Monday, December 6, 2010

I came here to live

Please ignore the freakish way my neck is craned in this picture, and get a load a' her precious baby blues!

This past weekend was great! As far as days spent in the hospital go, the past few have been some of the best I've ever had (ranking right up there with Tae-Bo parties and avocado masks at Primary Children's).

Adam and Morgan spent Saturday and part of Sunday up here with me. In order to keep Morgan entertained, we walked (and walked and walked) around the hospital. Morgan loved the tunnel that leads from the U of U to the Moran Eye Center/Primary Children's Medical Center, and she simply couldn't get enough of the Christmas tree that stands in the lobby on the main floor.

Getting out of my room was refreshing. Adam's arms were comforting. But the best part of their stay was when Morgan wrapped her arms around my neck, snuggled into me, and we fell asleep together; Mama and baby, chest to chest, breathing each other's breath. For a minute, it felt like home.

The other day, I was talking with a social worker and she said something that really resonated with me. It's a concept I've thought about time and time again, but I really liked the way she worded it. She said that, in her experience, she's noticed that most CF patients fall into one of two categories: those who are living their lives and just happen to have CF, and those who have CF and just happen to be alive. Very simply put, but still... pretty deep.

The idea of dying is in the back of my mind, somewhere, all the time. I mean, I lost a sister to the same disease that I'm fighting -- obviously I have always known it has the potential to claim my life as well. But, I remember clearly, the first time that thought held any gravity -- the first time it became REAL --  was when I fell in love with Adam. I knew I wanted to marry him, but I seriously questioned the fairness of letting him love me if I was going to die before we had a chance to make a life together. How could I put him through that?

Another time the thought of death seemed palpable was when I was in the IMCU last year, unable to walk or even get out of bed on my own, struggling to breathe, wondering if I'd wake up the next morning. I remember thinking is my daughter going to be left motherless? How will my husband cope with the loss of his wife and the responsibility of caring for our three-month-old on his own? What have I done to them? 


I recently learned of the passing of a friend of mine. She was 22 and had cystic fibrosis. We read each other's blogs, became friends on Facebook and regularly exchanged emails. One of the last emails she sent me detailed how well she was doing; she was excited to share with me that she and her fiance had begun talking about having children. She was completely fine, and the next thing I knew she was gone. I was shocked, angry, resentful; I cursed this disease that is so unrelenting. It wasn't until the next day that I learned that she had died, not from CF, but in a terrible car accident. A car accident!

There are just no guarantees; life is so fragile. I have a terminal illness, yes. I may lose my fight, it's true. There is a very real possibility that I may not have as many years as I'd like because of this disease. But, I could also be hit by a bus tomorrow. I can't imagine letting opportunities pass by, withholding my love, or selling myself short because I may not live to see tomorrow, when in reality, nobody is guaranteed a tomorrow. I mean, if anything, isn't the possibility of a short life even more reason to seize the moment... to find what you're passionate about... to really live?  


After a tearful goodbye, I watched Adam and Morgan disappear into the parking garage. As I began the walk back to my room, I stopped to take another look at the Christmas tree Morgan was so enamored with. As I stared at my reflection in an oversized glass ornament, I thought again of what a wonderful gift this life is. If I'd let my fears about death and this disease govern my decisions, I'd have never experienced just how beautiful it can be. If I had been to afraid to live, I'd have already lost my fight. 


 I choose to LIVE MY LIFE, I just happen to have CF. What about you?



    This is exactly how I strive to raise my two boys....

  2. Jenny you are such an amazing person and I live in awe of the strength that you have. To me you are still that cute little girl I met many years ago. Take care and I hope you get to go home to your loving husband and beautiful daughters.

  3. Amen. This is precisely how I feel, as well. (And I'm still jealous of your Tae Bo parties and avocado masks!)

  4. I love this post! Do you mind if I link to it in my blog post next week? It will have a similar topic, but you've already said much of what I want to say very eloquently!

  5. Thank you, Missa and Caitlyn!

    Cindy, I only wish you could have been part of them. ;)

    Stacey, I'd be honored if you link to it! And I don't know about "eloquent", but thanks. There was a lot of feeling behind this post, and I really hope I was able to articulate that.

  6. Everything you said in this post is exactly what's been on my mind. It hit so close to home when I heard about Bobbie.
    I hope you get out of there soon. And I hope you feel amazing and have the energy to chase that adorable little girl :)

  7. That was just beautful.... I think about this topic too often.... I have been out of the loop and didnt realize you were in the hole.... Hope you get to feeling BETTER than your normal self :) I can only imagine how hard it is for you to have to see your little one walk off as you have to go back to your room alone... HUGS... Thinking of you <3 HUGS....

  8. Jenny,

    You have such a way of expressing your deepest thoughts, and your wisdom amazes me. I'm thankful that you choose to live a full life in spite of having CF. I chose to live mine by continuing to have children eventhough I knew that each one could be born with CF. I don't regret my choices for a moment, and I'm so happy that you don't resent living a life with CF. You have brought much joy to your family, and I know how much happiness you have in your own little family. Don't the trials add a greater sweetness to the blessings?
    I love you,

  9. Mrs. J-Live, ;-)

    It's your most viewed post because it's passionate, it's a topic that your readers can resonate with, and - as many have said - it's very well written. I hope people will take the time to read your other posts as well because they are worth the time.

    It's an old adage, this "get busy living or get busy dying" attitude that hovers over our community. It annoys some and motivates other, but it's always in the back of our minds. We can't predict for the future, we can only prepare for what we think is coming by playing the percentages and throwing in a wild card here and there.

    Thanks for the kick in the pants that we need every now and then and reassurance that we are not alone in this thing called life.

  10. Thank you, thank you, thank you, everyone!


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