Tuesday, July 15, 2008

What's life like, right now?

In an attempt to be real about life right now...I want to share some deeper thoughts of what life has been like for me in the last month. As i'm preparing to give a big speech on Saturday, at Pipeline to a Cure, getting ready for this has brought up a lot of emotion that I haven't really dealt with in a long time (if ever)...allow me to explain.

It's been a journey for me, as an adult with CF. I've had my difficult times in the hospital, been sick a lot, missed out on some 'normal' things that peers my age get to do, and feel like i'm constantly adjusting to a new state of normal...My body is always changing, and my body is so connected to me emotionally and mentally. One thing about how I deal with a life with CF, however, is that I don't choose very often to focus on the devastating parts of having Cystic Fibrosis...I believe that the hope I have is what has gotten me through those tough times- so honestly, I choose not to always think about death, life expectancy and whats ahead. Sometimes it's a matter of survival, to be honest.

In starting this blog, one of my goals was that I wanted to be real- no putting on a mask to hide what's going on, and this is one of those moments. Many people i've known with CF, haven't made it...and I honestly don't know what lies ahead for me, I don't always understand why this is happening. So talking about these things may be a little hard for me on Saturday, (thus, I welcome any prayers).

However, in working on my speech, i've had to really think about what I'd like to say and be honest about the realities of CF...and those realities are not pretty. Not to mention, this has been a very vulnerable ride as my life and story will be told among 600 strangers in the room, and has been on the news across California...So, I have been really learning to take it in and trust that God is really working and to be honest, as hard as it is to be vulnerable- there is a feeling of freedom, knowing that this is my life and I am not hiding.

With all that said, this process of preparing a speech and getting ready for a big event has definitely brought me to reality, and has forced me to look inside me and see how I am really doing. I am in a vulnerable place, yet I feel so free- knowing that I can be myself and share my story is a huge blessing in my life. I don't have all the answers, and though I struggle with the idea that I have to be perfect and know all the right things to say, I am learning to trust that God has it all under control anyway. I still don't always understand why I have CF, and I don't always live at peace and I'm not always happy. However, I am learning to rest in the trust of my God who loves me and cares for me, no matter what state I am in or how I am dealing with things...

Thanks for reading, I'm not even sure if this made any sense. Receive it as you will...I just wanted to share that little piece of 'life right now' :).


Traci said...

Hey, Em. Thanks for sharing! I will be praying on Saturday.

Nikki said...

Hi there Emily,
I've been reading your blog for a few weeks now, since you commented on confessions of a CF husband and I just wanted to say that I am praying for you and appreciate so much how you are using CF to glorify Jesus. It gives me SUCH hope. My daughter is 3 years old and has CF and she loves watching the video of your story on the pipeline to a cure site, cause you have a vest and a "nebby". I am very thankful for you even though I don't know you. And I will be praying for you this weekend!
You want to teach my daughter how to surf? ;)
My husband and I both had countless opportunities to learn to surf growing up(in so CAL) and neither of us did. Which is really lame. I love the beach though and so does our daughter so we're hoping that daily surfer father in law will be teaching our daughter when she's a little more comfortable in the water.