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

Christmas Eve

When they saw the star, they were overjoyed beyond measure...and falling to their knees, they worshiped Him.

{Matthew 2:10-11}

Merry Christmas, from the Crosby Show. 

Last year, I wrote about hope. I wrote about how Crosby reminds me to have hope. I clung to the thought of that because the hope of him helped ease the pain of the empty seat at the holiday festivities, the person that was missing. Crosby gave me something to be thankful for, but a grateful heart still doesn't fill that empty seat.

All my life, I can remember feeling a little sad around the Christmas season, even as I child. Of course I can remember the feelings of magic that came with anticipation of Santa, memories of family traditions, the excitement of Christmas Eve. But I also can remember worrying and wondering about the children that Santa didn't visit. I remember worrying if the elderly man at church, who always sat alone in his pew at the upper right corner of the sanctuary, who always came and knelt to pray, was alone on Christmas. I worried about my Granny feeling lonely, after my Granddaddy died, wondering what she was doing when we left after Christmas dinner.

Even now, as an adult, with all my blessings and the life I live, I feel a little sad around Christmas. I hurt for the children and families spending the holidays at Arkansas Children's Hospital, unable to be at home.  I hurt for people that don't have any family and how "the most wonderful time of the year" must make them feel more alone. I hurt for women that have lost babies or women who long to be a mother, and how this season may make their empty arms ache that much more. I think about the people who have lost their job, gotten a cancer diagnosis, and the soldiers serving our country overseas. I hurt for the orphans hoping that this is their last Christmas without a mom and dad of their own.

But I guess feeling a little sad at Christmas is okay. We live in a sad and fallen world. Earth is not heaven. Heartache, death, disease, separation, hunger, loneliness and sorrow don't take a break simply because "it's beginning to look a lot like Christmas." Because, isn't the reason that we celebrate Christmas to begin with is the hope that Christmas brings? Baby Jesus wasn't born to deliver us from the ugliness of the world. Starvation, abuse, death, disease, despair; humans suffered it all before He was born, after He was born and we suffer it even now. Jesus came to us to fulfill a promise that in heaven, there is no more sadness and pain. So I can be a little sad this Christmas, I can hurt for the hurting and I can remember that it is all temporary. It is temporary because all those years ago, a little baby was born into humble circumstances, to change the world.

Long lay the world in sin and error pining

'Til He appeared and the soul felt its worth

{O Holy Night}

So, to all that are hurting, sad, lonely, grieving, scared, I see you. 

To all that are missing someone this Christmas, I feel it too.

But there is hope! He was born and the weary world can rejoice.

Love, Peace, and Hope,

Carmen

Little Mr. Magic & Baby Daddy

Every girl says it, but I'm going to say it again: watching Lance love and take care of our baby is one of the most attractive things he'll ever do. These boys of mine have a special relationship. This is my tribute to that bond. Happy Father's day to my Baby Daddy.

{Adapted from Little Miss Magic by Jimmy Buffet}

Constantly amazed by the blades of the fan on the ceiling

The clever little glances he gives me can't help but be appealing

He loves to ride into town with the top down

Feel that warm breeze on his gentle skin

He is my next of kin

I see a little more of me everyday

I catch a little more of me turning gray

Your mother is still the only woman for me

Little Mr. Magic, what you gonna be?

 

I catch him dreamin and wonder where that little mind meanders

Is he strollin along the shore or cruisin over the broad savannah

I know someday he'll learn to make up his own rhymes

Someday he's gonna learn how to fly

Oh that I wont deny

I catch a little more dialogue comin my way

I see those big blue eyes just start to lookin astray

Your mother is still the only woman for me

Little Mr. Magic, what you gonna be?

 

Little Mr. Magic, what you gonna be?

Little Mr. Crosby, just you wait and see!

Love,

Carmen

Memorial Day

My dad served in Vietnam. He actually volunteered to go. Dad believed in the United States as the greatest country on earth...a country worth sacrificing his youth, worth dying for if necessary. 

Dad made it back from Vietnam but it forever changed him, haunted him.

I honor his service and his life, as I do the service, the lives — and the sacrifices — of all our Armed Forces, the men and women who guarantee our freedom.

There is a quote at the Arlington Cemetery by Randolph Harrison McKim that reads:

"Not for fame or reward, not for place or for rank, not lured by ambition or goaded by necessity, but in simple obedience to duty as they understood it."

And I think that deserves our respect.

We had a wonderful Memorial Day. The Veteran's cemetery where Dad is buried places flags at all the graves for the day. It's so beautiful and reverent. Perfect.

Cinco de Mayo

¡Feliz Cinco de Mayo del Show de Crosby!

I'm into Cinco de Mayo. I love margaritas and Mexican food. Lance and I usually celebrate this holiday and had a good time with Crosby on his first!

We actually had a little bit of a rough week this past week. Crosby's enzyme  dose seemed to have lost efficacy and we were back to having a non-satiated baby with lots and lots of dirty diapers. So upsetting! We've been through this before and knew it was time to increase his dose of enzymes. So a couple of calls to his dietitian and pulmonary doc at ACH ensued and we upped the enzymes. The only problem is we weren't seeing changes afterwards and this new increase put him at the max per day for his weight. No room for any more increases. We were able to adjust some other things, gave it a couple of days, and over the weekend he improved. Crosby is back to being more like himself. Only problem is, now my baby takes 15 capsules a day, in addition to other medications. Fingers crossed this new dose continues to work for him for a while. I do have to accept that this is the road we are on and it will only increase from here. As he grows and gains, we will have to tweak his enzyme dose. Thanks for being an a$$hole, CF! 

So, we needed to relax a little this weekend. Aunt Natalie and hubby John came over to celebrate Cinco de Mayo with us Saturday night. It was really beautiful this weekend, right? I love backporch living and Crosby loves to be outside. I am thankful for warm weather, sunshine, dogs, happy babies, and friends who come lift your spirits when you're needing it. I wish I had taken more pics, but here's what I got:

I think in this pic, Croz is giving John some serious prosecutorial advice, like: "Remember you cannot lead on direct, Sir." And clearly JP is taking in every word!

 

I kinda like her.

Oh, and Happy 6th Birthday to our beautiful black princess, Lucy (Goose), whose birthday is today. I'm so glad Crosby loves his sister dogs and they love him. 

Say CHEESE!!

Love,

Carmen 

Holiday Recap

We had a wonderful first Christmas with Crosby. I tried to appreciate every moment. After all, you only get one first!

Before I get started, I have to give a BIG shout out to my Lochridge Clan family. These people! Love them. Thanks for always being there for me. Through everything. Thanks for loving me. Through everything. Thanks for loving my family. Thanks for loving Crosby. And thanks for what you did to make his Christmas wish come true. Lance and I were truly humbled. From the bottom of my heart, thank you! Love you all. So glad I get to do life with each of you. Ya'll mean the world to me.

Love to Robert, Val, Kathleen, Sammy, Lyndli, Karen Jo, Kelly, and Joey. Not pictured but sending thanks to as well: Ricky T, Henry, Trenton, Brian, and Kim.

We had Christmas Eve at Lance's parents. 

Family picture. Crosby is wearing his Cousin Eddie hat. It was evening, so he was feeling very serious!

Sherrie serving dinner. The table was gorgeous.

Lance, Miss Martha and Crosby's Great Grandfather!

Aunt T and Croz! Tara was sweet and  held Crosby while the rest of us ate.

Pops, Daddy and Crosby. 3 generations of Smith men. How handsome are they?

Christmas morning was just us. Crosby was in a great mood. We listened to Christmas music, opened presents, and drank coffee. It was perfect.

Our Stockings were hung by the chimney with care.

Still a little sleepy while seeing what Santa brought.

Lance helped open Crosby's presents.

He got a mobile!

As you can see, he was absolutely thrilled.

Zoe and Lucy got in on the action too.

 Zoe doesn't need help opening her present.

Christmas Day we went to my Mom's to open presents and eat lunch. It was a little bittersweet. Someone was missing.

Marlee, Aunt Sissy, Lance and Crosby getting the presents ready.

Crosby was just hanging out, waiting for his next meal!

Marlee and Nanny are opening their presents.

I didn't get any pics of my Granny, Uncle Randy and Cousin Connor. But they were there too. So glad they were a part of Crosby's first Christmas. 

The rest of the week was spent eating, cuddling, playing, and resting. 

We caught up on naps.

We got to meet our friend Gray! How cute is she? It was fun to watch the babies stare at each other. Gray is 8 weeks older than Crosby. It was good to catch up with Jacob and Heidi too.

So cute!

Gray wanted to touch Crosby! Gimmee!

Aunt Natalie came to spend an evening with us while Lance played poker. We didn't get a picture of her though. But she brought Crozzie his very own Chuck Taylor's! Thanks, Nat. We love you!

New Years Eve was pretty low key. I think we were asleep by 9:30.

Happy New Year!!!

NYE Dinner with the Aclins. Our running buddies. They are pregnant with Crosby's bff due in June!

Wishing everyone a wonderful 2014!!!

Love, 

Carmen