Great Strides 2016

HELLO FAMILY, FRIENDS AND FANS!

(It has been so long since I have blogged, I had almost forgotten the website and password to The Crosby Show. Which is shameful, because we were so grateful to all of the support we received!)

The Crosby Show was THE TOP FUNDRAISING team this year with over $11,000.00. We were so excited. We had 71 people come out to support us and many more "spirit walkers" who donated.

THANK YOU, THANK YOU, THANK YOU!!

Before I post the pics from this years walk, I did want tell you that Lance and I will be chairing the 2017 Great Strides!!! Registration is now open, so save the date of MAY 20, 2017 and register here:
GREAT STRIDES - THE CROSBY SHOW

THE CROSBY SHOW TEAM  - WALKING TOWARDS FREEDOM FROM CF

The Aclin Crew

Aunt Natalie and Baby Ford

These two set up an awesome Give-Back night at American Pie Pizza (pictured below in 2 pics)! Thank you Hallie and Josh!

As my friend Misty said, "Follow those pants!"

THE PARKERS

Heidi and Miss Gray

Misty and Keith's kiddos: Audie and Vada (and friend)

So happy my 501 Crossfit crew came to support us!

Tokarz crew from 501 Crossfit

501 Crossfit's Leader Rusty and Eli

Dana, Seth and Dean!!

Kathleen, Sammy, Robert and Kelly (some of the Lochridge Clan)

The next set of pics are from the awards ceremony where The Crosby Show was recognized as the Top Fundraising Team and the torch was passed from Haskell Anderson (we bow down to the thee!), the chair of the Walk for the past 14 years to Lance and I! Also pictured is Amanda Hodge. Amanda was an integral part of the Foundation, a dear friend, and really just a super special person. She's moved on to another adventure but we appreciate all she did for the Foundation and for our family. Amanda, we love, we'll miss... don't forget about us!!!

Lance and I are really excited about Great Strides 2017 and we hope to see you there. Our little FIGHTER thanks everyone for all the support.

For past Walk re-caps (see below)
Great Strides 2014
Great Strides 2015

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!

Team Crosby Show - Freedom from CF

Dear Family, Friends and Fans of The Crosby Show,

Have you signed up to join The Crosby Show at the Great Strides Walk benefiting the Cystic Fibrosis Foundation on Saturday, May 21st?

To register or simply show your support for our team, please follow this link:

Great Strides - The Crosby Show

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. So grab your best 'Murica outfit, sign up today, and join The Crosby Show!!!

Saturday, May 21st at 8:00AM

The Little Rock ZOO

Great Strides - Cystic Fibrosis Foundation

As parents of a child with a devastating disease like Cystic Fibrosis, we feel a duty and responsibility 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 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 2 year old. What most of you 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. Instead of visiting with friends for cookouts and birthday parties, we stay home to avoid exposure to germs. 

People always 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.

I'm asking for your support this year as we walk for a cure. 

I'm asking you to sign up to walk with us and to share our story and fund raise with us. 

I'm asking for you to help us find the cure for Cystic Fibrosis - FREEDOM!

The walk in Little Rock this year is Saturday, May 21 at 8:00 am.  Ask your neighbors and friends if they will support you in supporting us. Raising money to support the search for a cure is the only way that we will get what we want - a life free from Cystic Fibrosis.

Make sure you register under team The Crosby Show. I will support you however I can in your fundraising efforts. 

If you are unable to join us in our fundraising this year but want to make a donation, you can do so by visiting our Great Strides Page. We truly appreciate you taking time time to read this note and any and all support that you can offer.

Love,

Carmen

On Grief and Missing Him

When we lose someone we love, it seems that time stands still.

What moves through us is a silence… a quiet sadness…

A longing for one more day… one more word… one more touch.

We may not understand why you left this earth so soon, or why you left before we were ready to say good-bye.

But, little by little, we begin to remember

not just that you died,

but that you lived.

And that your life gave us memories too beautiful to forget.

We will see you again someday, in a heavenly place where there is no parting.

A place where there are no words that mean good-bye.

{Irish Funeral Prayer}

My dad died 3 years ago today. While 2 years ago I wrote that 1 year didn't seem possible, it now sometimes seems like he has been gone longer than just 3 years. So much has changed. Just as I have done for the past 3 years on his birthday and the anniversary of his death, I am choosing to carve out a little space for him here. 

Grief is definitely an individual journey and one person's path cannot be compared to another's. Three years out, I can say that my grief is no longer as intense or sharp or as all-consuming as it once was. There is still pain; but there is also beauty in the memories. For a long time after his death, I was just so mad that Dad passed away before Crosby was born, that missing him was all I could think of. I sat around making lists of things that he would never experience or that Crosby wouldn't experience with him. I despaired in how my life could be full, when his was over. 

In the past, I have written about how I longed to see God's hand in loosing my Dad, but that I just wasn't there yet. I am probably still not there, still a work in progress, but I do see how Dad dying not only changed my life forever, but that God is using it to change me. I'm still processing these changes and my thoughts on it are probably too jumbled up to try and make sense by writing them out. Easter was just this past weekend and I know Jesus took on pain and suffering so that I can see my Dad again in Heaven. Loosing Dad sparked a longing me that has probably been there all along, just underneath the surface. My grief has allowed me to form a cohesive conclusion about that longing: This world is impermanent, fleeting, and someday, when the time comes, I want to get to go Home too.

My Dad wasn't just a great dad, he was one of my closest friends. Dad was funny and sensitive, yet he also had an edge that you knew came from deep wounds and quiet pain. He was a strong man that had endured so much, yet I also saw his moments of weakness. He was humble, but would ask you to repeat a compliment multiple times with a smug grin on his face eating it up over and over again. He had an absolute sense of what he viewed as right and wrong, but I could tell him anything and even if we disagreed, I was able to walk away feeling heard. Dad had a struggle with addition but was able to see firsthand the beautiful side of recovery. And he used that to help others. Hundreds of people showed up at his funeral and spoke about the positive impact he had on their life and the change for the better he inspired in them. Dad was complex and a beautiful example of the dueling qualities that co-exist in all of us.

My Dad died; but more importantly he lived.

Having him as my father was one of my greatest blessings. And I know that goodness has, and will, come from loosing him too.

I miss you everyday, Daddy. See you in the movies.

Love,

Your Princess

CF Diagnosis

Last year, the Arkansas Children's Hospital Cystic Fibrosis Center Coordinator contacted me about participating in a video that could be shown to parents after they receive a positive newborn screening for CF. 

As background, newborn screening is a nationwide program to find babies born with certain health conditions, including cystic fibrosis. The Cystic Fibrosis Foundation was instrumental in passing legislation in all 50 states to screen newborns for CF, because early treatment may prevent serious, lifelong problems. If you have a baby in Arkansas in a hospital, they will be heel pricked and screened for 28 serious genetic diseases before you are discharged.

A positive newborn screening result indicates that a baby might have CF and that further testing through a sweat test is required in order to rule out or confirm an actual diagnosis. 

By diagnosing CF early, CF health care providers can help parents learn ways to keep their child as healthy as possible and delay or prevent health problems related to CF. Early diagnosis and treatment can improve growth, help keep lungs healthy, reduce hospital stays, and years to life.

While we are extremely grateful for the newborn screening that ultimately led to Crosby's diagnosis at 15 days old, it wasn't easy to receive news that your baby has a potentially fatal genetic disease. The team at ACH and the Cystic Fibrosis Foundation have procedures, programs and information in place to help parents like us.

I wasn't able to participate in the video because of a work conflict, but Lance did. I think the video is fabulous and truly give an accurate picture about what parents of newly diagnosed CF babies experience. And, I think Lance was terrific!

Check it out!

(If you are viewing this on your phone or in an email, the video clips may not appear. The links are below).

The next video goes into a lot of detail on the actual sweat test. Feel free to watch the whole thing, Lance's portion starts at the 8:15 mark.

https://www.youtube.com/watch?v=gZzCQ3ux_vE

https://www.youtube.com/watch?v=CYx4grpGil0    

The CF Foundation has made amazing breakthroughs in research and treatment development in the past 5 years. I am confident that in Crosby's lifetime there will be a CURE for CF. We are on a crusade to raise money for the foundation in their pursuit for a cure, so that one day, no parent will feel the devastation Lance and I felt on October 3, 2013. If you want to help, please consider donating or joining our Great Strides Walk for CF here: 

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

Love,

Carmen

Support CFF

Turn your face to the sun

And the shadows fall behind you.

{Maori Proverb}

Cystic Fibrosis is definitely an ever present shadow in our lives. When I think about the darkness that comes with the diagnosis, the "terminal illness" classification, all of the complications, all of the struggles, all of the doctor visits, medications, isolation, all of the CFers out there that suffer and struggle, those that have lost their battle, I can get overwhelmed in sadness and lost in the shadows.

Acceptance took some time, and while CF is always there, like an ever-present black cloud, we choose to turn towards hope. Hope for more tomorrows. Hope for a cure. 

I cannot say enough about what the Cystic Fibrosis Foundation has done for our family in providing hope for Crosby's future. Knowing what the CF Foundation does in the fight against CF, including accomplishments in research, care, advocacy and fundraising to fuel its lifesaving mission, has been a ray of sunshine since facing Crosby's diagnosis. Did you know that every medication and treatment that Crosby has taken or currently takes was developed by the CF Foundation from private donations like yours?! And there is so much more in the pipeline, but the Foundation relies on our support to fund research and development for treatments and one day, A CURE!

We hope you will join The Crosby Show this year at the Little Rock Great Strides Walk benefiting the Cystic Fibrosis Foundation!

When: MAY 21, 2016

Walk: 8:00AM

Where: Little Rock Zoe

You can join our team by clicking this link and signing up:

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

I love the photo above of Crosby with the sunlight on his face and the shadows behind him. He catches the sun, but he doesn't know he's the light of my life.

Thank you for your support friends. See you on May 21st?!?!

Love,

Carmen, Lance and Crosby

Now is Now

They come through you but not from you,

And though they are with you, yet they belong not to you.

You may give them your love but not your thoughts. 

For they have their own thoughts.

You may house their bodies but not their souls,

For their souls dwell in the house of tomorrow,

Which you cannot visit, not even in your dreams.

You may strive to be like them, 

But seek not to make them like you.

For life goes not backwards nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.

- Kahlil Gibran

While my head knows he will grow up to be his own person, forging his own path...

My heart will never forget the moments I was able to hold him this close and feel, even fleetingly, that he was mine.

Now is now. And I am grateful.

Love,

Carmen

Holiday Review

The holidays have come and gone and now 2016 is here. In fact, we are half way into the first month of a new year and I am just now posting about our December. But, it was a good one. We had lots of family time and that was the very best part of all.

Decorating the Tree

Max, Tucker, Addy holding Lakelyn, Harper holding Crosby, Lauren holding Ford, and Lila

The Mommas of all those kids in the previous pic!

Hogs bball date night.

Taking Christmas flowers to Great Granny

Sunrise pic on a winter morning run.

Coming home after a run to these two in my bed!

"Go see Pappy in heaven" 

Christmas morning pjs!

Home made cinnamon rolls. Recipe here

CF doesn't take a break on Christmas, and neither do we. But Croz got some help during vest treatment from a new friend!

Best 9 of 2015 on IG

Happy New Year Friends!

Love,

The Crosby Show