Friday, September 22, 2017

Little Girl, Breathe Deep and Fight Hard

I knew it would happen eventually. I knew she would realize that what she does everyday is different than other kids. I knew I would have to try to explain cystic fibrosis to a toddler one day. And I was right.

"Mama, why do I have to do my vest a lot?"

I could see the wheels turning as she tried to understand. I explained it the best I could for her four year old little mind. My heart ached as I told her that she was born with something we call cystic fibrosis. I told her she could call it CF and that some kids even call it 65 roses. I told her that her vest and her cool masks kept her from getting sick. I told her that's why we have to go see her doctor friends sometimes.

I asked her if she felt better after doing her vest and she nodded. She said her favorite part was getting to watch a show and color.

I know there will be more questions the older she gets and some days I can't help but feel overwhelmed with how I'm going to answer those. See, CF sucks. It sucks to do treatments everyday and take medicine every time you eat. It sucks that your normal includes doctors and hospitals and not being able to play with other kids like you. Even my "half-full" perspective can't always find the good in CF.

Over the last four years, I've learned to push CF as far away as possible to give her the simplest life I can. I'll keep fighting for simple. I'll keep focusing on the present and loving my girl the best I know how.

Today, we'll snuggle and play and maybe even have a Mama/Sissy date. Lord knows I need it after a heart-wrenching explanation like that.

CF may suck, but life doesn't have to.

Tuesday, September 19, 2017

39 Weeks

That's how long it's been since I've written in public. 39 weeks ago, I wrote about our newest surprise. 39 weeks ago, I was pretty pissed off. 39 weeks ago, I felt like I needed to crawl in a hole and hide for a little while. So I did.

I stopped writing, I got off social media for a while, I pulled away from everything and most everybody. I was overwhelmed and clung to the mundane and simple. I had one goal in mind: to take care of my family. So I did.

Both kids celebrated birthdays. It's hard for me to wrap my head around having a six year old and a four year old. I look back at pictures from when they were babies and I hardly recognize that life. It feels like a lifetime ago and yesterday all at the same time. 

This July proved to be one of the best we've ever had as a family. After some initial hiccups, Micah and I got to celebrate ten years of marriage and ten years of friendship with our dearest Greenwald's. Mexico was a welcomed escape from reality. During our week there, Micah surprised the heck out of me. We renewed our vows and celebrated our love for each other right there on the beach. I will never, ever forget it. 

Coming home after a month of goodness and traveling was tough, if we are being frank. Life slapped us both in the face and I'm not sure we have even recovered yet. 

Ben had surgery in August to fix the reflux of urine to his right kidney. We are hoping this repairs everything and eliminates his frequent urinary tract infections, but only time will tell. 

We've had roughly 46 doctor's appointments so far this year and many more scheduled for the next couple of months. I forget what a large part of our lives doctor's offices have become until I am faced with a number like that. Jesus has blessed us with wonderful doctors, nurses, pediatricians, dentists, eye doctors, orthopedists, pulmonologists, geneticists, urologists, social workers and therapists. I can't explain how grateful I am to have professionals that love and care for my kids the way they do. They are family. 

Ben and Alexis also started school this year. 

So far, homeschooling is a big blessing. They enjoy school and I'm loving the freedom and flexibility it has brought to our schedule. We are just taking it one week at a time. 

That's some of what you missed in 39 weeks. 

It feels good to write out loud again and I hope to get back into the swing of doing so more regularly. I feel like I'm in a constant state of arguing with Jesus about sharing our story or not. I know our lives are different, I know my outlook is different and I know I could share more than I do. But then I second guess and delete and convince myself that what I have to say has already been said. Then Jesus nudges and I ignore. On and on it goes. 

But I'm back and I'm not mad about it. Happy Tuesday!

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.