CF Awareness Month 2020

Every May, we celebrate Cystic Fibrosis Awareness month and pandemic or not, May 2020 will be no different! Last year, Lance, Crosby and I were honored to represent the CF community at the Arkansas Capitol where Senator Missy Irvin sponsored a resolution declaring May as Cystic Fibrosis Awareness month.

We encourage you to take the time this month to learn something you did not already know about CF or share what you do know about CF and your buddy Crosby with someone else.

As you have probably already guessed or heard, Great Strides is postponed due to COVID-19. The Arkansas Chapter of the CF Foundation has announced a new date for Little Rock Great Strides - October 3, 2020! Lance and I are choosing not to fundraise at this time, but please mark your calendars and plan to join us in October at the LR Zoo! 

Lance and I have had so many wonderful and thoughtful people reach out to us since the start of the pandemic – checking in, thinking about us, praying, etc. I cannot say thank you enough! This is an incredibly scary time - for everyone. But for those who have recognized the additional impact this has on a family with Cystic Fibrosis – thank you for seeing us and letting us know you have thought about us. It has meant so much. 

We have been asked (a lot) if we’re scared of the coronavirus. But the truth is, we have lived with the threat since Crosby was diagnosed with CF. Of course, the threat hasn’t always been COVID-19, but for the past 6.5 years we’ve had to take the same precautions that everyone else has just started taking the past 8 weeks. We wash our hands constantly, disinfect everything, social distance, avoid crowds, cancel trips and activities, and weigh every decision on what the impact could mean for Crosby’s health. When lock downs across the country first began, Lance and I both said how a lot of this reminds us of Crosby’s first year and how hard we worked to keep him isolated and give his lungs a chance to grow without being impacted by infection. 

So, have we been scared? Maybe a little. But that’s the life we live everyday having a child with CF. So many unknowns, so many rules and restrictions. Staying home when we want to go out, not having friends over, saying no when the tears in Crosby’s eyes are begging me to say yes. We have to approach every decision by thinking, are we doing the best that we can do? I don’t want something to happen and look back, regret a decision and then have to say, well I could’ve done better. When given the choice to follow the rules or potentially lose my Crosby, there really is no choice.  

I know we are all ready to get back to a more normal way of living. But as we start to go back to places and activities, please remember we need to still protect not only ourselves and families, but we also need to protect those most vulnerable. It may not mean much for you to get a virus, the flu or even a cold, but it could mean hospitalization, serious complications or even death for others. 

Please continue to take the time to wash your hands A LOT. Please stay home if you aren't feeling well and keep your kids home when they aren't well. And please please PLEASE wear a mask when you go out in public. Not because you are required to, but because of your love for your neighbor – the kind of love that God calls us to have for one another. Your mask protects others. Wearing a mask is simply just being considerate. No one is asking you to live this life forever. Please do the right thing. Remember, when this pandemic is over, social distancing and masks will still be the norm for some people:

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!