Tuesday, December 22, 2015

Grownup Christmas List

[Blog post written by Mark Bonnema] 

“Well I’m all grown up now…”  Ok, I know several of my friends and family may take exception to that statement, but at the least, I’ve grown up physically. It would be a bit odd to see someone my size sitting on Santa’s lap.  The line quoted earlier is from the song "My Grownup Christmas List" and goes on to say, “I’m not a child, but my heart still can dream.” As an adult, I somehow find the restraint each year to avoid crawling up onto Santa’s lap, but I certainly resonate with the notion that my heart still can dream.

Generally speaking, our Christmas lists tend to get a bit more abstract and immaterial as we grow older.  Time with family and friends, relief for those who are hurting, happiness, peace, and a host of other positive emotional states are among the things on our grownup list of Christmas wishes.

I am thrilled and overjoyed that within the CF community, many persons and families living with CF have received their Christmas wish this year! Advances in drug therapies and treatments at the genetic level, such as Kalydeco, and Orkambi are allowing some people with CF who have specific genetic mutations to live with a greatly reduced symptom burden. Breathing is easier, the threat of lung infection is decreased, lung function is increased, and life is improved! It may not come with a bow or ribbon, but these developments in treatment certainly have been a wish fulfilled for many people living with CF this Christmas.  

But not everyone is eligible for the new breakthrough drugs because they do not have the specific genetic mutation that the drugs treat. These people living with CF continue to hope and wish for a cure or definitive treatment this Christmas. They continue to hope and wish that the next drug breakthrough will treat their genetic mutation, giving them improvements in quality and quantity of life. Some are even left hoping and wishing that the next breakthrough will come before it is too late.  This is my grownup Christmas wish. I long with all my heart for Ashley and so many others also living with CF to experience symptom free living, to be able to breathe long and free and deep.

Sometimes wishes come true. Sometimes great and beautiful things happen to fulfill our adult Christmas wishes.  More often than not, however, it seems we are forced to recycle the same wishes year after year, as progress ebbs and flows, with fruition lying always just out of reach. Should we give up on wishing? Be "more realistic," or temper our hopes so as to avoid the disappointment of unrealized dreams? Certainly not.

I think that the ability to wish and hope is great gift in and of itself. Wishing keeps us looking forward, it allows our imaginations run wild, chasing an image of a better and more beautiful future. That which we allow ourselves to imagine, we can work together to build and achieve.  

So I’m all grown up now, but I’m certainly not done wishing and dreaming. My wish this Christmas is for a cure for all persons living with cystic fibrosis. Thank you to everyone else out there who shares this wish with me and continues to work so very hard each every day to help this wish come true…  we will keep wishing and working until CF stands for Cure Found!

What are you wishing for this Christmas?     

Give something special and memorable to someone you love. Donate any amount to the nonprofit Breathe Bravely in honor of someone and get a personal message sent to them from Ashley. How?
Step 1. Donate at www.breathebravely.org/donate
Step 2. Send Ashley an email at breathe.bravely@gmail.com with donor and recipient information.

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