"I have CF, no biggie"

We recently moved to a new neighborhood. Ayla is so excited to meet new friends. Yesterday she and Larry were outside and so were our neighbors. They have two girls. They played and Ayla was so excited. She came inside and told me: "I told her mom what I have, but she didn't know what I was talking about."

Me: "what you have?"

Ayla: "you know cystic fibrosis?"

Me: "oh, yea? What did she say?"

Ayla: "she just said what's that? And I said oh you know I do my jacket and take enzymes and stuff"

Me: "yea we will have to tell her about it sometime, huh?"

I wanted to cry for a second and I'm not sure why. I don't know if i could have been more proud of my kid than that very moment. 

To me Cystic Fibrosis runs my life at times and feels like it's all consuming. But to her she's like: "oh yea you know it's this thing I deal with but I'm still awesome"

I'll gladly take the heat for you babe, as long as you'll let me! 

Want to learn more about CF? Visit www.cff.org and see how awesome she is!

A rock and a hard place....

I have felt something was "off" with Ayla for quite sometime now. As we're driving home today thoughts are flooding my mind:

-Can we make it through another 2 week admit?

-I can't not be there for Autumn and Amelia.

-This is the third time in 11 months

-she's only 7, what does 8,9,10.....look like?

-we will adjust

-she still hasn't mentally recovered from the last year

-will she become depressed?

-will I become depressed?

-is there something more I should be doing?

-colonized??

We put Ayla's health at the forefront of our minds, every decision is filtered through CF.  We are compliant, we do what we're told...and still CF is winning. 

If we are admitted how hard that will be? If we are not admitted does that mean we accept this cough and this decline in overall health as our "baseline?" NO!

I pray every night for all my family, my children especially. This is so much harder than I expected, although I never expected any of this. 

Today while we were in the pre-op area a little boy was there, couldn't have been but 3 or 4. He was a few beds down, with his sweet little face he gave us a big smile on the way up. He had lost his hair and it was clear his fight was cancer. Things like this are so senseless to me. Although I can't see what's going on in his life, who his persevering smile is affecting. His parents filed in with a big "hope binder" carefully reading his chart and doing everything they can to just get him better. He had an iv placed and his cries were haunting, Ayla was affected. She knew his pain and covered her ears. Next to him lay an inmate with shackles on his feet and his only visitors were correction officers. We were all there together, the innocent and the guilty. It didn't matter who was who, disease doesn't care. I couldn't help but say like I have so many times. "Is this really happening?" 

We then talked to Ayla about how lucky we are to have this medical care when we need it. It's so hard at times to see the positives and have to point then out and sell it to your little ones.

Ayla wasn't feeling well on the way home, I could see behind those eyes. She was afraid. She was upset "to be there again" and I am too. 

Your grateful but also scared, a definite rock and a hard place....