CFRI

When I decided that Brent and I wanted to become parents I guess I didn't fully comprehend what exactly I was getting into! I thought the days were going to be full of fun, cuddles, playing and laughter. I thought there wouldn't be a worry in the world but what my child would eat for lunch, or what park we were going to go play at next.....little did I know my worries were going to be a little bit deeper than that.

Brent and I went to the CFRI National Cystic Fibrosis Conference this weekend. WOW...what an "eye-opener!" Knowing my child has Cystic Fibrosis seems a bit normal on days when he is healthy. We get to do all those fun things that "healthy" kids get to do. I don't think about doing his treatment in the morning as "saving his life," I think of it as clearing this thick nasty mucus in his lungs. Hearing the doctors speak about this horrible disease really hit me, to say the least. To hear that 80% of people with CF have a chronic lung infection called Pseudomonas that cannot and will never be eradicated regardless of how long you are admitted into the hospital. To hear that with each lung exacerbation, or lung infection your son has he looses 3%-6% of lung function. I guess sometimes to hear the truth isn't easy..but in fact it's life. It's my life!

It was awesome to be in a room full of hundreds of people that all are associated with CF in one way or another. To say the word CF and people can fully understand what your day to day trials really are is just indescribable. They know what you go through from the moment you wake up until the moment you go to bed. They know that black cloud that is constantly hoovering over your head. We exchanged advice, we talked about tips and tricks we use, and the saddest part was we talked about our children's health. Some kids being fairly healthy, and others well not so healthy at such a young age. It's just not fair, these innocent young precious lives are fighting for there life, fighting for each breath...battling a disease that will not and cannot be defeated; just prolonged.

I often go bed wanting to wake up from a bad dream. Unfortunately, it's not we wake up the next morning "fighting for Colby's life" as we do yet another breathing treatment. Will there ever be a cure? My answer to you...No. There will never be a "simple fix" or a pill that will solve this imbalance in the body. Thankfully we have doctors working around the clock finding new therapies and medications to help prolong and to help fight this disease that never seems to loose. We were lucky enough to hear of all the newest and greatest in the "pipe-line" and what we have in store for us over the next decade.

It was a great experience for us, we can't wait to go again next year.