety, and depression and an overwhelming sense of living. You were tough, but I knew this disease was wearing on you. You still showed your tenacity by wearing your oxygen as proudly as you could, and by showing the world that an IV pole in your living room was cool. I admired you for your strength. Truly, I was never as brave or outgoing at 16.

Your family made a choice after you were gone to have your doctor call me to deliver the unbearable and unthinkable news. I was still asleep, in good ol' CF fashion, so I never got that call. My husband had to tell me the news and I sat up in bed, threw my phone down and pounded my fists as tears were streaming down my face. I was mad at the world that morning. Totally and utterly pissed off that it was you who had to leave us so early. Your whole life was ahead of you and we had so much more to talk about. I cried so hard that morning and I was lost in my thoughts for the rest of the day. I didn't want to hear crap about 'no more suffering' or that you were in a better place. I wasn't having any of it. I wanted you, talking to me on Facebook about life, school and this stupid disease. I was selfish in those moments, but I am glad now that the suffering has ended, no more tubes and monitors and treatments. They suck. To be fair, I'm sick of them.

My dear Colleen, I miss you, and you will always be in my heart. Some days I want it to all end, but I will keep fighting for you. I will fight and wait for those new lungs and I know you will be with me, cheering me on every step of the way.

Love,

Maggie