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

Crosby @ 15 Months

Dear Crozzie Bear,

Today, you are 15 months old. While I am not doing the monthly updates that I was doing your first year, you are still changing and growing so fast, that I wanted to write one for your 15th month.

You started walking a week after you first birthday and I swear, from that moment on you shed your babyness and suddenly became a little boy!

You are still such a good eater and we work so hard on your nutrition to keep you as healthy as possible. Your current favorite foods are peas and beans, grapes, sunbutter or almondbutter on toast (Ezekial bread) and smoothies! Any time you hear the blender or see me with a smoothie, you want to be lifted up to watch it swirl and you have to have your own! I bought little cups with straws for you and you're so proud to walk around slurping down your smoothie. 

You are not the greatest sleeper. Lately, you want to get up (and get Momma and Daddy up) at 4:30 a.m. That's really taking "the early bird gets the worm" to an extreme, Buddy. Let's work on 5:30, k? We are trying to transition to one nap a day because you are so resistant to the second nap. However, because of your insistence on being an early riser, you probably need that second nap! Your tantrums from being over-tired can wear us all (including you) out. I'm hoping we work out the kinks soon!

Here are some of my favorite things that you do:

• You love Elmo. Anytime you see him (whether it's on your toothpaste tube, the iPad or in your books) you yell "MELMO" over and over, as loud as possible. So enthusiastic!

• You shake your head "no" and say "no" in a nonchalant voice when we ask you a question or you don't want something we're offering or you don't want to do something. It's cute because it isn't defiant, just very matter-of-fact. 

• When I ask you, "where is Momma's baby?" You pat your tummy and shout "bebe!" You also do the same thing when you see a picture of yourself or another baby. You did it in the grocery store the other day when we were in the diaper aisle and you saw the pictures of the babies on the boxes.

• Nanny keeps a picture of you, me and Daddy on her entryway table. Everyday that you are at her house, you have to hold the frame and sit down, then while looking at it, you say "Mom-maaaaa" "Mom-maaaa" "Mom-maaaa" and hug it to you. Sometimes you'll also add a "bebe" or "Da-ye" (which is "daddy"). Totally melts my heart! I miss you during the day too, Crozzie Bear.

• You are still addicted to pacis and usually have one in your mouth. If you see another one lying around, you have to have it and hold it too. You and Daddy have a silly game where he takes your paci and holds it backwards in his mouth. You think it's so funny when he makes the click noise and you get to grab it from him.

• You are obsessed with the heater/fan in the bathroom. When we turn it on, you want to be lifted up to get a closer look. Then you point and say "fa fa fa FWIN,FWIN FWIN!" You really think it's one of the greatest things ever.

• You help your Daddy make coffee every morning. You love to count out the scoops of coffee, 3 scoops per pod, and you say "fwee" "fwee" for three! 

• You take your bopper (little clapper device we use to do your chest percussion) and you bop yourself. You say "bop" "bop" "bop" and imitate the exact pounding of your chest that we do for your CPT.

• You are mesmerized by the lights on the Christmas tree at our house and at Nanny's. Whenever you walk in the room or we turn the lights on, you sayy, "oooooh, pitty" and your "oooooh" goes up in excitement.

• You love cell phones and remotes but can't be trusted with either.

• You are obsessed with our sonicare toothbrushes but don't like it when we brush your teeth.

And, my absolute favorite thing that you do is when I ask you to "give me suggies" (sugar), you lean in for a kiss! You are so affectionate and love hugs and to be held. These are the things of motherhood I dreamed about. You are my dream come true.

I want to remember just how you are right now with you big boy independence, the padding of your little feet as you run down the hall and your little bubble belly.

I love you.

Love,

Momma and Daddy

12/11

Today is my Dad's birthday. Which means... we can all decorate for Christmas tomorrow! Dad always thought you should wait until after his birthday to put up your Christmas tree. This is something that his mother did when he was growing up and he was always super irritated that mom, Cindy and me wanted to enjoy the decorations for longer, starting at the beginning of the month. He always very begrudgingly brought the tree down from the attic after Thanksgiving, grumbling that no one should decorate until after-Sandy's birthday.

Honestly, I still pretty much feel the same way as I did when I wrote this post, last year. But I won't write the same thing again {I'll just link to it.} 

Happy Birthday, Daddy. Love, Your Princess.

Dad, 1981. With 5 month old me. He was "baby-wearing" before it was popular!

Dad's picture is on my refrigerator and on my mom's at her house. I sometimes kiss the picture or tell my Dad I love him while looking at it. I always show the picture to Crosby and point Pappy out. Guess he's been paying attention!

{The video is blurry, but turn up the volume. And if you're reading this on email, check out the blog website to watch} 

I know that Pappy would've loved Crosby. And he really would've loved him saying his name! 

Love,

Carmen

Perfect Fall Weekend

A couple of weekends before Thanksgiving, we headed up to my uncle's place on the White River to enjoy a lazy fall weekend.

It was a perfect weekend. It was cold and crisp outside, very fallish. We arrived late Friday afternoon and Crosby slept from the time we left until Marshall. He was a really good traveler this trip. We slept good, ate good, enjoyed coffee and hot chocolate and kept the fire going the entire weekend.

I was really worried about how Crosby would sleep. When we went on a trip for Labor Day, he did not sleep good in a strange place at all. Waking every hour and then up by 4:30 am did not make for a happy family. Miraculously, at Gill's this particular weekend, he slept all night and was up at his usual 5:30 am!! We shan't complain about that.

The best part for us, was just not having an agenda and time to relax. It can sometimes be hard to relax at home on the weekends. Sometimes it feels like you have to fit in everything you can't get done during the week. I'm often torn between all that I should be doing, and just holding and playing with Crosby. Here, I was able to sit, still my mind and just enjoy Crosby and Lance. I tell ya, it was bliss!

It was also nice for the HOGS to get their first SEC win. WPS!

Thank goodness for the travel high chair!

Lance geared up to fish. It was really cold! Crosby and I watched him from the windows that morning. You can see a little bit of the fall colors that were left on the trees. It was really beautiful out!

That afternoon, Handsome and I also piled on warm gear to go outside with Daddy.

Crosby had so many clothes on, it was hard for him to walk! 

But how cute is my little bear?

He was as fascinated with the rocks this time as he was the last time!

I love this little face!

Thanks for having us, Uncle Gill.

I am grateful for a relaxing weekend and time with my little family.

Love,

Carmen

Drugs and Money: Kalydeco

Kalydeco. It's not a cure, but it's a treatment that is a daily cure.

On January 31, 2012, a year and a half before Crosby was born, the FDA approved a drug for CF patients (ages 6 years and older) who have the specific G551D mutation in the Cystic Fibrosis Transmembrane Regulator (CFTR) gene.

About 4 percent of those with CF, or roughly 1,200 people, are believed to have the G551D mutation. Crosby is not in that 4%. {As I have stated on here before, Lance and I have decided not to disclose what Crosby's mutation's are for privacy reasons. We believe that Crosby's genes are personal to him and any information regarding those specific genes needs to be kept private, unless he decides to share later on in life.}

The CF Foundation partnered with a small drug company and contributed more that $100 million for the research and creation of Kalydeco.

For you chemistry nerds out there, here is the chemical structure of Kalydeco (Ivacaftor)

Kalydeco is a pill that is taken two times a day with fat-containing food. It helps the protein made by the CFTR gene function better and as a result, improves lung function and other aspects of CF such as increasing weight gain.

Kalydeco is the first available treatment that targets the defective CFTR protein, which is the underlying cause of cystic fibrosis. Kalydeco was a breakthrough for CF patients because other treatments only combat the symptoms. Kalydeco is so effective, that CF patients on the pill are able to pass sweat tests (test that confirms CF) and their lung function can go up to 100% without any other daily treatments such as the vest or nebulizer being necessary. It's not considered a cure, since the pill must be taken every day, but it is a daily cure.

Taking Kalydeco results in significant and sustained improvement in lung function. I've read other stories and reports where adult CF patients, who have suffered their entire lives, after a week of being on Kalydeco suddenly exclaim, "so this is what it feels like to really breathe!!"

Kalydeco is effective only in patients with CF who have the G551D mutation, so 96% of the CF population is still waiting for their daily cure. And Crosby is still waiting for his.

There was a really interesting article in the New York Times today about the expansion of CF research. I encourage everyone to read it here: http://www.nytimes.com/2014/11/19/business/for-cystic-fibrosis-foundation-venture-yields-windfall-in-hope-and-cash.html

The CF Foundation presser explaining the receipt of $3.3 billion (BILLION!!) can be read here: http://www.cff.org/aboutCFFoundation/NewsEvents/11-19-Expansion-of-Research-and-Programs.cfm

Do you pray? I do and have for as long as I can remember. I'm sure most of you who do pray can remember a time that you prayed to God and said, "If you just give me this one thing, I will never ask for anything ever again.”  Maybe you were 8 and were wanting a new bike. Maybe you were 19 and wanted that boy or girl to ask you out. Maybe you prayed for a job or for a specific outcome on a test, or approval on a home loan.

I've prayed that prayer before for 100 superficial, inconsequential things. But have you ever prayed that prayer for something so important to you that you really would give up everything else?

My prayer is always the same. I would give anything up, never ask for anything again, please just let my baby breathe and live and grow.  Please just ease his suffering and allow him to have the life he deserves. Please don’t make me attend my child’s funeral. Please let there be a cure for cystic fibrosis. 

Thanksgiving is approaching. If I am thankful for one thing this year, it's the Cystic Fibrosis Foundation. Because of the CFF, one day my prayer for Crosby just may be answered and his Kalydeco may be just around the corner!

Momma Bear and her Man Cub.

Love,

Carmen

Veteran's Day

I often think about our veterans and what they do. 
I think about the sacrifices our military makes.
I think about that kind of courage.
To all the veterans on this Veteran's Day: thank you for freedom you provide me and those I love.

I love watching military reunion videos. The families, the kids, the babies, the dogs!
Nothing will brighten your day like those videos.

I tear up every time I watch one.
Because that's when I think about their families.
The ones left behind.
The ones waiting daily in anxious anticipation for the return of their own personal hero.

My dad was a veteran, but I never had to endure long term separation for active duty because he was out of the Army before I was born.

So on this Veteran's Day, I send an extra heartfelt thank you to military families.
Thank you for enduring what I don’t think I could.
Thank you for being strong.
For us.

These videos get me every time.
Grab a tissue. Or a box.

{Tech note, if you're ready this on email or feeder, you'll have to actually go to my blog website to view the videos.}

The dog ones are especially sweet too:

Love,

Carmen

Halloween, 2014

This Halloween was not Crosby's first, but we really didn't celebrate the holiday last year, so it was unofficially his first!

We had fun going over to our friends' house, Jeff and Carey. I felt a tradition in the making!

The pics speak for themselves...

In case you haven't figured it out by now, we were Forest Gump, Jenny and Lieutenant Dan.

At the party, we did roll Lieutenant Dan's pants up so that he could walk around!

For Lieutenant Dan's hair, I cut up a wig and glued the strips on the inside of the bandanna. Crosby didn't mind the "hair" at all. I think he is so use to my hair being in his face that it just didn't bother him. He didn't tug at it or try to take it off all night! 

Homer, Marge and Maggie (they have enough kids to have had a Bart and Lisa, but the older two didn't want to participate in the family theme!)

Elsa and Ana were fighting over who got to hold Maggie.

Fred and Wilma

We went on a really fun hay ride through Jeff and Carey's neighborhood so that the kids could Trick-or-Treat. Crosby loved being out and watching all the action.

My little bumblebee has had this costume since her first Halloween, 7 years ago! She just wanted it documented that despite her larger belly, it still fits!!

And sometimes, even military officer's need their paci!!

We had a great Halloween. Until next year....

Love,

Carmen