The Ugly Truth

Annie paraded around the ICU

-chained to a rolling IV tower,

-face leashed to rubber airflow,

-directed by an overeager five-year-old,

-prodded by an overaggressive nurse,

-filmed by an excited aunt,

-hand in hand with an anxious mommy

-moaning and crying with each tiny wobble.

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What a spectacle. With every groan, new onlookers spotted the procession. I felt equally ridiculous and proud, coaxing her a few more steps to show her the windowed corner unit her frail body rested in when she was a wee four-day-old. “And then look over here, this is where you were at eight weeks old. Oh and over here is where you were at three months old.”

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I wanted to shudder. All those tiny sick babies held by lovesick parents just doesn’t seem right. I felt terrible interrupting their sacred moments with my wailing toddler. I looked apologetically into each staring eye.

Until I remembered.

One night I sat in that windowed corner, lovesick, rocking a tiny sick baby late into the night. It had been four long days since I’d had my hands on her. Holding her felt like I could die from the delight and the fear. I sang her the song I’d sang while she grew in my tummy and the world around me stopped. The next day she’d receive her first scars.

One day I sat in that private room, begging God to heal my newborn’s failing heart. Crying over diminished echochardiograms, enraged by sky high BNPs, and too homesick to breathe.

One morning, I finally laid my eyes on her again. Three hours after I’d given her to them. She looked lifeless, swollen, and I knew she was mine.

Those intense survival moments were each joyfully interrupted by a post-Fontan parading toddler. Moaning, wobbling, face leashed to rubber oxygen, tethered to the IV pole. Excited aunt filming each step. Anxious mom holding on tight.

On those days, my eyes were the staring eyes, the begging eyes, the envious eyes, the hoping eyes. What if maybe someday that could be Annie? What if that jagged cut, the swollen head, the IV drip, the aggressive nurse, the bruised pokes were worth it? What if someday the ugliness of today could get us to the beauty of that grunting progression?

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Moments ago, I gently bathed an ICU wrecked girl. Today, nine days after open heart surgery number three, Annie was discharged. Sticky residue still covers her elbow from the every morning prick. A jagged scab flakes from her incision. I pinned her down to peel off the last super glued dressings. She kicked and spit at me while I tried to speak softly and tell her that what I was doing was from deep brave love.

But now I sit laughing and selecting kitty stickers in a Philadelphia hotel room. A smiling pink lipped girl hides her battle scars with giggles and remember whens.

Remember when we went to Disney? Remember when I was a baby in that tiny room? Remember when I drove my Barbie car? Remember when the doctor said I could go home to the hotel today?

In about an hour I’ll have to restrain her again, convince her to choke down medicine that she’ll spew back in my face, and then hide my tears so that she’ll choose courage and swallowing.

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Remembering the ugly is traumatizing. Living the current ugly is scarring me.  Basking in the absolute beauty of ongoing healing makes it feel the tiniest bit worth it. We’re brushing off the ashes today, wondering what garden could ever grow in this barren place.

But we’re believing in the faithful God who has made beautiful things out of our wretched dust for the past three years. We’re clinging to the life and love and normalcy that has grown from the ugliness of those hope-filled rooms. Because of those frightful days that we’ve gasped through too many times, we can look full shining faces to the future.

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When you Can’t Go Back

8 days ago I nuzzled a 3yo snuggler awake. My touch was soft, gentle. She didn’t want to wake up yet but still she turned to me and smiled. 

This morning I settled a thrashing 3yo awake to shake her from her own nightmare. “No, no, no!” she wailed and rolled and screamed. When she felt my touch, she flenched and fought more. She thinks I’m at her bedside to help a stranger force pricks, pokes, and pain.  

8 days ago, my brave and compassionate 5yo comforted her little sister. “It’ll be ok, Annie. I’ll push you for a ride around the hospital.” Yesterday, Audrey clawed my legs and shrieked in hospital bathrooms, protesting having to leave me for another night. “No one ever let’s me do anything here!!! It’s always about ANNIE!” 

8 days ago, I was dreading but hopeful about Annie’s third open heart surgery. Today,  I’m sitting next to my normal acting girl who’s still in the ICU because of a post op complication. Every morning the anxiety grows again as a team reminds Annie that she can’t eat at 4am, X-rays her at 5am, then starves her until 9 debating their decision. Annie has a pleural effusion, which is a significant amount of fluid filling up the pleural space between her right lung and chest wall. 


I can hardly remember who we were 8 days ago: rested, agreeable, thinking we might have gone home by now. Now in survival mode we’ve forgotten about home. Trading off nights asleep on hospital couches, arguing for midnight meds to be moved, pretending the beeps aren’t sounding, trying to manage my own trauma every time blue scrubs come through the door. ​

Last night we asked each other why we wanted this. Today I’m knowing my name is the one on that consent form. I’m responsible for her nightmares, her real life terrors that are justified. Our decision is the reason for the distress and dysfunction and desperation we can’t escape right now. ​

​We’re thankful Annie’s surgery went well but we are weary in the waiting. We have hard days behind us and hard days in front of us. This strange fight for survival isn’t over yet.

When it Might Be the Last Time

When it might be the last time, you let her steam up the bathroom with a way too long shower.

When it might be the last time, you comb out curls more carefully, wrapping each one around your fingers getting the perfect scrunch. 

When it might be the last time, you join in with sister shared giggling and cuddling late into the night. 


When it might be the last time, you swap sleep partners and sweaty snuggle your 5yo in preparation for unknown weeks ahead of nights apart. 

When it might be the last time, you squeal at the tummy tickles on the bumpy sunrise shuttle ride to hospital checkin. 

When it might be the last time, you smile big and act brave when she asks if it will hurt. 


When it might be the last time, you ask for a wide bed that will sleep both of you until tomorrow’s date. 

When it might be the last time, you starve on cafeteria crackers and cheese cubes because you can’t keep anything else down. 

When it might be the last time, you rejoice that the surgeon said yes to the final stage of her repair. 

When it might be the last time, you listen closer to the risks: stroke, clots, organ failure, death.

When it might be the last time,  you focus instead on the hope her doctor gave. What if it actually works?!

When it might be the last time, you thank God for every time before that’s he’s given you and believe that what he chooses to give is always enough. 

Annie is a yes tomorrow morning for her third open heart surgery. Her heart really isn’t in great shape, but they’re choosing to give her a try. While tonight might be the last time I get to hold her, I’m praying that it’s the last time I ever have to send her for surgery. 

Either could be true. God knows which one we need. 

Third Time’s the Charm

In three days, we leave home and don’t know when we’re coming back.

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In three days, we’ll rustle our kids awake in the still-dewy hours of the morning. We’ll check the house locks one last time. We’ll look longingly at the playroom full of mess and life. We’ll bid farewell to our kitchen table and center island where two little girls say jokes and prayers over nightly dinners of cheese sticks and avocados.  We’ll dump our summer porch shrubbery in the trash since the July heat isn’t forgiving enough to let dry flowers flourish.

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In three days, we’ll board a 6am flight to arrive in a city across the country by lunchtime. While we get our bags from the airline belt, we’ll wonder where to stay for the night, making the daily call to the Ronald McDonald house to see if we have a room yet. We’ll take the familiar train to the right intersection and walk a couple blocks. One of us will push tired girls and the other will drag our few zipped-tight possessions.

In three days, we are taking our three-year-old to Philadelphia in hopes that her world-renowned surgeon will agree to perform her third open heart surgery. We don’t know yet if her broken heart is healthy enough to undergo the operation. We don’t know yet if her birth heart is still worth salvaging.

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To find out, Annie will have a cardiac cath and MRI to determine her heart function on July 31. We planned for this to be earlier in the summer. To be home by school start. To know the outcome in time to make undistracted decisions. July 31 isn’t the day I wanted for this.

Ironically, three years ago, on July 31, 2014, we waited for the same answer. Is her heart healthy enough to make it through this surgery, we asked her surgeon as he suited up to open her chest the second time. Remember you told us it wasn’t? Will she make it through? we pressed him.IMG_3561

His wry grin gave the good news away. “On her pre-op heart echo, her heart function looked normal. We can’t explain why. We don’t understand it. It can’t be the medicine. But her heart is ready for this procedure. I think we’re witnessing a miracle today.” He told it matter of factly but belief gleamed through his eyes.

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I realized in reflecting on the timing of Annie’s care,  that this day, July 31, 2017, is the perfect day for this. We’ll be asking for, waiting on, fully expecting

-the same miracle

-from the same reliable God

-on the same day

-from the same doctors

-in the same room

-at the same center filled with hope.

I’m in awe seeing that while it didn’t match my summer schedule, God’s timing is perfect.

If they say yes to the operation, Annie will have open heart surgery the next day, Tuesday, August 1. If they say no, there are countless unknowns ahead.

Will you pray with us about the decision for Annie’s surgery? Pray that we’ll remember that God knows what He’s doing.  That we’ll trust that God’s plan for our family is the right plan for our family. That we’ll choose to make Him known in the waiting and the wondering. That we’ll know this is not our home anyway and that we can find belonging anywhere in the comfort of His care.

In three days, we’ll be sad and scared and wishing it was different. In three days, pray that we’ll cling to hope in the midst of it all.

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Stay

She grips me tight and whispers, “Stay! I like you so much.” I give her one last kiss and wriggle free from her tired arms. When she catches me peeking back for a final glance before I flick the light out, she begs again, “Stay!”

Annie is learning to go to bed on her own. I’m learning to let her. That sweet embrace and warm invitation to sit there by her through the night are hard to turn down. Besides, she likes me so much!

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Especially as the days wane to our hospital report date, on July 28, I want to stay in these moments forever. My final looks are getting longer. I study every breath, trying to seal every touch in my mind for the days ahead.

Audrey pops out of her room early on a weekday morning. She carefully laid out three outfit options. Dressed in one, she already had her bow clipped in. “I did it all myself, Momma! Even my bow, see?” I note how pretty she looks from the bow, but mostly the glisten of pride in her eyes. I tuck the sparkle away for another day soon when her brightness might be hidden.

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I creak the backdoor open to announce dinner’s readiness. I decide instead to watch Matt sweep the girls up higher higher, Daddy, in their swings. He sends them flying to squeal and kick in full underdog delight. So what if we have to enjoy a cold chicken dinner on the deck as audience to a live fishing show taught by my 5- and 3-year-old fishing pros who “aren’t hungry yet.”

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The 30-day countdown is really getting to me. “Stay. I like you so much!” I plead with every normal moment. “Stay, let me soak you up a little longer so that my memory will never let you go.”

Stay, routine tuck ins.

Stay, sparkling eyes.

Stay, giggling girls and swinging Daddy.

Stay, poolside picnics.

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This morning Annie informed me that when she gets older, older and bigger, bigger she’s getting a cat. And when she’s a mom with that cat, she’ll name him Gilbert. Stay dreaming, brave girl.

As I listened to her future plans, knowing the statistics that they’ll ever come true, I drowned in the what ifs. Literally gasping for short breaths underneath the tightness of my chest, I cried for time to stop. For this moment to stay.

A verse I’ve been meditating on lately came to mind: “You keep him in perfect peace whose mind is stayed on you, because he trusts in you.”

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Stay, mind, on the nearness of God’s presence. Stay, heart, in the hope of eternity. Stay, faith, in the strong anchor of our good God.

 

Until It’s Time to Face It

Last night it hit me. I’ve given the last bath and that well-loved rocking chair in the corner of our bedroom sits idle and empty.

I used to wrap up wet babies and tuck the towel tight. On my hip I’d bounce them to their rooms singing, “20 pounds of sugar coming into to-own.” Then one day it was 30 pounds of curly-haired, giggling sugar. Still, one by one, I’d heave tiny girls up on my motherly perch and bounce as high as I could get them.

I’d carefully comb tangled dripping locks. Then velcro a diaper in place before chasing a baby around with footed pajamas she never wanted zipped up.

Once I caught her and sealed the fuzzies shut, I’d settle in for a night of harmonizing to lullabies and rocking her to sleep. “He’s got my little bitty Annie in His hands…” As she grew, she set her bottle aside during this rendition to make big circular world motions while I sang. Her warm milk was welcomed back upon starting song #2, “Jesus, Jesus, Jesus in the morning. Jesus in the noontime. Jesus, Jesus, Jesus when the sun goes down.”

Last night, though, I didn’t give any baths, sing a single lullaby, or rock anyone to sleep. Last night, I warmed up shower water then peeked in the bathroom every few minutes to make sure my 5-year-old and 3-year-old put conditioner in their hair. Asked if they had sufficiently scrubbed their armpits. Then handed towels to girls who prefer wiping their own faces dry.

Last night, I didn’t bounce 40 and 50 pounds of sugars to their rooms to velcro diapers or stuff reluctant feet into designated leg holes. Instead, I set out panties and let them pull their own princess PJs from dresser drawers.

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Last night, I cleaned and twisted my big girl’s earrings so that her new piercings will heal. I promised Annie that yes, on her 5th birthday, she, too, can get her ears pierced.

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Last night, I read three Bible stories snuggled in Audrey’s bed between two big girls who have the words memorized and whisper their own bedtime prayers.


Last night, I realized I’m watching Annie grow up. This broken heart that wasn’t supposed to get her anywhere has sustained her to this curious little girl. Holding a fuzzy caterpillar yesterday, she exclaimed, “Momma, I brave!”

She’s so brave that last Thursday she proudly mounted the echocardiogram table all by herself. She smiled and chatted with the nurse. But she still reached over for my hand while the technician captured pictures of her heart.

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I’m glad that she’s always been brave. God knew what type of courage Annie needed.

Last week, a phone call from Philadelphia reminded me of the courage we all need because our days are certainly numbered. The scheduling nurse informed me:

-Annie will report to CHOP for pre-admission testing on Friday, July 28.

-She’ll undergo a cardiac catheterization and MRI on Monday, July 31 to see if she’s eligible for the (hopefully) final open heart surgery she needs.

-If the doctors agree that she is a candidate this year–after being deemed ineligible March 2016 due to severe heart failure–her surgeon, Dr. Spray, will perform the Fontan surgery on Annie on Tuesday, August 1.

It’s time for us to live up the summer that is ahead of us. I’m praying that we can put off worry about Annie’s surgery outcome until we have to face it at the end of July. I’m praying that we can enjoy every day God gives us and trust His perfect count of them.

Last night, I realized that instead of being sad that my girls aren’t babies anymore, I’m so thankful for the privilege of getting this growing number of days with them.

 

Is a Broken Baby Worth It?

Children with special needs cause suffering to their parents, their communities, and to society. Children with special needs are expensive to personal pocketbooks, insurance companies, and local and federal governments. Children with special needs endure hardship on their own that make their lives not worth it.

I read these words in online articles. I heard these words grumbled under leery onlooker’s breaths. I denied these opinions forcefully imposed by outside caretakers.

These words were especially terrifying 3 years ago while I walked the Baptist Labor & Delivery hallways trying to speed Annie’s entrance. I almost tried to hide my excitement.

-Wasn’t I naive for wanting my broken baby?

-Weren’t we crazy for choosing life?

-Would I ever get to hold her and keep her as mine?

-Would she thank us for fighting for her or live ashamed of her limitations and imperfections?

The haze of questions stopped swirling the second I met Annie.  10256627_696465461269_7435127574157617177_o

Still, swirling aside, it was clear the words were right the first time I held her: tangled in wires sick as could be. The pain in a mother’s heart and the hunger growing in her belly couldn’t be denied.

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She wasn’t allowed to be fed until after her open heart surgery, which happened at 5 days old.

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But then she got better see? Her tummy welcomed its first milk when she was 8 days old. And we were one big happy family…

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…Who was forgetting the fear. Loving instead. Forgetting the “what ifs.” Believing instead.

The bills came. And the words were true: children with special needs are expensive to personal pocketbooks. And expensive to communities who have loved us so much to drop anonymous checks by the athletic office, to give a prayerful donation through our Go Fund Me, to bring over a hug and money-filled handshake.

At 15 weeks old, Annie underwent another open heart surgery. The words were true: children endure hardship on their own.  60% chance of surviving the operation didn’t mean anything to a little baby living out God’s miraculous plan.

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The first few months of Annie’s life proved all these terrifying details. But there’s one thing about those words and opinions that was sorely wrong. Annie’s life has been worth living.

I’m certain this tiny smiler would agree. 20140610-205221-75141340.jpg

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I assure you this snocone slurper is satisfied.

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I know this cookie baker is confident.

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This uncle snuggler is sure. So is the uncle.

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This sister wrestler

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Truth declarer

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Is defying all the odds and declaring all God’s glory.

Our appointment in June is coming. Much too fast. Much too certain. Much too soon. And we don’t know how it ends. 

Some days lately I find myself lost in the haze.

I know that in a few weeks I’ll be scared to death sitting in some waiting room. But in that moment I am going to close my eyes and remember all the TODAYS I’m getting with Annie.

Happy 3rd birthday to our miracle baby who reminds us every day that life is always worth it.


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