Olivia is off the ventilator now and doing well, praise God!

These last few days–after an unexpected helicopter ride and hours spent watching a ventilator breath for my child–I’ve been thinking a lot about hope. Not the fleeting sort, but God’s “anchor for the soul” kind (Heb. 6:19) .

What a gift hope can be! It’s rooted in our experience of God’s unfailing love. We know that God loves us dearly, and so we can have faith in His Word and in who He is. That produces peace that persists through the most difficult of times. Even in hardship, we can be filled with joy and expectation, knowing that God is good and faithful to His promises.

It’s amazing to me how God can use a temporary circumstance to build in us the things that are eternal. Hope. Faith. Love.

That is my prayer for me and for you–especially during a season that has always been about hope:

–Hope at the words of a prophet, “For unto us a child is born, unto us a Son is given (Is. 9:6) …”
–Hope for Israel’s coming Messiah, unquenched by hundreds of years of silence
–Hope in the promise of a Savior, spoken through an angel to a confused teenage girl
–Hope that led wise men from the East to follow a star, despite the length of their journey
–Hope that spurred a group of terrified shepherds on to Bethlehem that first Christmas night

… and hope that was answered by a baby, “wrapped in swaddling cloths, lying in a manger (Luke 2:12).”

~~~~~

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.”–Romans 15:13

“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.”–Romans 5:3‭-‬5

“Three things will last forever—faith, hope, and love—and the greatest of these is love.”–1 Corinthians 13:13

“A thrill of hope, the weary world rejoices. For yonder breaks, a new and glorious morn.”
–“O Holy Night”

My sweet mama sang a song this morning in church that reminded me of the story of Shadrach, Meshach and Abednego. It is found in Daniel chapter 3 and tells how three Hebrew men–having been taken into captivity by the most powerful Babylonian king in history–refused to bow to a massive 90 foot idol.

King Nebuchadnezzar had erected the statue and then gathered officials from every province. He demanded that, at the sound of musical instruments playing, they kneel and worship the golden image. Music began to play and the people bowed–all except for Shadrach, Meshach and Abednego.

The king “flew into a rage and ordered that Shadrach, Meshach, and Abednego be brought before him (verse 13).” He then offered them another opportunity to bow:

“I will give you one more chance to bow down and worship the statue I have made when you hear the sound of the musical instruments. But if you refuse, you will be thrown immediately into the blazing furnace. And then what god will be able to rescue you from my power?”–Daniel 3:15 NLT

The words of the Babylonian king reverberate in my head.

“… one more chance …”

“… what god will be able to rescue you from my power?”

You see, this past weekend brought with it another chance to cower to fear–another chance to question the heart and ability of God.

I was at a playoff pep-rally on Friday when I got a text from Olivia’s nurse saying that she wasn’t doing well and the medicine wasn’t helping. I got a ride back to school and found Olivia crying–in pain maybe, or from one of the neurological episodes that have been more frequent lately.

The episode was getting intense, causing her oxygen level to drop, so I asked the nurse to give her more medicine. It was the last dose she could have for hours, and we watched her suffer for another 45 minutes before it finally started to kick in.

This had gone on for weeks. I’d talked with the neurologist at Cook Children’s, but nothing we tried was working. So, I called Robert and we decided to take her into the emergency room in Fort Worth. I guess I hoped that if we put Olivia in front of a doctor, someone would find a way to help.

After hours in the emergency room, though, the ER doctor came in and sat down next to me:

“Neurology doesn’t have any more ideas.”

The doctor offered to admit us to the hospital anyway–if that was what I wanted. But he made sure I knew that there would be nothing new as far as treatment or medication changes. To increase the dose of Olivia’s meds would be to put her at risk for other, worse complications.

So, we came home and I faced a new opportunity to bow.

———

When someone you love has been given a terminal diagnosis, doctors and people tend to want to prepare you for the pain and ugliness they envision further down the road. Fearing a future moment and its potential to cause damage, they try to soften the blow early on. This is something that our family has dealt with for years now, and I get it. They mean well, and maybe they’re not wrong.

Still, I let go of Olivia a long time ago. With God’s help, that act of surrender is something I repeat each time I feel my heart being gripped by fear and my hands clenched in a posture of willfulness. But I release her to the tender, open hands of our loving Father–not to the schemes of the enemy of her soul and mine. I bow to my God–not to fear’s idols of control, self-sufficiency, and finding security in what the world can offer.

Because there is an unseen spiritual battle behind this formidable physical one, and the outcome of the spiritual is SO much more important than the one I can see.

There is much I don’t understand, but one thing I know is this: fear is not from God. In fact, HUNDREDS of times the Bible tells and teaches us not to be afraid.

“This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”–Joshua 1:9 NLT

“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.”–Psalms 23:4 ESV

“There is no fear in love, but perfect love casts out fear.”-‘1 John 4:18a ESV

… and my personal favorite:

“Don’t be afraid. Only believe.”–Mark 5:36 HCSB

Fear will become a king, a god, an idol … if we let it.

The love of God will overwhelm fear … if we let it.

So as I face “one more chance” to bow, my answer has to be a resounding no. With Shadrach, Meshach and Abednego, I say:

“O Nebuchadnezzar, we do not need to defend ourselves before you. If we are thrown into the blazing furnace, the God whom we serve is able to save us. He will rescue us from your power, Your Majesty. But even if he doesn’t, we want to make it clear to you, Your Majesty, that we will never serve your gods or worship the gold statue you have set up.”–Daniel 3:16‭-‬18 NLT

I don’t want to walk through fire. Watching my baby hurt is heart-wrenching. I don’t want my family to walk through fire. If only there was an easy answer–a quick fix for the pain. But I believe that if we must walk through it, we won’t be there alone. Our God is with us, and I trust that we’ll come out on the other side unscathed.

“So Shadrach, Meshach, and Abednego, securely tied, fell into the roaring flames. But suddenly, Nebuchadnezzar jumped up in amazement and exclaimed to his advisers, “Didn’t we tie up three men and throw them into the furnace?” “Yes, Your Majesty, we certainly did,” they replied. “Look!” Nebuchadnezzar shouted. “I see four men, unbound, walking around in the fire unharmed! And the fourth looks like a god!” Then Nebuchadnezzar came as close as he could to the door of the flaming furnace and shouted: “Shadrach, Meshach, and Abednego, servants of the Most High God, come out! Come here!” So Shadrach, Meshach, and Abednego stepped out of the fire. Then the high officers, officials, governors, and advisers crowded around them and saw that the fire had not touched them. Not a hair on their heads was singed, and their clothing was not scorched. They didn’t even smell of smoke!”-‘Daniel 3:23‭-‬27 NLT

The same God who walked through the fire with Shadrach, Meshach, and Abednego is with us too. He has promised it:

“When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.”–Isaiah 43:2 NLT

Since Olivia was diagnosed almost 5 years ago, I’ve known there is no medical cure. Yet, I have always felt a sense of obligation to lean on the knowledge of doctors and medical professionals. There’s nothing wrong with that. God has used them many times to help our sweet Livi.

But oddly enough, now that I’ve heard the doctors say, “We have no more ideas,” I feel a sense of relief and freedom. Like I can give myself permission to throw the full weight of my trust on God.

“I look up to the mountains— does my help come from there? My help comes from the Lord , who made heaven and earth! He will not let you stumble; the one who watches over you will not slumber.”–Psalms 121:1‭-‬3 NLT

My hope is in Him alone–by necessity and by choice. And I believe I will hear the Nebuchadnezzars of this world proclaim:

“There is no other god who can rescue like this!”–Daniel 3:29 NLT

I was a “bucket filler” for Halloween this year. Problem is, I didn’t know what a bucket filler was until after I had already covered my shirt with confetti shapes and climbed into my very own bucket–a spray painted laundry basket with the bottom cut out.

“What are you Mrs. Chapman?” asked a curious student decked out in a Bulldog helmet and full pads.

“You’ll find out soon!” I answered, secretly hoping that I would too.

In retrospect, I really should’ve Googled the phrase or asked one of my fellow bucket fillers to explain. (Our fourth grade team of teachers dressed alike.)

But I was soon enlightened when we sat down as a grade level to read “Have You Filled a Bucket Today?” by Carol McCloud:

“All day long, everyone in the whole wide world walks around carrying an invisible bucket. You can’t see it, but it’s there.”

As the book progressed, I learned that bucket fillers are those who consistently pour into the “buckets” of those around them through kind words, actions and generosity.

The story was perfect for elementary students. It made me feel inspired and also a little overwhelmed, to be honest. All I could picture was my growing collection of spinning plates.

The author’s words were soon buried beneath a pile of unfinished tasks, lost in the busyness of work and home.

Until I was scrolling through Facebook a couple of days later and came upon a blog post by one of my favorite authors, Ann Voskamp. The article was about … buckets, of all things:

“Maybe empty buckets — are the fullest kinds of buckets.”

And …

“Christ poured Himself out — to make us new vessels. And as we pour out the Christ in us — Christ makes new vessels all around us — and in us.”

Her words fell like raindrops on a thirsty heart. See, lately I’ve become keenly aware that my bucket is not emptied near often enough.

I’ve watched noble examples of the many people in my life who give of themselves until it hurts …

• The teacher who’s plate is over-full, and yet she makes time to mentor others.

• The hurting ones who set aside their own grief to comfort another.

• The pastor’s wife who takes the time she doesn’t really have to offer a listening ear.

• The husband who gives and gives some more, with no thought for himself.

• The mom who is generous, almost to a fault.

At the same time my eyes are being opened to the immense need that is present in my own circle of influence …

• That young student in a class of 18 who really needs some one-on-one time, and the other one who takes my attention by force for reasons I haven’t been able to sort through yet.

• The sweet daughter who needs everything, yet asks for nothing. I would do most anything to make her smile.

• The teenagers who struggle with identity and self worth and finding their way forward in a messed up world.

• The hungry ones and the broken. The hurting and those who struggle.

It is so easy to feel helpless. Then there’s me and my own great need.

I think sometimes the pain in our stories makes us want to hold onto what we have–especially those things that seem the most fragile and fleeting.

And when we fear we won’t have enough of something–whether time or money, moments of peace or the strength to go on–we start with the stockpiling and secret stashes.

It’s hoarding really, but that’s hard to recognize if you’re the one doing it.

Of course there is a balance to life that only God’s sweet Spirit can teach, but holding on for fear of running out just doesn’t feel like trust.

And in the deepest places of my heart, I so badly want it to be said of me, “She trusted God.”

I think of the widow in I Kings 17 who had “only a handful of flour” and “a little cooking oil.” She was asked to give the last she had, and through her obedience, God provided more than enough.

So, I’m beginning to believe that the answer to my need, and “theirs” too, is found at the bottom of the bucket.

That weakness makes way for God’s strength, and emptiness is where grace is found.

I remember that this is God’s way.

“If you cling to your life, you will lose it, and if you let your life go, you will save it.”–Luke 17:33

Father,

Teach me to be a bucket filler even when it’s scary. Help me trust that You will always be enough. When I’m tempted to hold on for dear life, show me how to let go. When my own story hurts and it feels safer to build walls, remind me that those walls will keep the love from flowing out. I believe that You are able to fill me up anew, even as I allow my life to be poured out.

In Jesus’ name,

Amen.

“Pouring out your heart — is what will actually hold your heart together. Pouring out your life — is what will elevate your life.”–Ann Voskamp

“And remember, when you fill someone else’s bucket, you fill your own bucket too.”–Carol McCloud

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.