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.

Thursday, December 31, 2015

Beauty From Ashes

Moving to the Big City a year ago was so much harder than I anticipated. Everything was difficult: finding a place to live, the move itself, finding a church, Micah's job - just everything. I had high expectations for this place. Too high. It's not the first time my expectations got the better of me. When Micah came home from Afghanistan for good, I remember breathing a sigh of relief thinking that the hard part of our life was over. God had different plans.

The last few months have proven to me just how little control I have over my life. You'd think I would have that figured out by now. But these few months have also been a sweet reminder of how deeply Jesus cares for me and my family. He has shown Himself in incredible ways.
Let me explain...

Ben got really sick with a urinary tract infection. We didn't know that's what it was until we ended up in the ER with a fever of 105 one night. Jesus looked like a borrowed car, sweet friends who rushed over to stay with Alexis, and a blonde haired doctor who - at the last minute - decided to run a test for a UTI just to "rule it out." Because of Ben's previous bladder issues, we were referred to a urologist after our ER visit. Because Ben had been so sick, the doctor decided to run some further tests on his bladder and kidneys as a precaution. The test results were concerning. At the very least, we were told Ben would need another surgery (he had one when he was a baby) to correct some reflux of urine into his right kidney. What was more concerning was the abnormal shape of his bladder. As the doctor explained that could mean Ben actually had some kind of neurological issue, my heart began to race. We decided to do another test right before Thanksgiving to try and determine the severity of the reflux and the cause of the abnormal bladder shape. I fully expected to walk out with a surgery date. Instead, we were all a bit shocked to discover that there was no reflux showing with this test and that his bladder didn't need any immediate attention. Whaaaat!

A few days before that second test, I attended a mom's group at our church. Feeling especially vulnerable and incredibly overwhelmed, I tearfully shared what was going on and listed all the other things that were beginning to pile up for the coming week, including other doctors appointments for the rest of us. For that entire week, Jesus looked like homecooked meals, babysitters, extra ears and hands and an incredible amount of encouragement - some from people I never even knew before then. I am still blown away by it.

In the midst of all that was the overwhelming umbrella that made everything else seem crazy... we were moving. Micah had been talking to a company in the northeast and, frankly, I thought that's where I'd be typing this right now. But God had other plans. Our plans were derailed (in a good way) when Micah was offered a job here. The kicker, though, was that we still needed to move out of our apartment. Finding a place here that we could afford and that was in an area we were comfortable with was not going to be an easy task given what had become a very short timeline. That's when Jesus looked like an angel of a realtor and a miracle house.

I started to describe the events that have taken place lately to a friend just the other day and I just chuckled because of how sweet it has been. How Jesus has made these ashes of the last few years into something so beautiful. Some of this may seem trivial to you. You may be thinking that all of this is just normal. I'm so delighted that this is normal life for you, but it has certainly not been for me.

As I sit here and reflect on what's taken place, it's natural for me to go back to all that we've endured - all the hard, the mess, the ugly - those ashes.

And then I'm thankful.

For without the ashes, I would have missed the beauty.

Monday, October 19, 2015

Live it Anyway

I remember the first time it happened. We had just moved to Mayberry and she was in her new room. I scooped her up out of her crib, changed her diaper and carried her out to the living room. I realized that it had been the first time I had walked into her room in the morning...unafraid.

Until then, going into her room and scooping her up in the morning made my heart pound out of my chest. There was so much I felt like I didn't understand about cystic fibrosis and so my mind would wander. I was so afraid of what I would find every morning - or not find.

One of Alexis' early appointments at the CF clinic went something like this: "...and if there's ever an emergency situation like, say, she stops breathing... call 911, tell them she has CF and they'll call us." There was more information that day, but I couldn't stop the tears as the respiratory therapist held my hands and explained that, though rare for most kids, that situation was more of a possibility than she'd like to admit. And as if I wasn't afraid already of what I'd find every morning, I'd say that (completely necessary) conversation pushed me over the edge.

Until that one day.

People have opinions about kids like Alexis, Jaxon or even Abigail. Many people's unfortunate opinion is that their lives are not worth living. That keeping them is a selfish thing to do. As a culture and sometimes even as Church, we believe life isn't allowed to be hard. That "God wouldn't allow that." I believe the truth is that He allows the hard, the unexpected, the immense darkness so He can show off. After all, light shines brightest in the darkness. He knows that - He created it. As much as we'd like to assume otherwise, life wasn't meant to be easy. He knows that - He created it. If life were always easy, we wouldn't need Him.

People are critical, hurtful and say all the wrong things... love them anyway.

Emotions are overwhelming and have a mind of their own... feel them anyway.

Life is hard, unpredictable, often terrifying and dark...
live it anyway.

Monday, September 28, 2015

When You Don't Know What To Do

I'm in this incredibly reflective, peaceful season of life right now. Sometimes I'll just sit and rest in complete thankfulness for what Jesus has brought me through as a wife and a Mama. I know my story isn't over, but I also know - so deeply - that Jesus loves me and will continue to carry my tired feet every step of the way.

Because I feel like He has taught me so much in the last few years, I have a hard time expressing it all in a way that isn't repetitive which is probably why the blog has fallen off the wagon a little the last few months. I have this deep desire to share Jesus and to share our story but I get in my own way.

I'm not typically a list person. The whole idea of writing things down and crossing them off makes me sweat. I'm pretty easy going, I'm not a planner, and I'm not terribly organized but nonetheless, I thought this subject could use some specific, life-speaking, grace-giving bullet points.

We've all been there. You've seen somebody's world crumble and you've thought, "I have no idea what to do." When there's a major tragedy or a huge life change within your circle of people, it's hard to know how to react. It's especially difficult when you haven't walked a similar road. I've been on both sides of those tracks, but I've probably spent more time on the life change side. I've seen the ache in people's hearts as they wrestle through finding the right words.

A few tips from the other side...

What to do when you don't know what to do:

1. Nothing. One of the most valuable things you can do for someone who's world just crumbled is to sit in the mess right along side. Be content to just be there. No words. No nothing. Just be. A simple, "I'm bringing coffee and a hug" or "Can I just come sit with you at the hospital?" is plenty.

2. Pray hard and tell them when you do. I can't tell you how many times I got texts and voicemails from people simply saying they were praying for me at that moment. Simple encouragement can make a huge difference.

3. Avoid cliches and statistics. "I'm so sorry" or "That sucks" is so much more meaningful than "God is in control" or "My best friend's neighbor knows a girl with CF who's 28 and doing fine."

4. Make it specific. Everybody wants to help so the most common phrase is usually, "Let me know if you need anything." While that's commendable, it's also useless. A broad statement like that eliminates nearly any hope of that person actually contacting you. A more effective way to help is having your own plan. Offer to watch babies, bring coffee, give a break, bring a meal. It doesn't have to be anything extravagant, but I remember feeling so overwhelmed with life that I physically couldn't pick up the phone to ask for help - let alone remember who said they could. So keep the ball in your court.

5. Know your people. Personalities vary. I personally love people and welcomed visitors with open arms (and usually a tearful face). I'm totally fine with wearing my heart on my sleeve, but some people aren't. Be there but be respectful of boundaries.

6. Check up. It's so easy to feel like the dust has settled in someone's life when the reality is that it's just beginning to brew. Appearances can be deceiving so check up periodically. A quick text, a sweet voicemail. Again, it doesn't have to be anything earth shattering. Just be there. (I can't stress that enough).

Six seems like an strange number to end on, but there you have it. I know ideas like this circulate social media from time to time but everyone needs a reminder.

Oh and my dear list people,
Don't stress about this checklist. If you're guilty of doing all the wrong things in a tough situation (I know I am), know that there is abundant GRACE. Nobody gets it right and that's okay. Just be there. Be present. Be available. Be Jesus in the flesh and just love.