29 January 2013

What's my role in this fight??

When facing an incurable disease, one must decide to 'lie down and die' or to 'get up and fight.'

I believe that our family is like many who face Cystic Fibrosis on a daily basis, we chose to get up and fight.  How can we quit on a child who has hardly had a chance to live?

But what does it mean to "fight" a disease that is slowly suffocating my child?  While I can comfort my sick child, my healing skills are essentially useless.

I, only partly, even understand how Cystic Fibrosis affects my child's body.  I do not have within my power the opportunity to heal him.  Only doctors and scientists will ever be able to do that.

So, what does a family with a child with Cystic Fibrosis do in an effort to 'get up and fight'?

I believe this is what it means to fight: to drag all the resources within our power to the feet of the people who can actually make a difference.  To fight Cystic Fibrosis is to raise as much money as possible to pay for the absorbently expensive and extremely time-consuming process that must be undergone to eventually discover the cure for CF.

And so, life with Cystic Fibrosis is this...

- keeping the CF child has healthy as possible in order that the child will eventually benefit from a cure
- spending 8 months of the year preparing to fundraise and the other 4 months actually fundraising.

Enter fundraising season...

I have many emotions during this time of year.  Sometimes during this season, I feel energized and inspired.  This is the time when I can feel the most hopeful - like our efforts for a cure really matter.  I feel cared by those who love our son and want to see him live beyond his predicted median life expectancy of 37.

And yet, this is the time of year I can also feel the most defeated, overwhelmed, lonely and worried.  The task seems so big.  Do I really have to do this again? Does anybody really care?  Am I fighting alone?

But part of fighting a battle is reminding myself why I'm there in the first place.  I am here for Bennett.

Bennett is worth all my effort.  If I fail, I fail.  But if I succeed, I succeed.  Bennett is worth working for, raising money for, finding a cure for.

For all the days his little body has faced defeat and for all the days he has felt overwhelmed, lonely and worried...I can do this.  I raise money to find a cure for Cystic Fibrosis because this is my part in the fight.

It's my role to drag all the resources within our power to the feet of those who can make a difference and find a cure.  This year, my efforts will be to encourage, influence, activate, enliven and inspire those around me to join our team to make a difference in the life of Bennett and those with Cystic Fibrosis.

And so, it begins for 2013...

Will you join us in this fight?


  1. You always do such a great job! I look forward to walking again, this time with the baby in a stroller :)

    1. Thanks so much, Joy. :) I look forward to your walking with us again - with little man on the outside of the world this time. Before you know it, he'll be walking alongside you!! :) Thanks for your and Nick's support as always. :)

  2. I used to work with Rachel Whitenton and she mentioned your inspirational story! Bennett is a lovely and blessed little one, and know that I'm thinking of y'all! <3 <3

    1. Sarah, THANK YOU SOOOOOO MUCH!!! Thank you for taking the time to support Rachel...for reading more about Bennett and for thinking of us!! What a gift it is when those who don't even know us personally reach out and care like you have. It's a blessing for which I do not have words to describe. Thank you, Sarah!!


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