You see this little boy right here?
This wonderful, happy, beautiful, little dude? He loves being outside, fruit, suckers, Mickey Mouse, and Minions. He has an impish grin and sweet spirit that melt just about everyone he meets. He is headstrong but has a heart of gold and all the charm you could imagine. He is naughty sometimes, but in my eyes, perfect and loved and he's more than I imagined when I was told I was going to be the momma of a boy. I do not have the words to express the joy he has put in my life.
But this boy, this one right here,
he has Cystic Fibrosis. CF is this evil genetic disease that attacks his lungs and digestive systems.
Crosby was diagnosed with CF at 15 days old. Lance and I had hardly even ever heard of the disease, but technically, we gave it to him, genetically speaking and all. During those first couple of months, I was in this deep, dark sea of emotion. While navigating the challenges of being a first time mom and having a newborn, I was also trying to tackle and endure those endless chest therapy sessions, meds, nutrition, clinic appointments - all while absorbing a new diagnosis and it was a lot.
We are three and half years in now, but there is still a deep lingering pain that settled into my mind, body and soul that fateful day. A pain that I would not wish upon anyone, ever. That pain exists because CF is ugly, gross, complicated, unfair and above all else, life shortening. There is no cure... (yet).
But you know what else has settled in me? An even deeper, unstoppable, indescribable mama bear force that cannot and will not allow me to give up. And that force is stronger than all that other stuff. I will not give up for Crosby. I will never stop fighting for him. And, I will not waiver in my support of the Cystic Fibrosis Foundation, which gives us the hope of more tomorrows!
As parents of a child with a devastating disease like Cystic Fibrosis, we feel a responsibility and drive to fight this disease with everything in our power.
It is not easy to call, write and email people, asking them to donate, walk with us and show their support. I don't necessarily like to do it, but it pales in comparison to all that Crosby and other CFers have to do in a day that they don't like.
Crosby looks like a normal, healthy 3 year old. What most people don't see is the hours that we spend on a daily basis administering medications and doing different therapies. You don't see him fight and cry twice a day, every day, when we have to force him to stop playing in order to do his Vest treatment to keep his lungs clear. You don't see the 20+ pills a day he takes in order to by able to absorb nutrients from the food he eats.
People ask me what they can do to help. What we need the most is a cure for CF. I don't want Crosby to have to face what this disease can do as he gets older.
Please help us by donating to the Cystic Fibrosis Foundation in their research for longer, healthier lives for CF patients. No amount is too small! Seriously, it's not.
Remember the starfish story? The one about the old man who asked the young man why he was throwing the starfish that were stranded on the shore after a storm back into the ocean. And the boy said that if he didn't, they would die when the sun got too hot because they couldn't do it by themselves. And then the older man laughed and said that there must be thousands of starfish on the beach and told the young man he wouldn't be able to throw enough back to matter. Then, the young man picked up another starfish, threw it into the ocean and said: "it mattered to that one".
Every. Dollar. Counts. It matters to me. It matters to Crosby. And it matters to all of the CF patients and families that directly benefit from those dollars that go to research.
The Great Strides Walk in Little Rock this year is Saturday, May 20th at 8:00am.
Please consider donating to the Cystic Fibrosis Foundation and join our fight for A BRIGHT FUTURE WITH CF!
http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=58281&pg=team&fr_id=5918
With all my love,
Carmen
