Wednesday, February 1, 2012

A Kalydeco Hangover? Already?

I'm starting to see the hangover from yesterday's gushing of excitement.

96% of the CF community woke up this morning to the fact that nothing was different, nothing has changed. We started the treatments, took or administered medications, made our calorie filled breakfasts and packed our calorie filled lunches and realized that we are still fighting......

As happy as we all are about Kalydeco, we are all secretly wishing that it was our time....that we weren't the ones left behind to wait, the realization that we will continue to watch our children and our friends suffer while others are seeing the dawning of a new era........

There's nothing wrong with feeling left out. There's nothing wrong with wishing that it was our time. We are the majority.

Call me crazy, but I believe our time is coming.....sooner rather than later.

The only thing this does is push me harder to stay on top of CF, to try and stay one step ahead. Because WHEN our time comes, she's going to be as healthy as humanly possible. She's going to have a long healthy life. She's going to out live me. She's going to live out every one of her hopes, her dreams, her wants and her wishes......She has to.....she just has to.

So let's all take some Tylenol, rehydrate ourselves, and get back to it.....There's work to be done.

All of my best. ~j


  1. I didn't want to admit that I had any of those feelings. I'd love to just be happy for the breakthrough. But you're right...I want to be selfish and say "Now us!" I'm not a fan of rushing time, but it's so damn hard to wait. *hugs*

  2. It is sooo very hard to we're going to make it. I have to believe that. *hugs* to you as well, momma! All of my best ~j

  3. Glad to see you're posting again. I feel like there are so many holes in the timeline. I still can't believe you're having a baby, but am glad you are because I've always believed you're a caring and excellent mom. That child will be very lucky, as are the two girls you have.

    Keep up the posts.


  4. UC,

    Thanks for stoppping by. Sorry about the holes. I think that its best left that way though. Perhaps they will be filled over time.

    Its nice to be back.
    All of my best. ~j