14 November 2009

Chutes and Ladders

One of the first things we heard when we learned our son has Cystic Fibrosis was, "I'm so sorry."  We heard it again and again from the doctors, nurses, other CF families, etc.  It was a bit puzzling to us.

Certainly a disease like this was going to make life hard, but is it really worth saying, "I'm sorry" for?  What was the "I'm sorry" in reference to?   "I'm sorry" is usually reserved for apologizing over a loss.  What loss had just occurred? 

As we began to learn more about CF, we began to better understand why "I'm sorry" could be an appropriate response.  People were sorry that our son would have so much trouble doing such a simple thing: living.

We have heard of many people with CF who have lived very normal lives and have been very happy.  Cystic Fibrosis certainly isn't what it was 50 years ago.  There is so much more hope now for those diagnosed with the disease.  There is even a reasonable hope for a cure in the next few decades.  And while the life expectancy is 37, there are some people who live beyond that.

But still, there are many who do not live beyond their young adulthood.  And at this point, there is no cure for Bennett.

And while many CFers do have a very fulfilling life, the reality is that people with CF don't just live life "as normal" up until age 37 and then pass away.  The truth is that CF is a progressive disease that slowly robs its victims of life. 

The best way of describing how CF works with respect to life expectancy is to use an analogy of the classic children's board game Chutes and Ladders.  Chutes and Ladders consists of a board with 100 numbered squares. The objective is to land on square 100 before the other players.  The players spin a pointer to determine how many squares the player will advance at his turn.  However, the board is littered with chutes, which move a player backward if landed on, and ladders, which advance a player.  In the game, ladders expedites the players ability to reach 100 first.

The way Chutes and Ladders relates to Cystic Fibrosis is that for most people, life is like a board filled only with squares.  Each year is like moving one square.  In the same way that moving to each sequential square is moving closer to the end of the game, for most of us, getting older each year brings us closer to a natural death at old age (equivalent to reaching the 100th square).

However, those with CF have a life filled with squares but also riddled with "ladders" (there are no chutes in this analogy as there is no way to spin back the clock and go back in time).  Each respiratory infection (cold, flu, pneumonia, etc.) is like a ladder, speeding up the amount of time to reach the end of the board.  Some "ladders" are small, seemingly not impacting the CFer's body.  Others are big, significantly speeding up the progressive disease's wear on the body's lungs.  (The number one reason why those with Cystic Fibrosis die is due to lung failure.)

The goal for those with CF is to prevent having those "ladder" moments as best as possible.  This is why we, as his parents, will work hard to prevent Bennett from getting sick.  A simple cold can turn into pneumonia fast.  A small infection can become a hospitalization quickly.  The flu shot is essential.  And a close eye on exposure to those who are sick is necessary.

As we have spoken with the CF experts here at Cook, we have realized there are a variety of reasons for "ladder" moments: enviromental, genetic, parents' or patients' initiative, etc.  Some "ladder moments" can be prevented, others cannot.

Either way, these "ladder" moments do take a toll on the CF body (whether they can be seen as doing so or not).  As these "ladder" moments become more frequent and more severe, they are warning signs that the body is unable to repair itself (this typically happens around adulthood).  Over time, the CFer realizes that the antibiotics are no longer clearing the infection and the lung's ability to function as usual is continuing to decrease.

We are aware that some might feel uncomfortable with our talking about our son's death so early after his little life just began.  We wonder if others might think that we are not hopeful, that we do not believe God can provide a cure or that we are being pessimistic, focusing only on the negatives of this disease.  But we do not feel this is the case at all.

For us, understanding the difficulties Bennett will face and accepting that Bennett's death may be sooner than we would ever want him to helps us to better appreciate the life God has given him - as well the life God has given us.  For us, to face death is to embrace life.

For we know, it not the length of time we have on earth that matters.  What matters is how we choose to live it.

"One thing I ask of the LORD, this is what I seek: that I may dwell in the house of the LORD all the days of my life, to gaze upon the beauty of the LORD and to seek him in his temple. For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his tabernacle and set me high upon a rock."  Psalm 27:4-5

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