Wednesday, December 14, 2016

Daddy's Girl and the Other Shoe

She may look like me, but she's so her daddy. She hates chocolate and loves adventure. She loves anything that flies and turns the music up loud. She'd give you the shirt off her back (or 'lovey' off her bed) and loves hard when you love her back. She's imaginative and a joy to be around. 

She's just so her daddy...

Alexis goes to the CF clinic every three months. It's been that way since she turned one. They take really good care of her at Children's and I'm always grateful for the "doctor friends" we get to see so often. She also gets a chest x-ray every year. It's just how it goes with CF. They monitor her lungs and will do so more often the older she gets. 

At her last chest x-ray, they noticed something different...

...and it had nothing to do with her lungs. 

Alexis' spine is starting to curve. 


Just like her daddy. 

Because CF wasn't enough for her body, my girl now has two battles to fight. Two battles that now encompass her entire body. Two battles that will be managed but not won. 

And frankly, I'm pissed about it. 

I'm not even sad. I'm angry. 

I hate that this is happening to her. I hate that, of all the babies, it's her. I hate that both of these battles will be life-long. I hate that it will only get worse. 

I hate it. I hate it. I hate it! 

I hesitated even writing this. I don't want any more sympathy. I don't want people to look at me and feel sorry for me and my family. I don't want you to tell me Jesus has a plan. I don't want you to tell me you know somebody with scoliosis. I do, too, and I see the effects of it every. single. day. And don't bother Googling "cystic fibrosis and scoliosis." It doesn't exist. And that's scary. 

I just need you to tell me that this freaking sucks. I need you to hug my neck and let me be angry for a minute. I need you to be Jesus to our family. That doesn't mean spewing Bible verses and asking me what we did wrong to deserve this. That just means you love us. You show up. You pray hard and you walk it with us. Don't make it complicated.

I won't apologize for this post. I won't. If you've been around for any period of time over the last five years, you know that writing is how I process. And this is me processing and trying to see past the anger. I can't see anything other than that right now. 

Believe me, I know we will reach the other side of this. If anybody has learned that lesson, it's me. I know that this is just the next valley to navigate. And this is the first step. 

Let's just call this one chapter 10. 


  1. This sucks! ... and you dont have to apologize for fighting hard for your kids... ever.
    We are praying right along side of you.

  2. All of it sucks! This is the 25th anniversary of my brother's final fight with C.F. Oh how I wish he had survived to today. C.F. has made so many advances since 1993. Regardless of the advances treatment, I know Christ is sufficient, but He still allows me to scream and question His motives. I am so thankful for the most important part of Christ, His GRACE. YOUR BLOG INSPIRES. Please never stop sharing.