CF, a Starfish, and Great Strides

We are continuing our efforts to support Cystic Fibrosis Awareness Month!

You see this little boy right here?

This wonderful, happy, beautiful, little dude? He loves being outside, fruit, suckers, Mickey Mouse, and Minions. He has an impish grin and sweet spirit that melt just about everyone he meets. He is headstrong but has a heart of gold and all the charm you could imagine. He is naughty sometimes, but in my eyes, perfect and loved and he's more than I imagined when I was told I was going to be the momma of a boy. I do not have the words to express the joy he has put in my life.

But this boy, this one right here,

he has Cystic Fibrosis. CF is this evil genetic disease that attacks his lungs and digestive systems. 

Crosby was diagnosed with CF at 15 days old. Lance and I had hardly even ever heard of the disease, but technically, we gave it to him, genetically speaking and all. During those first couple of months, I was in this deep, dark sea of emotion. While navigating the challenges of being a first time mom and having a newborn, I was also trying to tackle and endure those endless chest therapy sessions, meds, nutrition, clinic appointments - all while absorbing a new diagnosis and it was a lot. 

We are three and half years in now, but there is still a deep lingering pain that settled into my mind, body and soul that fateful day. A pain that I would not wish upon anyone, ever. That pain exists because CF is ugly, gross, complicated, unfair and above all else, life shortening. There is no cure... (yet).

But you know what else has settled in me? An even deeper, unstoppable, indescribable mama bear force that cannot and will not allow me to give up. And that force is stronger than all that other stuff. I will not give up for Crosby. I will never stop fighting for him. And, I will not waiver in my support of the Cystic Fibrosis Foundation, which gives us the hope of more tomorrows!

As parents of a child with a devastating disease like Cystic Fibrosis, we feel a responsibility and drive 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 necessarily 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 3 year old. What most people 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. You don't see the 20+ pills a day he takes in order to by able to absorb nutrients from the food he eats.

People 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.

Please help us by donating to the Cystic Fibrosis Foundation in their research for longer, healthier lives for CF patients. No amount is too small! Seriously, it's not.

Remember the starfish story? The one about the old man who asked the young man why he was throwing the starfish that were stranded on the shore after a storm back into the ocean. And the boy said that if he didn't, they would die when the sun got too hot because they couldn't do it by themselves. And then the older man laughed and said that there must be thousands of starfish on the beach and told the young man he wouldn't be able to throw enough back to matter. Then, the young man picked up another starfish, threw it into the ocean and said: "it mattered to that one".

Every. Dollar. Counts. It matters to me. It matters to Crosby. And it matters to all of the CF patients and families that directly benefit from those dollars that go to research.

The Great Strides Walk in Little Rock this year is Saturday, May 20th at 8:00am.

Please consider donating to the Cystic Fibrosis Foundation and join our fight for A BRIGHT FUTURE WITH CF! 

http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=58281&pg=team&fr_id=5918

With all my love,

Carmen

On talking to Crosby about CF

Lance and I have been talking to Crosby about CF. Nothing too heavy, just explaining why he takes enzymes, does the vest or stays away from germy kids. We have two books about CF, one from our CF care center about a little girl named Patti who has CF ("Who I Am!") and another by CFer Jerry Cahill, "You Cannot Fail" (available here through the Boomer Esiason Foundation).

On his own, Crosby refers to CF as "sixty-five-rosis". He has been able to say the word "emzymes" (for "enzymes") since he was 18 months old. It is interesting now to witness how, as his cognition has matured, he relates back to the things we've been talking about all along and what those books that he's read over and over say. He is learning little by little what CF is and that not everyone has it.

Last Friday afternoon, it was gorgeous out and I took Crosby to the playground of his choice (the one with the pirate ship!). Crosby was playing and having a great time. After a bit, he took a break and sat by me on the bench to drink some water. He crawled in my lap and put his head on my shoulder. I could tell he was watching the other kids. Then, he looked up at me:

Crosby: Mommy, how old are you?

(I knew where this was coming from. I had overheard a little boy earlier ask Crosby how old he was. Crosby said "I'm 3" and the little boy answered "well, I'm 5, so I'm older than you.")

Me: Well, I'm 36 (...no use lying to your own child about your age, right?)

Crosby: How old is Daddy?

Me: Daddy is 35.

Crosby: I'm 3. And I have sixty-five-rosis. (long pause) Mommy, do you have sixty-five-rosis?

Me: No, I don't. But you're right. You do have cystic fibrosis.

Crosby: Does Daddy have sixty-five-rosis?

Me: No, Daddy doesn't have cystic fibrosis.

Crosby: (looking around at all the kids on the playground and says very matter-of-factly) All the kids have sixty-five-rosis.

Me: (long pause, swallow lump in my throat) No baby, they don't. Most kids don't have cystic fibrosis. But you do.

Crosby: I have sixty-five-rosis and I take enzymes. (Jumps off my lap). I wanna go climb the clubhouse. 

Me: (puts on my sunglasses so no one else can see that I'm crying).

One of the things that I worry about is how much and when to tell Crosby information about CF and how to foster the fortitude he will need to face his disease head on. Sometimes I look at my sweet innocent boy and imagine all that he will have to face because of cystic fibrosis and it's just almost too much to bear. He is so young and yet there is a hideous monster lurking in the shadows waiting to rob him of so much. That monster is the truth and the truth is he has a genetic disease that is life-shortening.

As I was reminded this morning by another CF Mom, that truth is changing. The Cystic Fibrosis Foundation is the BEST story in medicine today. Seriously, if you have not read about the amazing advances the Foundation's investment in research has done and is currently doing for cystic fibrosis patients, you need to check it out by clicking here. The Foundation has vowed to continue their momentum in pursuit of a cure until all people with CF have the transformative therapies they need.

Please support the CF Foundation. You can join our Great Strides team or make a donation by clicking on our fundraising page: http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=58281&pg=team&fr_id=5918

-Carmen

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

Birthday Paw-ty

We threw Crosby a Paw Patrol Party the weekend of his birthday. A little background story: Crosby loves trains, so we had originally planned for him to have a train party. Lance and I took him to Party City to pick up some items and when he saw a Marshall balloon (character from the show), he went nuts. 

He was hollering "Arsell" "Arsell" "Arsell" at the top of his lungs. He watches Paw Patrol when he does his vest treatments. It's the cutest little show with a cop dog, a firefighter dog, a construction dog and others going on rescue missions with their boy-leader. (Kinda sounds like the Village People, but it's not). 

Anyway, after his adamant reaction to all things Paw Patrol in the store, we knew we had to change our theme! 

A Paw-ty was what he wanted, so a Paw-ty is what he got.

Happy 2nd Birthday, Crozzie Bear! Here's to God, here's to us, here's to you, here's to TWO!!!!

  

Crosby birthday present was an outdoor playset that Daddy and Pops built! Look how it turned out:

Love,

Carmen