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

Kalydeco is here.....

So, we all heard the news yesterday.....

The CF community is celebrating together, as one. We are one step closer to making each of our dreams for a cure, a reality.

I cried. I cried hard. I cried for those who we have already lost, for those who this break through comes too late. I cried for myself, for Natalie, because its not yet our time. I cried for the tiny G155ders who will know a long, healthy life, for the older G155ders who will have their lives changed....and for their mothers, who can breathe a tiny sigh of relief, even if it is just a tiny one.

Sitting in the car line waiting to pick up one of the kids, with Natalie in the back seat, scrolling through my Facebook on my iPhone because of the endless wait, I was bombarded by links about the news. I called Natalie's dad, he couldn't even understand what I was saying. I was a blubbering mess. Natalie was oblivious....her mind occupied with her Lalaloopsy dolls.....but I just kept looking back at tiny, so frail, so pale, with her dark circles under her eyes......All I could think was, "One step closer, baby......We're one step closer."

So close that sometimes I think I could reach out and touch it.....but so very far.....

Natalie's cough is a reminder.

We aren't done.

We have so much more to do.

But today is more than just one drug for 4% of the CF population.....its confirmation that our work, our fundraising, our passion and our tears are not in's working....we are close......we just have to keep going.