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. 

Wednesday, October 26, 2016

When the Other Shoe Doesn't Drop

In my experience, life isn't this easy. While this peaceful season of life we're in has been completely welcomed, it also seems unusual. I wake up most days in this state of thankfulness for where we are now, what we've overcome and how drastically Jesus has changed my heart. When we think of this "freedom in Christ" that is so abundantly present when you know Jesus, it's easy to associate that with freedom from things we can see. I love stories of redemption and breaking the chains of all kinds of addiction. You can see the physical change and it's awesome.

For me? There is freedom from worry and fear.
Freedom from comparison and discontentment.
Freedom from the bondage of religion.

But then I'm human. There are days when those things take over and I forget Who I belong to.
There are days when life seems uncertain and I wait for the other shoe to drop.

Because there's always been another shoe...

There are still nights that I lay in bed listening to Alexis cough, wondering what I'll wake up to the next morning. Nights that the words, "If there's ever a time she stops breathing, call 911 and then call us" ring through my head. I can see the nurses face so clearly in my head; feel her hands holding mine as the tears poured down my cheeks.

There are days I wonder what's going on inside Ben, knowing that this bladder issue may never resolve itself. Days that I examine his whole body looking for something wrong because he can't tell me if it hurts.

Days and nights I wait for the other shoe...

Because there's always been another shoe.

But then Jesus gently floods my soul with peace and joy; this distinct and undeniable understanding that He is for me, with me, never wavering in His love for me.

There very well may be another shoe. I have no idea what's coming.

I love that more often than not... I don't care.

I love that my heart knows where to run when it's heavy.

And I love that I know just Who has the other shoe. I trust Him with it. He knows what He's doing.

Sunday, June 5, 2016

I Don't Pray for Healthy Babies

There are phases in life that sort of restart every so often. When you're in your 20's and 30's, that phase is typically babies. Right now, there is another "round" of babies happening in my circle of friends and family. It's been so fun to watch bellies grow and see newborn pictures float around all the social media venues. Jesus said kids are a blessing and I love being a part of communities that recognize that.

I can't tell you how many times I've heard, "I don't care if it's a boy or a girl. Just as long as they're healthy." I've written about that before, I know. I commend you for saying that, I really do, but I have a confession to make...

I don't pray for your babies to be healthy.

Don't get me wrong - I don't pray for your babies to be sick either. I wouldn't wish some of the dreadful valleys we've been through on my worst enemy. Or maybe I would...

The thing is, those valleys taught me so much about life and about Jesus that I sometimes do wish people could experience those things just so they would find Him.

So while I don't pray for your babies to be healthy, I do pray that you'd find Jesus in the midst - healthy or not.

I'll pray that Galatians 5:22-23 would be abundant. That Jesus would show you true love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

I'll pray that you look at that sweet baby and see them how Jesus does - His gift to you. No matter how it may be wrapped.

I'll pray that He'll give you the strength to put one foot in front of the other every day, never knowing what may be around the corner.

I'll pray that you would pour out His grace on them the same way that He pours His grace on you.

I'll pray that they would teach you even half as much as my babies have taught me.

I'll pray that you would recognize every day is a miracle. Even the hard ones.

And, dear friends, I'll always pray that if you do ever find yourself in a dreadful valley, you would recognize the little miracles, the joy at the bottom.

Because it's there.

You are so loved. 

Thursday, February 4, 2016

The Reward

The conversation went something like this:

Him - "I think we're done [having kids]. What about you?"
Me - "Yeah, we won't be having any more of our own. I'd love to adopt one day, though."
Him - "It's just the older we get, the higher the risks, ya know?"
Me - "Right..."

The "risks." I knew exactly what that man at the park meant when he said that to me. Statistics tell us that the older the woman, the higher the risks for chromosomal issues.

You know... things like Down syndrome and cystic fibrosis.

I just chuckled. It's all I could do. After all, that man didn't know me from Adam's house cat so how could he have known my story? My children?

I heard the fear in his voice. With two perfectly healthy girls, it was terrifying for him to imagine what it would be like if that wasn't his reality. I watched him chase those sweet girls all around the playground and then my eyes ventured to my own kids. Playing, laughing, enjoying being together and my heart leapt with pure joy followed by a gentle ache. 

Because I get it. I get where he's coming from. I get where you're all coming from. You probably say those words often. "Thank God they're healthy." I commend you and I'm grateful you can say that. I would never wish sickness or hardship on anyone. It sucks. I get it. 

But then I think about my babies and how grateful I am for where Jesus has brought me because of them. A part of my heart wishes everyone could experience that reality. That precious transition from anger to laughter, pain to joy, fear to faith, heartache to hope. There's just nothing like the power in God's mighty hand and the way He can turn what seems like a disaster into something that showcases His strength so beautifully. 

That "risk?" That risk is why organizations like Planned Parenthood stay in business. That risk is why so many women fear the unknown and choose to never face it. 

But oh, my dear friend, please know... this sweet reward is far greater than that pesky risk. 

You are loved.