Friday, June 25, 2010

Of Blessings and Battles

I'm not sure how to start this post, so I'm going to take a page from my wonderful wordsmith of a Godmother and just lay it out there:

CF sucks.

Over the past few days I've been sending out extra love and light to some close friends battling some of the tougher aspects of cystic fibrosis. This morning I awoke to the news that Conner Jones, a beautiful young man, brother, and son, left behind his CF lungs to take his first few breaths in Heaven. And I don't think it's okay. As at peace as I am with my own faith and with the notion that, as Sara might say, the universe is unfolding exactly as it should, I still find it incredibly difficult to deal with such unfairness. And it should be. It should be difficult to lose a 6 year old to this damn disease. It should be a call to arms, and a reminder to all of us that this fight is far from over. It should cause a sobering moment of reflection because for all the amazing new drugs, the transplants, the miracles, there are still children whose bodies simply cannot hold on anymore. It frankly reminds me of so many evenings when I've been sitting on my couch, warm and well fed with my puppy beside me, and news of some catastrophe pops up on the nightly broadcast. I always sit there stunned for a moment, as if there's some disconnect between the beauty of the world all around me and whatever terrible unfairness has just unfolded in the world at large. It doesn't compute somehow. And that's also how I feel about Conner. It just doesn't quite make sense.

In stark contrast to those emotions is the absolute joy I feel at finally being home, and my gratitude at each moment as I realize more and more that this is real. That I do not, in fact, have lungs filled with thick, sticky mucus, slowly succumbing to infection. I walked in my door yesterday and just started to cry, silently. Tears streamed down my face as I cuddled my puppy, as I took my first shower and allowed my mom to help wash my hair, as I dug into the celebratory dinner made just for me by some of the people I love most in the world. In my head over and over I just kept thinking "I did it," but what I really mean is WE did it. My family, friends, doctors, donor and family -- all of us. We saved a life (and, in my donor's case, probably multiple lives). And that life was my own.

What a complete study in opposites.

I will never, ever understand all of this. And I'm okay with that. I don't need to understand everything to accept it, but I also feel strongly that it's okay to ask questions. It's okay to be confused about things like this. It's totally natural to ask why, even if we accept that maybe some questions just don't have an easy answer.

So I sit here tonight here tonight overwhelmed with raw emotion. So much has been done to advance the hope of patients of and families affected by this disease. So much is still left to be done. So many blessings have been given, both to me personally and to all those lucky enough to have known someone fighting CF. So many prayers and hopes and dreams remain to be answered, known, and lived. And for each moment we rally behind the battlecry of hope that has brought us so far, we need to remember all those for whom we are fighting, and all those whose banners are left for us to take up.

Breathe easy, Conner. And may all of us everywhere continue to breathe easier.


  1. Very sad to hear about littlle Conner. What an angel he will be! I'm so happy for you Piper. I've been following your blog for awhile & cannot express my joy for you. I pray you get stronger everyday. If it's not too late I'd love a t -shirt. My email is
    let me know where to send the $. I'd prefer a medium if you have it.
    Thanks-take care
    32 y.o. CF'er... Mom to 2 babies

  2. Piper,
    I learned about Conner a few months back as I was following links from your blog. I am so sad. You are right. This sucks and it's unfair and's not right. Beautiful little boys should not be earning their angel wings at six years old. We will continue to climb and do what we can to continue helping to fight CF. I promise. And, even in my anger and lack of understanding, I will pray for Conner's family - for peace as they navigate this unimaginably difficult time.

  3. That was a very heart felt post,it mad me really sad too thinking of all the unfairness the world dishes out.
    Wel can all pray that they come up with a cure sooner then later.
    R.I.P can breath easy now!

  4. Beautifully said, as usual.

    I felt very much the same, that especially after experiencing a "full breath" and an active life, I want it so much for everyone...

    Hoping Conner's family finds some peace in what I can only imagine to be an unbearable time.

  5. Happy for youxxxx :)joanna

  6. There is no explanation to terrible things going on in our world, i think that's where faith comes in-you just have to tell yourself that things happen for a reason, we just aren't wise enough or aware enough to recognize those reasons.