08 April 2012

Today is why I can face Cystic Fibrosis.

I have been given a daily reminder that death is never far away.  

I am aware of it when I pull out Bennett's Vest to start his chest therapy.
I am aware of it when I locate all the pieces to Bennett's nebulizers and begin filling them with hundreds of dollars worth of medications.
I am aware of it when I pack up the car to drive Bennett two hours from our home for our quarterly Cystic Fibrosis clinic appointments.

We are on a timer.  And I know it.  
Death lingers much too close.  

Recently, even 4-year-old Oliver has demonstrated to be acutely aware of this.  Despite our greatest efforts to reassure him there is nothing to worry about with death, his questions and fears indicate he is trying to build a schema around the idea of premature death, something our family is forced to confront with Bennett's Cystic Fibrosis.  He recently asked:

"When I die, can I call on God's phone and talk to you?  When I die, do mommies come with little boys? When I die, will you be with me?  I don't know, mom, I think God is going to do Oliver first, then Mommy.  I think boys are going to go first before girls, boys before mommies."

Even though I try to reiterate to Oliver that he will not die until he is really old, he seems to have a sense that the order of the world is not right.  And, ultimately, I know this is true.

The world isn't supposed to be this way.  My son isn't supposed to live a life of suffering.  My sorority sister wasn't supposed to lose her husband suddenly.  Our speech therapist wasn't supposed to be diagnosed with an incurable and debilitating disease.  Our neighbor's teenage granddaughter wasn't supposed to lose her battle with a brain tumor.  Our friend wasn't supposed to lose her firstborn before she had even had her first cry.

These are just a handful of the weren't-supposed-to stories I could share.  There are so many more.  Pain paints the world around me.  The world is not what it is supposed to be.  It's broken.  And it's waiting anxiously to be renewed.

This is why today is particularly wonderful.  "Today is not like other days.  Today, everything changes.  Everything."  

Oliver knows this too.  On the way home from church today, Brian asked Oliver, "Oliver, do you know why we have Easter?"  And Oliver replied, " make the world new again."

Today is Easter.  It is a day of Hope.  I like to call it Resurrection Day because it reminds me of the story that today tells.

This is the day when death was overcome.  And it is a reminder that death will be overcome once more, this time for good.  Today reminds me I can look into the eyes of death and know it does not have the final word on my son's life or on those around me.

I do not face Cystic Fibrosis because I hope for a cure.  
I face Cystic Fibrosis because of today.

He is not here; he has risen, just as he said.  Come and see the place where he lay.  Matthew 28:6

Christ is Risen.  This is the only reason why I can face Cystic Fibrosis.


  1. Beautiful! Because He lives, I can face tomorrow...

  2. Thanks for sharing such beauty! I am a mama to 3 with CF. We're looking forward to following your family's story :)

  3. I have tried to keep up with your blog every now and then. I couldn't have written this post any better. We have a little man with CF, and this put beautifully into words the way that joy and grief can mingle at the foot of the cross. Thank you!


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