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Sunday, May 20, 2012

2 Years of Waiting

Hello World!

Today is 2 years. 2 years of waiting for my transplant. It has been a long 2 years.

When I examine my life now and compare it to this time last year or even 2 years ago it is amazing how much worse I am health wise. This is NOT how I pictured my life at 26.

I'm 26, I should be a few years into a career, in some kind of relationship or at least attempting relationships, living on my own, having my own life. I'm not close to any of those things.

I haven't been able to work since 2008. I haven't even had a quality relationship in years. I still live with and rely 100% on my parents. This is not how things were suppose to be.

I hate to bitch and moan because things could be worse. And I know that. But when they say life's not fair I didn't think it would be this unfair at 26. Its not just being unfair to me but to my parents as well.

I hate cystic fibrosis and I fight it every day. And its hard. But my parents hate it just as much and fight it every day too. Its just as hard for them but in a different way. I always hate when I slip up and say "You don't know what its like to have CF, this isn't easy." Because I also don't know what its like to watch my kid fight this disease and ultimately not be able to do anything for them. They can provide me support emotionally and financially, and they do. They can be there to help me with therapies and medications, and they do. But in the end they can't make CF go away. They can't make CF cut me a break on days I feel like the weight of the world is on my chest. I can't imagine what that's like.

I want and need this transplant not only for myself but for them. They deserve it just as much as I do.

So while this isn't how my parents or I pictured my life at 26 we are taking the good with the bad and forging ahead. There is nothing else we can do. Certainly not going to stop now that we've come this far.

Hopefully in a year, I can look back on this post and say "Wow, You've come along way Jess"

So while the light at the end of the tunnel seems dimmer than ever, I can at least still see the light.

"Win" - Brian McKnight

Breathe Easy

1 comment:

  1. I really appreciate the empathy (or not quite - because like you say we can't know what it's like to have a child with the condition we have) you have for your parents. (I don't have CF but I have something called cystinosis and am a kidney transplant recipient.) I often find myself wanting to say (particularly to my husband), "You don't know what this is like." But I don't know what it's like for him, either. Thank you for the reminder. And I hope and pray that by this time next year you have your transplant and a new life.