16 March 2011

Tomorrow's Appointment

I won't lie. I don't want to go to Bennett's CF appointment tomorrow.

I had really hoped we would be given a pass on tomorrow's appointment.

Last month, Bennett's CF doctor suggested that we make an appointment one month out as she was concerned about Bennett's lack of weight gain. But, as a condolence, she offered us the option to miss the appointment as long as Bennett's weight went up.

I called Tuesday to say, his weight was not up.  In fact, it seems like it is where it was 8 weeks ago.  He weighs about 23 lbs.  Then, he was in the 30th percentile.  Now, if this is actually how much he weighs, he will have dropped close to the 15th percentile.

This is a big deal because studies show that the closer a CFer's weight is to the 50th percentile, the better their lung function and ultimately their life expectancy.  In addition, children need to gain weight appropriately so that their brain is not deprived of the necessarily fats and nutrition needed to grow.  When Bennett doesn't gain weight, it an affect the quality of his life as well as his very life itself.

It is certainly disconcerting.

In the last two days, I have been pretty anxious about tomorrow's appointment.  I have gone through all the scenarios of why this might be happening, how I could have stopped it, what I could have-should have-would have done to correct this issue.

But one peace of wisdom came my way during a talk with my father about my anxieties about tomorrow's appointment.

He reassured me that I am a good mother, who wants to be for Bennett, and who makes good decisions on behalf of my son.  And he reminded me, "it's the disease that causes him to lose weight, not you."

It was a freeing statement.  It was a statement that put Bennett's issues into perspective.

As I daily grapple with feelings of guilt (is there something I could have done or should be doing to help improve my son's health?), my father reminded me that I am not in control of this disease.

"Sometimes, Breck," he said, "even when you do everything right, the outcome is not what you want.  This is a chronic disease and it is very difficult to predict and control."

Statements like these have so much power to offer relief for parents in situations like this.  It is so easy, as a parent, to believe that we are not only responsible for our children but have the ability to save our children.  The truth is, I am a part of the team that is fighting to save Bennett.  But I do not single-handedly save my child nor cause my child harm.

All that I can do is to continue to strive to balance Bennett's health - emotional, spiritual and physical health - in tandem with the rest of life.  The outcome is in God's hands.

Tomorrow's appointment will be an effort for the doctor and Brian and I to work together to find a way to keep Bennett growing.  Whether Bennett's life is extended or shortened ultimately is not up to me.  We are fighting CF.  And unfortunately, CF is fighting against us.


  1. The way you and Brian fight and advocate for Bennett and his health is inspiring to ALL parents. If I were CF, I'd be afraid of you. You keep fighting. Prayers are with you tomorrow and always.
    Robin Hogan

  2. I don't know what the worry is about his weight. My son, Simon, is 24 months old and weighs 27 lbs. and is 2 feet 10 inches tall and is in the 40th percentile. I don't see how Bennett's weight is such a concern.


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