Saturday, August 24, 2013


After hearing a lot of things this week, I realize I need to answer some questions and clear some things up. Nobody knows exactly what to say when they talk to me. I get that. But here's the thing...

1. "Your faith is amazing." False. I just love Jesus.
2. "You're the strongest woman I know." False. I'm probably the weakest woman you know; I just know a strong God.
3. "God knows what He's doing." You're right. But that doesn't make it easier.
4. "Miracles happen everyday." True. But that doesn't mean healing Alexis' little body is the miracle we'll get.
5. "I'm here for you." Thank you. That's all I need.

I'd love to tell you this is going to be easy. After our 3 hour, 6 person Dr. visit in Dallas, "easy" is not the word I would use to describe this disease. CF affects the lungs, the pancreas and the intestines. The short version is that mucus builds up where it shouldn't and, without proper care, could build up so much that said organs can't function. It's all a "wait and see" game for the first year. So far, Alexis' lungs sound good so we are focusing on the pancreas. She will start taking enzymes before every feeding in an effort to help her absorb much needed fats and vitamins. Those along with a multivitamin and salt regimen (1/8 tsp of table salt in her bottle everyday) should keep things running the way they were intended. 

I wish I could tell you that I've got this, but I'm overwhelmed in every way imaginable. I'm overwhelmed with information and trying to figure out how to be mom while remembering to be wife and friend and everything else I need to be.

I'm overwhelmed with gratitude for friends that decided to start a donation page for our family. Since then, I'm happy to tell you that we've qualified for state funded insurance, so that prayer has been answered in a big way. The trips to Dallas and the "keeping our heads above water" right now are still there, so thank you to those who have donated already. Knowing we won't be going through the financial burden of this alone is huge.

Lots of you have asked me how we're doing.

The truth?

We are in survival mode. We are literally taking life one day at a time, never knowing what the next will bring. One day we'll get to the "living" stage and survival mode will be a thing of the past. We'll be used to this newest normal and we'll be able to smile more than we cry. But right now? We survive.

I do feel blessed. I know God doesn't give babies like ours to just anybody, so I feel blessed that He saw fit to give me two. That doesn't mean that I'm not dealing with the emotions that go along with a CF diagnosis and that doesn't mean that I'm going to feel awesome everyday. But if there's one thing I've learned over the last few years, it's that God's cool with emotions and the "I'm not okay" days. In fact, He specializes in them because those are the days I need Him most.

So, thank you for loving us. Thank you for praying for us. Thank you for sharing our story.

Thank you for surviving with us.

1 comment:

  1. words are insufficient, cannot express the power and beauty of this post written in what must have been heart wrenching authenticity - thank you for pouring out truth even in the midst of pain