Friday, September 19, 2014

Endless Possibilty

Dreams. We all have them.  We have them not only for ourselves, but for others as well. There is no greater gift than having someone believe in you, I mean really, truly believe in you: for someone to know and believe in the promise that dwells within you, and to dream of all possibility.  It can be parents who first cultivate those dreams and wishes for you, even before your first cries are shared with the world.  Before they even knew you, they knew all the great wonder that lied ahead for you.  From the moment they held you in their arms, they knew your life held beautiful possibility.



Think about your own children if you have them, or just merely imagine what it would be like for a moment.  Think about that moment you held your child for the first time, that moment you cradled them in your arms and knew there was nothing more beautiful in the world to you. You were filled with insurmountable joy.  You had dreams not only for them, but for yourself as well.  Dreams of Christmas mornings, teaching them how to ride a bide, how to bake grandma's cookies, and dreams of sharing your own life experiences with them.  You knew they were going to do great things.  As you looked down at them for the first time, nothing seemed impossible. 

Two Words
But what if there were two words that changed everything?   What if those two words shattered all your dreams and hope for the future? Those two words?  Cystic Fibrosis.  Suddenly, dreams for the future were filled with doctor visits, hospitals, infection control, treatments, insurance calls, pills, and a shortened life expectancy. Worry replaced dreams, and the future was put on hold.  Suddenly, endless possibility had a shelf life. 
It's hard for even myself to imagine being a parent and having all of this happen.  It's one thing for it to be my own life and not know any better, but it's another for it to be happening to someone else.  I simply can't imagine someone telling me that my child, this tiny, fragile, beautiful, baby born of a future wrought with endless possibility, suddenly has a life's journey charted upon different stars. 

Even though that life may be charted upon different stars, it is just as beautiful.  It may be different than what had been dreamt for them, but nonetheless it is just as stunningly marvelous.  With that said, no parent should ever have to hear those two words: Cystic Fibrosis.  No parent should ever have to watch their child fight for every breath, to be a slave to pills, hospitals, and treatments, or even have to say goodbye.  

Hope for Tomorrow
These are the beautiful faces of CF.  Behind every face lies countless dreams and hopes for tomorrow.  Each beautiful life is filled with endless possibility.  These faces are someone's daughter, son, grandchild, nephew, and friend.  







Jennica, 4 years old.
Diagnosed at 12 days old.
She wants to be a "Best Friend" when she grows up.
What is CF to Jennica? "Going to the doctor."
She loves eating donuts and swinging on her swing set.







Dannika, 9 years old. 
Diagnosed at the age of 6. 

What is CF to Dannika? 
"It's a disease, but you can't catch it from me. You get it from your parents. Your mom has to have one half of the moon and your dad has to have the other part of the moon and if you have CF when you are born it means you got both halves of the moon. It's kind of like breathing through a straw. Most people with CF have to take enzymes before they eat, but I'm lucky and don't have to yet. Sometimes I cough a lot and if I catch germs from someone it's harder for me to fight it and I end up in the hospital. 
It's not so horrible to have CF. Some people say it is, but they just see it in a different way. If you have CF just know that God made you special and He doesn't make mistakes."




Tarryn, 7 years old.
Diagnosed at 4 months old.  
When asked what CF means she said, "having treatments to get the mucus out of my lungs and taking pills".  She wants to be a doctor or a dentist when she grows up.








Collins,7 months old.
Diagnosed at 12 days old. 
Likes: Carrots and peaches, Mickey Mouse Clubhouse, my binki and blankie. I'm
almost ready to crawl!

Kole, 5 years old.
Diagnosed at 2 weeks old.
Wants to be a football player when he grows up and play for the BEARS. 
He loves to ride bike, go swimming, play any ball.  He loves legos. Spending time with his brother.  
What he says about CF: "It's a disease that is on his lungs and it make it hard for me to play for a long time.  I can't wait to find a cure."   He wants to know at what age he can stop doing the vest.  



Fischer, Almost 4 years old.
Diagonised at his first well-baby care checkup.
What is cystic fibrosis?
"Cystic fibrosis is doing treatments."
Fischer likes to play, exercise, play with his friends and eat lunch at Beth's house.
He wants to be a lifeguard.  They watch people swim.

 





Spencer, 2.5 years old.
Diagnosed at 10 days via the newborn screening.
He is an active little guy who loves to run and play with his older brother. 







Reese, 5 years old 
Diagnosed at 10 day old.
She loves the color purple and is obsessed with anything Wizard of Oz. Her favorite food is edamame.  She loves being a big sister to her brother Sammy and ADORES spending time with her little friends.  Reese just started Kindergarten and wants to be a Paleontologist when she grows up. 






You can be a part of possibility.  You can help make dreams a reality.  You can believe in the beauty of a child's dreams.  Become a part of the CF family and help us fight for another breath: for those beautiful children, their families, and their friends. We are so close to a cure.  Be a part of our next big event to benefit CF drug research and development: giving each of us another chance at tomorrow and to live out our dreams. 

Corks & Kegs for CF
Friday, October 1O, 2O14
The District
Sioux Falls, SD
6 pm - midnight
Tickets available here: Corks & Kegs for CF

It's going to be a fantastic night of great wine, beer, food, and live music.  There will also be a Live and Silent Auction with fantastic items to bid upon.  Please join me!

I am living proof that there is a future, that tomorrow looks more beautiful than yesterday. That CF cannot stop me from believing in the beauty of my own dreams, nor can it extinguish the hope of those who first believed in me and continue to. For each of you, I am so thankful. Love to you all.

Tell someone you believe in them. 


A very special thank you to all the families and kids who helped make this post possible.

2 comments:

  1. What a wonderful sorry that tells a story as true to life as I've ever seen. PLEASE SUPPORT THIS! As a mother of a 27 year old we have lived every day waiting for the cure. We have been blessed to have a great family and support system and a life filed with love and laughter. As with anything it takes a village to raise a child, please be the village to find a cure for cystic fibrosis and stamp out cystic fibrosis.

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  2. I have a niece with CF. Until she was born we didn't know it was in our family. She. Is now 22 and living her life to the fullest.

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