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