I wanted to write a thank you letter, but couldn’t  even decide how to word the greeting, let alone find the words to say how overwhelmed our hearts have been at the outpouring of love toward Olivia and our little family. When I close my eyes to picture the faces of those who have meant so much these past couple of months, I see faithful friends and family who have stood with us from the beginning. I see new friends, and I marvel over the depth of sacrificial love found in this amazing community we came to only one short year ago. I see blurry faces that represent people we’ve never even met, yet you prayed and gave anyway. So, I finally settled on “Dear You,” because if you’re reading this, it means that you care. Robert and I–and Olivia too–are so grateful. Please find yourself in what follows and know that you’ve made a profound impact on our lives. We pray that God will bless you abundantly and that someday, somehow we’ll be able to return the favor.

Dear You,

It’s Monday morning, and we’ve been home a little over a week. Home! Home after 6 long weeks in the hospital. Home in the house you helped clean and unpack so we wouldn’t come back to “empty” or “messy.” Home to the fresh walls you painted as carefully as you would’ve your own. Everywhere I look I see something to be grateful for:  floors that gave me fits but you finished them perfectly, a smooth ceiling where a giant hole once lived, an organized kitchen and a lawn cut (probably several times over in the length of time we’ve been gone). The fridge and freezer are full of leftovers from the wonderful meals you made, and even Echo the dog was well taken care of in our absence.

Around town this week, I’ve seen you in your t-shirts. I saw the pictures and the hashtags from far away too! So many t-shirts–each one proclaiming faith and telling the story of thoughtful, giving hearts. I read the words “Love for Livi,” and we do. We feel your love. I  realize the time and care it must’ve taken to get that many t-shirts out into the world. You didn’t have to do it, but you did.

I think back to the time in the hospital and remember all the times you called or messaged. It was as if God saw that things were getting hard or lonely or scary, and right in that moment, you sent a scripture or a song or an “I love you.” I got on Facebook and felt your prayers as the comments appeared.

A few times it got really tough, and I fought back tears when you walked through the door. You can’t possibly know how much I needed that or what it meant. You made time in a busy day. You drove hours to get to us. Or came from next door, giving selflessly even when your own baby hurt too. You kept coming again and again, and you even stayed through the night when we needed you.

When you visited, you brought hope in the form of stuffed bears and dolls and a lion (like Jesus, the Lion of Judah, you said) and Minnie Mouse (because Olivia will go to Disney too some day). You brought hair spray, snacks and replacement flip flops. You let me borrow your clothes and babysat while I got a haircut that you paid for. You brought meals from the real world when we’d had enough hospital food to last a lifetime. You brought speakers too, so that songs of worship would drown out the hospital sounds. You brought laughter and conversation and friendship, and we love you for it.

When you couldn’t come, you sent your love. You prayed. You asked how things were, and you kept asking. You sent funny stories and the snow balls you knew she loved so much. You held things together at home, loving on kindergarteners and teenagers when we couldn’t. You planned lessons and took care of end-of-school details. The work got done because of you.

You little ones helped too, praying your big prayers. Loving your friend and wanting her home. Making cards with your tiny hands and videos with your sweet voices.

When I think about all that you gave and how God provided for us through you, I’m in awe. We hardly had time to consider the impact of missing paychecks before being showered with the fruit of your selfless generosity. You took up love offerings and gave from what was yours. You bought t-shirts and slipped money in my purse when I wasn’t looking. You thought up ways to help, filling out applications on our behalf, gathering donations, and offering a scholarship. You made it possible for us to focus on sweet Olivia instead of worrying about money.

And when we finally came home, you made us feel so loved. They way you hugged and cheered when I walked into the office at school. How you little ones ran to me in the cafeteria. What a spectacle we made with you stuck to my legs, prattling your stories all the way down our hallway! I almost lost it when we walked through the church’s front doors, getting to go as a family for the first time in months. You lifted your voices, praising God for His goodness in bringing her home, and I could hardly contain the joy of getting to be there with you again.

Most of all you prayed, and I know you’re still praying. You believed, and that hasn’t changed. What we’ve needed and still need more than anything else is for you to stand in faith with us, believing for a miracle. You’ve done that. You’re doing it, and we’re stronger because of you. Thank you.

Love,

Us

I was so tired waking up this morning, and all I could think about was how badly I want to go home and how hard it would be to walk through those ICU doors for yet another day. As I was convincing myself to get out of bed, I heard the quiet voice of Jesus speaking to my heart.

“You have need of endurance.”

The words come from Hebrews 10:36:

“For you have need of endurance, so that when you have done the will of God you may receive what is promised.”

Endurance is not my favorite word. It reminds me of high school track and field when all I wanted to do was sprint, and anything longer than 200 meters seemed insane to me.

As I became more committed to the sport, my track coach suggested that I run cross country too. He said it would keep me in shape and make me stronger. I agreed to do it, even though the thought of running 2 whole miles set off all of my internal alarm bells.

I remember a race that was held in a park in my hometown. Lots of people that I knew were there, cheering from behind a barrier of bright triangular flags, flapping in the wind. About halfway through the race I got tired. All I could think of was the pain of the stitch in my side, and I quit. I walked off the trail and disqualified myself.

The memory is still so clear, because as I stepped off of the course I experienced a moment of physical relief followed by waves of deep regret. Almost instantly, I realized that if I had just kept going, the finish would’ve been worth the pain.

I also remember a practice run held at the same park. Then too, the pain became too much, urging me to quit. I chose to push through, and not long after, I experienced a “second wind.” Endorphins flooded my body, my stride lengthened, and I was able to finish strong.

What I want is for this 31 day long hospital stay to be over. But what I need right now is endurance. And what I believe is that the finish line will be worth it.

I recognize the second winds–graces from God–that have carried us this far …

–the prayers of preschoolers and more family and friends and strangers than I can count

–a little heart-shaped pillow made by someone I don’t know and covered with anchors that remind me of hope as the anchor of the soul

–the daily calls, messages, and visits that serve as a lifeline and remind me I’m not running alone

–a room at the Ronald McDonald house that has become more a respite than just a soft bed and a place to eat and do laundry

–the husband who sacrifices much to be here, who lets me sleep extra when I know he’s tired, and whose faith steadies me when things feel shaky

–the janitor who offered prayer, the security guard who asked how I was and really wanted to know, the nurse who makes me laugh, the doctor who came when she didn’t have to and the one who spoke hopeful words instead of fearful ones

–the many selfless gifts and the support that has made it easier to be here without worrying

–my new friend and 2nd time neighbor in the PICU, who has every right to think only of her own sweet baby, yet takes the time to love on me and mine too (*When you pray for Olivia, please pray for JaNell and her baby Miguel too.)

–the people who pray fervently, make sacrifices to show up (even in the middle of the night or after a long drive), who don’t stop asking and won’t stop believing, and have shown me the meaning of words like “family,” “friend,” “church,” and “love”

–The God who is nearer than ever before, who has proven His faithfulness time and again, and who orchestrated all of the above (and more that I will share another time)

GOD IS SO FAITHFUL! I can run with endurance, because He runs alongside. He reminds me of the surety of His promises. By his own example, Jesus has shown that the finish is worth the pain.

So I will take another step. That’s all endurance is. Just taking another step in the direction of hope and faith. It’s trusting that I can take another step and it will be OK. That no matter where my foot lands, it’s nothing God can’t handle. It’s believing that there’s victory ahead at the finish line.
*******

Olivia is doing better than the doctors expected. When the they diagnosed her with Steven Johnson’s disease–a severe allergic reaction to a medicine she had been given–they warned us about blisters, skin sloughing off, and involvement with the eyes and mouth that would mean the disease was affecting her internally as well. She has no blisters and no breaking or sloughing of the skin. Her mouth looks great, and there is a ring of white skin around both eyes that the doctors keep marveling over. Praise God, Jesus kept the rash from her eyes! The rash on her body is getting a little lighter each day, and her ears–which were swollen and purple–are almost white and down to normal size. 

Please keep praying that everything will continue improving faster than expected so that we can get out of the PICU and come home. Pray that we’ll stay strong in faith in the meantime and that Olivia won’t be in pain from the rash. Thank you ❤

It’s hard to explain what it feels like to stand face to face with a moment that you know you’re not strong enough for. A moment that should leave you crumbling to the floor, collapsed under the pain and the fear and the weight of it all. Even harder to describe is the feeling of meeting that moment and realizing you are not alone.

When waves of love crash harder than fear and the hand of God holds on with a strength that the enemy could never match. When peace doesn’t make sense but it flows like a river and grace is tangible, holding steady through the storm.

When the Holy Spirit whispers and God’s people speak so that life-giving words chase down and stomp out the doubt-filled ones. When the prayers of many literally lift you up and out of the pit.

I never wanted to be here. Here in this ICU, so sterile and anxious and full of pain. Watching over my baby girl, curled up small in a hospital bed way too big. Hooked up all over to machines that blink their numbers and beep with apprehension.

I didn’t want to be here, and I don’t want to be here, but I’m so thankful that I’m not alone.

Olivia had been crying all day–not just crying but having what one doctor termed “episodes.” This is what he called it when she started to cry out, gasping for air with her head arched back and eyes large with fear. Her lips and hands would turn blue. The oxygen stats would drop and her body went stiff in my arms as I tried to coax her into breathing again.

It happened over and over and the episodes stretched longer until we landed in the ICU. The doctors said it’s neurologic and a progression of the genetic disorder. They said there are two options:  we can treat it aggressively with strong sedatives meant to calm her nervous system (risking possible intubation or a tracheostomy) or make her comfortable and take her home on hospice.

The doctor’s words and the magnitude of it all hit me hard. I didn’t and don’t feel strong enough for the moment, but even as my own strength failed, His strength came barreling in. My Father keeps catching me and holding me and bolstering me up.

Because “grace sufficient” and “strength made perfect in weakness” aren’t just words from 2nd Corinthians, left by the pen of a man far removed from you and me. They’re livable truth, spoken from the mouth of our living, ever-present, never-changing God.

He is the only reason I can tear my eyes away from the O2 and respiratory stats long enough to type this. His voice is louder than the sound of science and medicine, and His promises are truer than the symptoms so evident.

He’s a God who is so good that He started preparing my heart even before I knew I needed it. He saw what was coming and tenderly drew my attention to the truth that would sustain me.

The night before the episodes got worse, Morphine and Toradol had provided a little bit of quiet and I was reading in John 10.

There are times you read the Bible just because you know it’s good for you. You take it in like vitamins, whether or not any remarkable revelation comes. Then there are times when the Word of God jumps of the page, illuminated in a way that reaches past the mind and changes the landscape of the heart.

My heart’s landscape changed as I read about Jesus, the Good Shepherd:

“He calls his own sheep by name and leads them out.”

“He walks ahead of them, and they follow Him because they know His voice.”

He “sacrifices His life for the sheep.”

The hired hand abandons the sheep when things get tough, and the thief only wants destruction, but Jesus is different. So very different.

The contrast is stark:

“The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.”–John 10:10

It reminded me of Deuteronomy 30:19, and I turned there:

“I call heaven and earth as witnesses today against you, that  I have set before you life and death, blessing and cursing; therefore choose life, that both you and your descendants may live; that you may love the Lord your God, that you may obey His voice, and that you may cling to Him, for He is your life and the length of your days … ”

Life. Abundant life. Poured out by the One who gave his life for mine and for Olivia’s. Jesus who walks ahead, calls us by name, and leads us out.

The image of Jesus as The Good Shepherd came alive to me, and I saw that there is no life apart from Him. Trusting in anyone or anything else is a treacherous substitute–a hireling that runs when the wolf comes.

So, when the moment came, I knew. I knew because I know the voice of the Good Shepherd.

The question … option 1 or 2? Aggressive treatment or hospice? I knew that this question, even though it’s the most difficult we’d ever faced, wasn’t the most important one. Olivia’s future doesn’t hang on a doctor’s expertise or even her parents’ wisdom. She belongs to Jesus and is forever secure in His arms.

He loves her. Oh, how He loves her, and He would give everything–He has given everything–so that she (and you and I) can have His kind of life.

Jesus IS life, and the more pressing question is do I trust that? Do I trust Him? Will I choose life by clinging to Him, refusing to follow the voice of another? The enemy–the wolf–would love nothing more than to sneak over the fence and  steal my heart and my peace and more. The hireling–this world and the artificial life it offers–will bail on me when things get rocky.

But Jesus never will.

This path that our family is walking is hard. It hurts and it’s scary and just … hard. But more than anything I’ve ever known for sure, I KNOW that Jesus won’t leave Olivia and He won’t leave me. I know that His heart is for us and His plans are good. Olivia is safe in His arms. Robert and I are too. No matter the path or how rough the terrain, He will guide us through. He is the Only One who can lead us to real life, and we choose to follow Him there.

I know that so many of you are praying for Olivia. Robert and I are so thankful. Keep praying. Our God is able! He works miracles! We believe He is doing and will continue to do miracles in and through Olivia’s life.

Right now, Olivia is resting well. The sedatives are allowing her to rest, and she hasn’t had any episodes since the “agressive” treatment started this morning. She is breathing well on her own, despite the strong medicine. The doctor’s plan is to give her body a chance to rest while they find the right combination of medicines to better control the episodes.

At best, the doctors offer Olivia more time and a measure of comfort.

Jesus offers more. He always offers more, and we choose to place Olivia in His hands and follow wherever He may lead.

The picture I attached to this blog is one of my favorites of Olivia. This is how I see her–smiling and laughing and full of joy. 

​

Can I just say that I feel broken? Broken, as in incapacitated. Not “together.”

Plenty of times since Olivia’s medical diagnosis, bad news has hit with gale force winds. Mostly, I’ve come up fists swinging. Or at least standing.

But at the end of today, I called myself broken, and I wasn’t wrong.

It was one of those appointments that you dread but know is necessary. For the swallow study, they mixed Olivia’s milk with barium and pointed a mammoth x-ray machine at her tiny, 4-year-old body. She laughed and kicked at the lead apron, and I watched the screen as liquid intended for the stomach escaped into her airway.

My mind had already spun through (and quickly rejected) a half-dozen “easy fix” solutions when I heard two words I’d been hoping never to hear.

I know that a feeding tube is not the end of the world. And, our pediatrician hasn’t yet said whether one is recommended.

But at the beginning of all of this, when we were only starting to understand the scope of what is meant by Peroxisomal Biogenesis Disorder, “feeding tube” got thrown around with other words like “degenerative” and “liver transplant.” Somewhere back there, I shelved all of those words–probably out of sheer need, I don’t know. But I think my mind wanted to put them all away–out of sight, out of mind. Somewhere different than right here and right now.

Today felt like someone reached up and swept a broom over a wall of shelves I’d tried to forget about. I found myself sitting among the rubble, trying to make sense of it all, helpless to put any of the pieces back together.

The technician was finishing the procedure. I busied myself gathering Olivia’s things and struggled to listen as the test results were relayed. Clasping my hands to hide the shaking, I tried to ask all of the right questions and then turned roboticly to follow the green arrows toward the hospital’s main exit.

Driving home with a smiling Olivia in the backseat, I cried for awhile and tried to pray but couldn’t come up with much. At home, I knew my husband was struggling too and that we needed each other badly. Instead of reaching out for him, I turned away and immediately hated myself for it.

Robert prayed, and then he made me get up off the couch and go to church. I sat in the parking lot until the last possible moment. Smiling half-heartedly at a few people, I found my seat and tried not to make eye contact with anyone.

Olivia made it through half of the sermon before she started to whimper. I had known she would be hungry soon. Still, my mind kept going back to the x-ray monitor and the fear that gripped my heart as I watched her food go down the wrong passage. The speech pathologist used the term “silent aspiration,” saying it could cause pneumonia. 

In the church nursery, tears spilled down my face as I held onto Olivia and tried to listen to the end of the sermon over an intercom. I wanted, needed, to do something, so I tried again to pray:

“God, can you please send someone to stand strong for me, because I just can’t right now.”

My heart settled some, and I heard the Pastor’s closing question:

“What do you want this church to be known for?”

He began to talk about a God who is big enough, real enough and who cares enough to work miracles. Then he answered his own question by saying:

“When people need a miracle, I want them to know that they can find one here.”

I heard the pastor ask Robert to bring Olivia up for prayer, so I carried her through the foyer and met my husband at the door.

The prayer, along with a realization of God’s perfectly timed answer to my heart’s cry, washed over me. Peace came again, and I met the eyes of a church family of people who had gathered to stand in faith and offer strength.

Like a bone that must be reset, brokeness opens the door to wholeness.

The God who did not cause my pain is still wise enough to use it for His glory and my good. Only in the emptying of me can I find all the fullness of who He is.

Broken. Incapacitated. Falling apart.

Offensive words, all of them. Unless we consider what Jesus has always able to do with broken things.

The blind see and deaf ears hear.
Ragged relationships are restored.
Hearts too far gone are raised to new life.

When I have nothing to offer, He offers all that is needed. When I am incapacitated (void of strength), His power is working at full capacity. Even if I am faithless, He is still faithful (2 Cor. 12:9; 2 Tim. 2:13).

Jesus Himself modeled for us a pattern of emptying and brokeness, followed by victorious wholeness.

“Have this mind among yourselves, which is yours in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but emptied himself, by taking the form of a servant, being born in the likeness of men. And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross. Therefore God has highly exalted him and bestowed on him the name that is above every name, so that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.”–Philippians 2:5‭-‬11 ESV

Sometimes, we don’t need to break ourselves or even to pray for brokeness. We only need to admit that we ARE broken and in need of something we cannot get for ourselves.

Know that Jesus’ body broke so that we can have healing. He emptied Himself so we might invite Him to fill every broken place.

It’s been one of those weeks, and it’s only Wednesday.

When I write, it’s usually an expression of my own faith or an effort to encourage someone else. Other times, I just need to spill out in ink whatever has been sloshing around in my heart.
Today, I’m writing because I need words of life and hope like I need to breath.

I’m missing family and aching for rest.

That test they call STAAR isn’t at all bright and shining.

Then there’s the unexpected hospital visit and the people that, well … say what they say and do what they do.

It’s the threat of failure. A cough that irritates like an incessant woodpecker. A lengthy to-do list and no energy to attack it.

But life has layers, and these are just surface situations. It’s hard NOT to look at the obnoxious stuff right under your nose, but there is more to be uncovered if you’re willing to peel.

Today, in totally un-Mrs.-Chapman-like fashion, I went to school slightly unprepared.

Nagging cold + 2 practice STAAR tests + baby in hospital = teacher who can’t bring herself to stay the extra hour after school.

I say slightly unprepared, because I did find a few minutes yesterday to scroll through the section of Pintrest that teachers call home. I found a strategy called “close reading” that I thought would benefit my students, so I emailed myself a few links and made mental notes of what would normally end up in my lesson plans.

Close reading is a technique that teaches kids to dig deeper–past surface-level details, in order to discover layers of meaning.

This morning, I wrote the definition on some chart paper and asked my 4th graders to tell me what is meant by “multiple layers of meaning.”

After a few answers like …

“It’s reading more than one book!”

OR

“Oh, that’s when you read something three times instead of just once.”

… I had an epiphany and decided to turn to the movie “Shrek” for help. 

We started to talk about how Ogres and onions have layers, and fifteen minutes later we were getting somewhere.

“Like … how you can’t judge a book by its cover!” one student shouted, and I breathed a sigh of relief.

“YES! I replied … and you have to dig deeper to understand what an author is really saying.”

A week like mine can have me thinking about life the way my students were talking about Ogres:

Stinky … ugly … rude … bald … green … with nasty teeth and earwax that sticks out (LOL!)

But Ogres have layers, and so does life. Sometimes you have to dig for what’s meaningful.

Onions can make you cry. Life too! But if you just begin to peel, you’ll find sustenance and something to hope in.

My family that lives far away? They know how to pray, and they do it faithfully. The people that live closer have become nearer to my heart, even as I’ve learned to lean on them in new ways.

When I feel like I can’t DO another thing, my sweet husband rushes in like Lancelot to save the day. And STAAR tests aside–one Shrek “light bulb moment” brightens my day faster than a thousand correct test questions.

My little Olivia–home from the hospital and sounding more like herself–she’s enough to pull anyone’s head out of the sand. She reminds me that a cough and a worry are nothing my Jesus can’t handle.

He is, after all, the only layer that matters.

“I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”–John 16:33