Fear and Hope and Thank you

Fear.
I hate the word and what it represents for me.
There is a fear that has regularly stopped me in my tracks for the past 5+ years.

From the day Crosby was diagnosed with cystic fibrosis, I have had to live with the reality that one day, I may watch him lose his fight. The moment that I laid eyes on him, I could not fathom my life without him in it. And when he was 15 days old, I had to try and process the dark cloud of statistics that looms over a CF diagnosis. I have been forced to think about the fact that even if he is lucky enough to surpass his life expectancy, I may likely still spend countless days watching him suffer while I stand by, helpless. The statistics tell us that less than half of CF patients live into adulthood.

I think of all the pills taken and hours spent daily on treatments for Crosby to maintain health. I think of all that CF can bring as the disease progresses: CF related diabetes, feeding tubes, ports, bacteria cultures than can’t be fought off by antibiotics. I carry the heartbreaking reality that he will likely at times fight for his every breath. And it terrifies me to think about how he will process these things for himself mentally.

I am most scared that one day, he will be gone and I will be alone with regrets. I’m afraid I will regret I didn’t take more chances or make more sacrifices to make his wildest dreams come true. I’m afraid I will regret that more days and dollars were spent trying to do all we could to keep him healthy, rather than just spent living.

That same fear also manifests as guilt for even being fearful in the first place – because I do have hope! It is just that Crosby is my baby and it is so heartbreaking to not be able to take this burden from him. I know that CF or not, nothing is ever guaranteed in this life and the only way to live is not let the fear take hold and squeeze out the hope.

Thank you to everyone who hopes, prays and fights for a cure along beside us. As CF awareness month comes to an end, I’m reminded that we are not alone in our fears nor or in our hope. Thank you for for your support and thank you for loving Crosby.

Until. It’s. Done.

Carmen

Running for CF

Growing up, I always wanted to be good at sports. I played basketball, volleyball, tried gymnastics, and swam on the swim team.  I went to all the practices and worked on skills at home. At games and meets I would hustle and pour my heart into trying to do my best. But, I was never very good at any sport I tried. I really wanted to be good and while I consider myself somewhat athletic, I just wasn’t ever a good ball handler, very fast or particularly great at any sport I tried. 

I started running in college for fun and discovered that I loved it. Like most of my past sport endeavors, try as I might, I’m also not a very great runner. My PRs are not impressive and even though I’ve been running for the better part of 16 years, I never have and never will qualify for the Boston Marathon. The thing about running though, is you don’t have to be very good or very fast, you just have to do it! I’ve ran 5Ks and 10Ks, relays, half marathons, full marathon and even a triathlon. 

I like running and I like training and I love getting to do it with other people. Lance and I’s relationship began with running. Then we planned our entire wedding during runs together and we could usually talk and workout any problems on a run. Crosby joined us on our runs as soon as he could hold his head up and reached the minimum weight for the jogging stroller. We’ve ran races pushing Crosby and before he hit 35 pounds, he regularly hit the pavement with us.

The New York City Marathon is arguably the most popular marathon in the world. Most runners are selected to participate by lottery. You apply, pay and then leave it up to chance to find out if you get in. Lance and I said years ago we would love to do it together, but the odds of both winning the lottery the same year are not good. The other way into the NYC marathon is to run for a charity, so when we found out several years ago that the Cystic Fibrosis Foundation has a marathon team, we reached out and put our names on a long waiting list. Last January, we got the call.

So here we are in 2018 and the girl who was never very good at any sports is, God willing, going to get to run the New York City Marathon. Not only am I going to get to run it with Lance and some of our very closest friends by my side, but I’m going to get to run it in honor of Crosby, for the charity that is near and dear to my heart. I’m going to run 26.2 miles through New York City with Crosby’s name on my shirt and wearing a Cystic Fibrosis Foundation Breathe Team bib! I am nervous, I am excited and I am incredibly humbled that we get to do this!! This is a once in a lifetime opportunity and I am so very grateful.

Thank you to everyone who has supported us the past 6 months in our fundraising! Every single dollar donated goes directly to the Cystic Fibrosis Foundation. In order to run the marathon for a charity, you have to raise a minimum dollar amount for that charity. (Just so there is not confusion, the money does not go to the marathon itself or towards our trip to NYC ). Our collective goal we need to hit is $20,000! We have not reached that yet, but have two more fundraisers coming up:

Saturday, October 6th – Fish Fry Fundraiser

Good Ole’ Down Home Fish Fry with all the Fixins 

4:00 – 6:30 

11500 Willow Beach Road, NLR

Suggested Donation: $20.00 per plate

RSVP to 501-680-7090

and then:

Friday, October 12th – Poker Night

Hosted by The 1836 Club

$100 Buy in

Online donations can be made at www.crowdrise.com/thecrosbyshow

Thank you for your support! We won't stop fundraising for a cure... UNTIL IT'S DONE!

CF, a Starfish, and Great Strides

We are continuing our efforts to support Cystic Fibrosis Awareness Month!

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