Freedom From CF

The Crosby Show Team theme for Great Strides is "FREEDOM FROM CF" because we are walking for cure in hope that one day, we will all be "free" from this devastating illness. We hope to see everyone on Saturday in their best red, white and blue. If you haven't registered yet, you can do so here: http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=46609&pg=team&fr_id=5060

Saturday, May 21st at 7:30AM

The Little Rock ZOO

Great Strides - Cystic Fibrosis Foundation

Saturday’s weather is looking great this year! I know this post is long, but it contains info you are going to wish you knew on Saturday – so bear with me!

For those of you coming out, here is some important race day information: 

Registration

• Parking is available across the street from the Main Entrance. Additional parking is available in the East Parking Lot (on the corner of Monroe Street / Zoo Drive).
• Please get there early! Registration is from 7-8 am (by last name) and I am asking everyone on The Crosby Show team to be there by 7:30. 
• ALL WALKERS MUST CHECK IN. Even if you have pre-registered online, we still need to verify your attendance at the Registration Center. We have a new check-in process this year, to hopefully alleviate the bottle-necking in years past. If you raised $100 or more, you will receive a ticket for a t-shirt to take to the t-shirt table and cash in!
• If someone did not pre-register for the walk, they are still able to register onsite at the Registration Center. This includes those of you who didn't sign your kids up on the website but are planning on bringing them.
• FYI - For each person who comes to walk, CFF pays $5 to the zoo. While the event is free, if you have not donated yet, please consider donating $5 or more to cover the cost.  
• Anyone that arrives after 8 will need to pay the regular Zoo admission fee ($12/adult, $9/child). This is the Zoo’s rule, not CFF.

Team Stuff

• Wear your red, white and blue gear to show that you are walking for Freedom from CF and so that everyone knows you are with THE CROSBY SHOW! 
• Team photos are different this year and all teams have been assigned a time. The Crosby Show’s photo is at 7:45 so please be in the photo area by 7:40!!! After you sign in, grab some breakfast and head over to the left hand corner of the lot.
• Breakfast will be provided by Chick-Fil-A and Sonic. Soft drinks, coffee and water will also be available. However, the food goes fast, so be there early to make sure you aren’t left out!
• The program will begin at 8:10am. Our walk goes around the perimeter inside the Zoo twice.

Awards

• The ceremony is at 10 am in the Zoo Amphitheater for final announcements and awards.
• I know it’s Saturday and everyone has places and things to do but please consider staying for the Team Awards. Our team has usually dispersed by then, but we would like for you to stay if you can/will! Pretty please?

To FREEDOM!!!

-Carmen 

CF Awareness Month

May is National Cystic Fibrosis Awareness Month!

I have a lot of posts covering CF, so if you want to learn more, click here to see all my Cystic Fibrosis related posts. And here are some specific links below:

A Bad Word

An Orphan Disease

CF Facts

Genetics of CF

On Having a Baby with CF

CF Diagnosis

Orkambi

Bopping 

Kalydeco

CF @ 9 Months

Just like every CF patient's journey with the disease is different, every family's journey battling the disease and coping is different. Lance and I try very hard to live life as normally as possible. And, while I think we do a fairly good job, Cystic Fibrosis is always there in our minds, that ever-present thought that you just cannot ignore. 

We have been very thankful that we have kept Crosby healthy and his CF under control thus far. However, we know enough that we are fully aware that could change in an instant. Every virus, every exposure has us holding our breath, wondering how his body will handle it or what is next or when will the sky fall out. Hoping for the best, but preparing for the worst is a stressful place to be. 

For now I take solace in the fact that Crosby is too young to know what CF is or that he is different. For now, Lance and I carry that burden for him. But my heart aches for the day when he realizes that not everyone takes enzymes to be able digest their food and absorb nutrients. I hurt to think of the day he realizes that he is different from other kids and resentment that he will feel. My heart aches for the day he realizes that he has a disease that is classified as terminal and I have to explain mortality to my child. 

I have heard CF called the "Beautiful People" disease. Looking at Crosby, you would never know that he has the most common fatal genetic disease in the U.S. But Crosby is fighting it every day. We fight so that he will remain healthy. We fight so that he can live. 

CF is ugly. CF is inconvenient and exhausting. CF is unfair and hurtful. 

We need a cure.

Please consider donating to the Cystic Fibrosis Foundation and join our fight! 

Click below and join our Great Strides team by signing up for the walk or making a donation.

http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=46609&pg=team&fr_id=5060

Love,

Carmen

P.S. In honor of Crosby and CF Awareness month, for the entire month of May, my friend Rachael over at Razzlewraps is donating $1 of the price from every wrap sold to the Cystic Fibrosis Foundation!!! Her baby head wraps are so unique and so cute and I am so very grateful she is supporting us in this way. Please check out her store here: http://razzlewraps.storenvy.com/ and follow her on IG here: https://www.instagram.com/razzlewraps/ They make fabulous baby gifts!