Christmas and Great Strides

The Cystic Fibrosis Foundation's largest fundraiser, Great Strides, is in Little Rock on May 21, 2016 this year. SAVE THE DATE. 

Please join the Crosby Show team by clicking ---> http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=46609&pg=team&fr_id=5060

By registering and donating you will be giving Crosby the best gift he could receive - hope for more tomorrows!

I have talked about Cystic Fibrosis being called an "orphan disease" because so few people have it. This means that the value to pharmaceutical companies to invest money in new therapies and treatments just isn't there. Developing a single new drug can cost a billion dollars, so pharmaceutical companies want to create blockbusters for common diseases to maximize the return on their investment.

The Cystic Fibrosis Foundation came up with something called "Venture Philanthropy", where they invest our fund-raised money with the pharmaceutical company to do the research and create the drug, absorbing the early financial risk involved in drug development as a way to entice for-profit companies to get involved in cystic fibrosis research. Amazing things are happening. There are now two drugs on the market, Kalydeco and Orkambi, that target the underlying cause of CF for about 54% of the CF population.  Because of this successful business partnership, the CF Foundation has invested another $75 million toward finding a cure for the other 46% of the CF population. 

Although Crosby does not benefit directly from the use of Kalydeco or Orkambi because of his specific gene mutations, the picture is much brighter as we learn more of the significant impact both drugs have on those who do benefit from them and the science behind the breakthrough represents far greater confidence and progress than we have seen to date..  We know we are close and we are committed to running through the finish line…and then throwing the greatest party of all time! 

I have asked God many time to take CF away from Crosby. But I also ask for His will to be done, not mine. Despite the devastation of this disease, we know that God has a plan for Crosby and our family. We are thankful for the medicines and medical advances made each year in large part by those who support the CF Foundation through fundraisers like the Great Strides walks. 

Lance and I are so thankful for all our friends and family in joining our journey of faith and fight against this disease. We have some exciting things planned for fundraising in 2016!

Join the Crosby Show's Great Strides team today, for this guy:

With all my love,

Carmen

Dad's Birthday

Today is my Dad's birthday. I'm not quite sure why it being his birthday stings, but it does. I guess I just miss him and the date is a glaring reminder that he is not here.

Most days, I'm happy and productive and I think about my Dad with a smile on my face. Other days, I wake up from having a dream about my Dad and I'm moody as hell. Some days, I nearly forget that my father died at all. Other times, I'm angry that people who are twice my age still have their fathers. Or I'm resentful of people who are my age who take having their dads around for granted. Once, I silently cried at my desk at work while I overheard a coworker talking to his father on the phone. When older people who have lost a parent reached out to me and told me they understand, I appreciated the sentiment, but they can't possibly understand the full depth of what I experienced. Losing an elderly parent after your own children are grown is not the same thing as losing your dad before your children are born.

A while back I bought the sweetest little book for Crosby, Wherever You Are: My Love Will Find You by Nancy Tillman. My Dad understood the importance of explaining to your children (to everybody, really) the unconditional and immeasurable love you have for them. He did that repeatedly and consistently for both me and my sister (as did my Mom!). I think that is his legacy. I am so grateful  that my parents loved me powerfully, unconditionally. No matter what challenges I face, that is source of confidence. I hope I am passing that on.

Here is some of the beautiful, moving text and if I close my eyes, I can hear him saying the words:

I wanted you more

than you ever will know

so I sent love to follow

wherever you go.

It's high as you wish it. It's quick as an elf.

You'll never outgrow it...it stretches itself!

So climb any mountain...

climb up to the sky!

My love will find you.

My love can fly!

...

And if someday you're lonely, 

or someday you're sad, 

or you strike out at baseball, 

or think you've been bad...

just lift up your face, feel the wind in your hair.

That's me, my sweet baby, my love is right there.

...

If you're still my small babe
or you're all the way grown,
my promise to you
is you're never alone.

You are my angel, my darling,

my star... and my love will find you,
wherever you are.

~ Nancy Tillman

Happy Birthday, Daddy.

Love,

Your Princess

Fall Recap

We have had a busy fall and I thought I would do a picture post to recap what we have been up to.

If fall means football, we've definitely been in the spirit. We've gone to the NLRHS home games and of course not missed a Saturday Hogs game!

 

Crosby can call the hogs and is very into "Football Game." He was a little confused during the World Series and when we corrected him that it was a baseball game on TV, he would say "Base-football Game!"

First donut ever. Clearly a spiritual experience.

Neighboring tailgate had a huge cake on a table. Bad idea on their part. Little hands found the red icing.

Crosby had a good check-up at the CF Clinic. All of his team members were impressed with his appetite and vocabulary! He really does talk all. the. time. My favorite is when he puts his head on my shoulder, then lifts his head, looks me in the eye and says, "Mommy's sweet baby?" Yes, little handsome, you are my sweet baby!

Our friend Addy turned 6 and Crosby went to his first skating party. 

Lance and I had a quick getaway to Savannah. 

The Breath of Life Gala benefiting the Cystic Fibrosis Foundation was in mid-October. It was the largest Gala yet and such a wonderful evening. I believe the event raised over $175,000 for CF!! Huge thank-you to my friends who donated silent auction items! And thank you to the Aclins for your support - enjoy the dart board and your new closet!

Lance had his wisdom teeth out. I had my phone ready to film him coming off the anesthesia, but really all he did was sign-language.

Happy Halloween from the Smith family: Mugatu, Derek, and Hansel (she's so hot right now). If you haven't seen Zoolander, Netflix that before the sequel comes out. You won't be disappointed. 

This dad is a trooper and I have to give a shout-out to my BFF's costuming skills. Two different parties, same cutie pies!

Max had a very scary werewolf costume and Crosby was terrified of him! Crosby wouldn't get in the trailer for the hayride, so Max had to ride in the back of the pickup for trick-or-treating! 

We took a weekend trip up to see my Uncle Gill on the White River. Crosby mastered his rock throwing there and on at our Buffalo River stop on the way up.

We have had some wonderful family time and I am really looking forward to the Holidays.

Much Love,

Carmen

Hibernating

Dear Family, Friends and Fans of the Crosby Show,

Cold and Flu Season has begun!

I wrote a similar post last year, but I think this is an important message many families with CF kids and others with complex medical needs understand all too well. I know it is hard for friends and family to understand why we are so adamant about trying to keep Crosby healthy. This picture maybe hard to look at, but it is a reality and a great explanation of why we do what we do. (Disclaimer: This is not a picture of Crosby)

This is the time of year that Lance and I shut things down and do not take Crosby out much for fear of catching that cough or cold that others deem "harmless". Please, if you are feeling under the weather - stay home - you're less productive and more likely to extend the length of your illness when you don't take the time to care for yourself first. And if you find that you have to venture out, wash your hands of germs frequently and cover your coughs and sneezes. Your perceived time lost could be real time lost in the life of a child and their family.

There is NO such thing as "JUST A COLD" for CF patients. Please understand that we do not take Crosby many places this time of year and we do not allow sick people or any children in daycare or school to be around Crosby. Simple cold viruses can lead to hard-to-get-rid-of infections, and infections in small CF lungs could have life-long damage. 

I realize that colds are not a big deal for most people. Colds use to not be a big deal to me. I have someone super special to protect and I will do ANYTHING to help him stay healthy and stave off lung damage for Crosby.

Because so many of us have the attitude that "a little cold" shouldn't keep us from going to work or sending kids to school, it is very easy for all kinds of germs to spread. I am beginning to realize just how selfish those actions can be for those who have compromised immune systems or diseases like CF. For those people, a "little cold" could have life-altering consequences. I am also aware that unfortunately, way too many people have bosses or teachers who are not understanding or lenient when it comes to calling in sick. If you find yourself forced to go into work or school while sick, while maybe awkward, wearing a mask is a great way to keep from passing the germs on. As for other things like church, parties, get-together, even going to the grocery store... I do not believe there is any other obligation that is worth spreading germs to kids like Crosby or their care-givers. Please be considerate.

So please, please PLEASE be conscientious as we go into cold and flu season. Lance and I love all our friends and we love all our family, but as the Holidays are fast approaching, if you have any symptoms of a cold or the flu and we are going to be in the same place, please let us know. We don't expect everyone to alter plans because of us, but we do expect you to let us know that kind of information so that WE can make an informed decision on where we go and where we take Crosby. It is OUR decision, please let us make it by telling us if someone who is sick will be in attendance. We would certainly never shame or embarrass anyone for a cold, we will simply just choose to stay home. 

If you are sick, please do not come to our home. 

  

If you are sick and are going to be at a get-together where we will be, please let us or the host know. 

  

If you come to our home, please immediately wash your hands and use hand-sanitizer. 

  

Do not bring kids who are in daycare or school around Crosby during cold/flu season. 

  

Do not kiss Crosby or get in his face, whether or not you have any symptoms. 

  

And please, GET YOUR FLU SHOT. 

We ask that everyone who knows and loves us to PLEASE be sensitive to the other people around you who might have compromised immune systems or have family members who do. 

Your willingness to help keep medically complex children germ-free might be the only thing standing between them and the hospital this winter.

Love,

Carmen

That life-sustaining love

I was recently chasing rabbits down holes of the internet and stumbled upon an interview with Elizabeth Smart. She was talking about her foundation for children who have been victims of violent crimes. She also spoke openly about her kidnapping, the 9 months she spent captive, and her eventual rescue. When the interviewer asked what the secret was to her survival, she answered without hesitation that it was the love of her mother.

Elizabeth explained that during her darkest hours under the control of  an insane, cruel man, she kept remembering the words of her mother: I will always love you. No. Matter. What. Her mother had often told her that she would love her no matter what she does, where she goes, or how many mistakes she makes. During her capture, Elizabeth often thought that no one would ever want her, even if she was rescued. She said at one point that she was ready to give up because she felt dirty and worthless. Then she remembered her mother's promise that she would always love her and that gave her hope. Elizabeth thought of her mother's words and decided that was worth living for.

Talk about inspiring! The love we pour into our children is life-sustaining. The love we give to them on a daily basis, can later carry them out of darkness.

This story also made me think of a friend of mine whose little girl has spent much of her first 3 years, fighting for her life. Emma and Jerilyn are two of the toughest, bravest chicks I know. Jerilyn always talks about Emma being her hero, smiling through the pain and Emma's sheer determination to survive. I can't help but think in all those scary moments where Emma defied the odds and said, "No, not today. Today, I keep going," that she mustered that last effort that turned it all around from looking at her Momma's face and seeing and feeling all the love that Jerilyn pours into her. It's life-sustaining I tell ya!

I want Crosby to always know that no matter what, I will always love him. So I am going to lay it on thick everyday. I'm going to look into his eyes, hug his neck, cup his cheeks, kiss his lips, hold his hand. I'm going to touch his heart.

And hopefully, someday, when it matters most, he will hear my voice in his head. Maybe he will be on the cusp of a life-changing decision. Maybe he will be fighting his way back from illness. Maybe he will be deciding, like Elizabeth or Emma, to survive. No matter what the circumstance he finds himself, I hope he remembers, I will always love you. No. Matter. What.

Love,

Carmen

2015 Xtreme Hike

The Cystic Fibrosis Foundation's Xtreme Hike program came to Arkansas this year and took hikers through the beautiful Petit Jean State Park to raise funds and awareness for cystic fibrosis. 

This was the first year for the Arkansas Chapter's Xtreme Hike. It is a pledge based fundraiser and the weekend's events were hosted at the Winthrop Rockefeller Institute. 

Lance and his brother Scott are participated in the hike and Uncle Cot and Aunt Rara were co-chairs of the event.

The hike ended up being 17.3 miles total and took the hikers all through Petit Jean mountain. Crosby and I went up for the weekend too and we even got a 3 miler in and met up with the hikers at Cedar Falls. 

This was a fabulous event held by the Foundation and I am so grateful to Scott, Tara, Amanda, Misti, Melody and all the volunteers that helped make it such a success!! 

I don't know how much the event raised in all, but I do know that the Crosby Show team raised over $8,000.00! Thank you to all our fans and supporters!!!

Amanda from the Foundation kicking off the weekend!

All the hikers!

Crosby and I at the start of the Cedar Falls trail. It's about a 3 mile hike round trip. I was trying to meet up with hikers at the falls.

30 pound sack of sugar on my back! It was a workout.

We were able to meet up with Daddy and the hikers!

17 miles later... Finished!

 

What a wonderful way to support the Cystic Fibrosis Foundation!

We have one more event this year. The Breath of Life Gala is on Saturday, October 17th. The evening includes a live and silent auction, cocktail hour and plated dinner, and live music. The Gala welcomes nearly 400 guests and funds raised help support the foundation's research and patient assistance and care programs.

Lance and I will be attending. If you would like to join us, tickets can be purchased here:

https://arkansasbreathoflifegala15.eventscff.org/

Thank you to everyone who supports The Crosby Show.

Love,

Carmen