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