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.
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?