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.

 

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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

I know this bedhead wouldn’t argue.photo (4)

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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The Day I Knew She Wasn’t Normal

You would think that I’ve always known. But it wasn’t until just exactly yesterday that I finally realized Annie isn’t normal.

You would think that this day: when she left my side as a 2-hour-old neonate to travel across town without me while I lay confined to a delivery room bed recovering from her birth would have informed me.

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Or this day: when I prayed she’d take another breath and the swarm of nurses could subside.

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Or this day: when they told us our 10-week-old would die from the common cold.

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Or this day: when I consoled my 3-month-old hours after her second open heart surgery, patch still covering a tautly-stitched chest. IMG_2916

Or even this day: when Annie smiled proudly, recognized as the cutest little survivor of heart disease.

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But it wasn’t until just exactly yesterday that I finally realized Annie isn’t normal.

Her cardiologist cleared her for Tumbling Twos. “Go for it,” he said. “But educate her teacher that she may–or may not–get more tired than others. Let her rest–but don’t make her.She might turn blue. It’s okay. Let her rest and return when she is ready.”

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Her gymnastics coach set up the obstacle course yesterday. She lined up 1 mini tramp, 2 mini tramps, 3 mini tramps, 4 mini tramps, 5 mini tramps, that ended with a super stretch and forward roll.

Annie bunny hopped bravely, giggling the whole way…1 mini tramp, 2 mini tramps, 3 mini tramps, 4 mini tramps, 5 mini tramps.

Stretching. Rolling. Smiling. Beaming.

Panting. Purpling. Huffing. Puffing.

Coughing. Smiling. Jumping. Giggling.

Gasping.

She ran to me for a gulp of water and whispered, “Momma, I can’t keep up.” But once her sip was swallowed, she ran back to her place in line. And again…1 mini tramp, 2 mini tramps, 3 mini tramps, 4 mini tramps, 5 mini tramps.

Stretching. Rolling. Smiling. Beaming.

Panting. Purpling. Huffing. Puffing.

Coughing. Smiling. Jumping. Giggling.

Gasping.

For 45 minutes, it went on. A purple-lipped Annie heaving for air. But she wouldn’t quit her routine.

From the side seats, I struggled to remind myself of the last comment of her doctor’s approval note, “She won’t hurt herself with overexercising.” I struggled to remember why I thought I should enroll my heart failure child in gymnastics.

I expected that I’d be embarrassed the day I realized her physical limitations. I expected I’d be sad the day I saw her struggle to keep up with kids her age. I expected to be angry that it was my child who was different.

I was wrong.

It was the proudest I’ve ever been to be Annie’s mom. I was thankful that half-hearted girl disguised as a normal kid bunny hopped and rolled. I was thrilled that she never gave up. I was in awe of her courage to fight fiercely to finish her set. I was inspired by a little girl who huffed and puffed but kicked and smiled through every short breath.

And so, just exactly yesterday I realized that Annie isn’t normal. Not even close. Her determination, her will, her fight, her spirit, her tenacity, her heart are not like any other child’s I have ever seen.

Instead of embarrassed, I am beyond proud of my little girl who continues to show us that there’s something better than normal.

 

Something You’re not Supposed To Get

There’s a house that feels like heaven that’s half empty since Saturday night.

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It’s still aglow with sunset warmth and red dirt wander. But it’s missing my Papa who roosted in the lounge chair tucked in a corner of his deer head covered room. Firearms and pocket knives might’ve scared off wary intruders, but tins full of holiday popcorn and tales of lakeside adventure lured in curious little girls.

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“Sit in here, Tracer, and tell me how you’ve been.” The invitation started before I was old enough to remember. Sometimes we’d sit in opposite reclining chairs. Sometimes I’d bounce up in his lap.

Sometimes he’d take me out back to pull start a three-wheeler for my riding pleasure. Sometimes he’d walk the long road to rescue a stalled three-wheeler on the other side of the railroad tracks.

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Sometimes he’d show me how to pump water from a deep ground windmill well. Sometimes he’d let me beat him in a game of driveway basketball. Sometimes he’d watch me ride the front yard poultry. Sometime he’d crank up the kitchen jukebox to get the girls dancing. Sometimes he’d tie the tree swing up tight and give me a push to send me flying high over the propane tank.

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But he’d always tell a story…

-He knew how to decipher who could speak English by naming the color of their shoes.

-He knew how to hunt and knew how to shoot.

-He knew how he liked his coffee and exactly when he wanted it.

-He knew how to sport overalls.

-He knew how to pick a woman who’d serve him well for life.

-He knew how to make a two-year-old giggle by pointing a wrinkled finger into bright eyes to announce, “You’re full of beans!”

-Mostly he knew how to love four girls who weren’t “his,” and the grandchildren they gave him.

Sometimes in life you get something you weren’t supposed to get. And you ask God why. Like a baby with half of her heart missing.

But sometimes in life you get something you weren’t supposed to get. And instead of asking God why, you just tell Him thank you. Like a Papa who you didn’t share DNA with but who loved you like you did.

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http://www.wilsoncares.com/obituaries/Harmon-Eoff/#

 

Until They Find the Other Half of Your Heart

Annie giggled and squished her syringe of heart failure liquid through her teeth. “I used my elbow to push it that time, Aud-ray!” she bragged. Then she chomped and swallowed the powdered half pill to keep her blood thin and easy to circulate.

Audrey is our regular medicine monitor: ensuring that Annie does in fact chew and swallow every tidbit and that not a drop remains to wet the syringe. She broke her somber observation: “Annie, you only have to take that until they find the other half of your heart. Will they find it soon, Momma?”

It sounds so simple, doesn’t it? Where IS that other half of Annie’s heart that she’s been missing for so long? Why didn’t God put it there in the first place?

The downward spiral can get lightning fast when I see Annie’s broken heart breaking other hearts I love.

The truth that I can’t figure out how to tell a 4-year-old big sister is that the doctor says Annie’s heart isn’t getting better.

The truth I keep arguing with God over is that the doctor says Annie’s heart isn’t getting better.

The truth that doesn’t make sense from a fat and happy thriving 2-year-old is that the doctor says Annie’s heart isn’t getting better.

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After Monday morning’s school day, Audrey casually shared, “Did you know some people are discontent?” I tried not to laugh, but how did she know discontent? I pressed for more, requesting a definition of this new word.  “That means that they forgot what God has already done for them and they just want more or something else instead.”

Discontent: when I only want healing through the pictures on the screen in the heart echo room.

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Discontent: when I’ve forgotten that every day with a 2-year-old whose body continues to thrive while her heart continues to fail is miraculous ongoing healing.

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I want to start letting a new word define our life. A life that I can often think is unfair. A life I too often think is unwanted. I life I often wish someone else had instead of us.

Abundance: an extremely plentiful or oversufficient quantity or supply. Isn’t THAT what we’re getting with Annie? More days than promised. More health than hoped for. More love than I ever dared commit to give.

Yes, this is the abundant life. And that is a truth I know how to explain to a half-heart toddler. a hopeful big sister.  a prayerful mother. a watching world.

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Besides, God is the appointer of days. I sure don’t want to waste the abundant days of Annie’s life prematurely grieving her some day death. So until she is whole one day with that other half of her heart found in heaven,  I want to focus on the plenty and be content with what God continues to provide.

When You Realize Another Year is Gone

339 days ago we waited in a sterile checkup room. Annie innocently slammed empty cabinets and shuffled through doctor’s equipment. Matt and I complained about the wait and intermittently scrolled through newsfeeds.

The announcement Annie’s cardiologist made when he finally entered made us wish we had every single one of those waiting moments back.

Same: the triumphant entry of 2017 doesn’t feel very grand in our house. What it means to me is that we said goodbye to a year we weren’t supposed to get. Days we weren’t promised. Minutes we were advised against. And I’m not too happy about it.

In Annie’s New Year’s Eve interview, she named strawberries as her favorite food. “Joy to the World” is her favorite song. Target is her favorite store. See? I’ve done something right there. Her favorite thing do to do with Dad is “tackle he head.” Her favorite thing to do with Mom is “take a nap.”

Then we listed Annie’s accomplishments. In 2016

-Annie was honored as a survivor for the American Heart Association

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-turned another year older

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-potty trained

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-learned to swim

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-cheered on the Warriors and chewed sour straws

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-got her first car

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-and learned the messy family art of Christmas cookies

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Annie reported that the new thing she is excited to try in 2017 is going to school with Audrey. Going to gymnastics with Audrey. And not fighting each other…with Audrey. She does love her big sister!

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I’m excited about each of those too, as we watch our little girl grow up. So many new beginnings are ahead.So many moments we’ve begged God for so many times.

But as we ready for a year ahead, there’s a truth I can’t quite swallow. Each step down the road toward new beginnings is a walk simultaneously toward death.  It’s a day we had with Annie that we’ll never get back. Statistics show that one day, I’ll be abruptly left aching for more. 

On Thursday, Annie goes to her regularly scheduled January cardiology checkup. That will make a year since her 2016 January checkup. That day her doctor told us he didn’t know how many normal days we had left with her. 

We don’t know what Thursday’s appointment will find. We’re praying that

-her heart looks good

-she’ll be reinstated as a candidate for the 3rd surgery she needs

-we get to walk out of Children’s hospital and home to the normalcy of regular life

-we get another year of unexpected days with her.

The Day We Chose Life

The day the white-coated specialist announced, “I’m sorry. Something’s wrong with your baby’s heart. She probably won’t live to be born,” was the scariest day of my life. He gave us a choice in that office, one that he said would be easy.

Honestly, the doctor’s recommendation to “take care of her today” sounded terrifyingly inviting and horrifyingly easy. I whimpered to Matt, “I don’t want a baby like this.”

I didn’t feel brave covered in cold ultrasound goop, snotty nosed and red-eyed, sobbing that half of my unborn daughter’s heart was missing. But I learned that day that brave is doing the right thing when it doesn’t feel like it’s worth doing.

So, on this day, three years ago we chose life for Annie.

It hasn’t been easy. It hasn’t been cheap. It hasn’t been normal. It hasn’t been neat and tidy. And of course, saving Annie’s life hasn’t been all that convenient.

But it’s been worth it. Every single second of every single heartbeat has proclaimed to a watching world that there’s something more than convenient. There’s something more than logical. There’s something more than easy.

There’s the Creator who’s writing a beautiful story of redemption in the face of a little girl named Annie:

  • A 7-lb. bobblehead who was tangled up, carted off, and flown to Philly where her 5-day-old body endured a 4-hour open heart surgery 3 days before her projected due date.

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  • A smiling, cooing, growing, thriving 8-week-old whose heart was shockingly failing and was shipped back to Children’s Hospital of Philadelphia while we lived in the Ronald McDonald House for a month and begged God to save her life.

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  • A medically explainable 3-month-old miracle whose surgeon marveled with glistening eyes,“I’m sorry. There’s no explanation for why this is happening. No one is really sure why or how but on Annie’s pre-op tests her heart shows that the once-diminished function is now fully restored.” He chuckled again. “We planned to discuss her in surgery conference yesterday, but we got to skip over her name. Because of this miraculous improvement, this 2nd surgery poses no higher risks to her than any ‘healthy’ baby who undergoes it. Her survival chances of 60% are now 99%. I’ll have her out to you in no time.”

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  • A 2 1/2 year old who has gotten us accustomed to her giggle. Counting on her midnight milk calls. Listening quietly as she belts out lullabies in the backseat. Waiting for mealtime impersonations and wry humor she delivers with a bean up her nose and a sarcastic eye roll.

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  • A growing-up girl who has recently traded the endearing mumble of “sis-der” for a demanding “Aud-RAY!” and doesn’t need help to put her pants on or buckle her high heels.

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Obviously our plans for Annie’s life didn’t include multiple open heart surgeries, heart failure, living in another city, wondering if she’d live. But we’ve allowed the Lord to direct our steps. I’ll always be grateful that, by God’s grace, we’ve had the strength to fight for Annie’s life in the womb, with multiple surgeries, and with regular gratitude for the ordinary moments.

Each day we get to decide, “Do we want to insist to God that our child’s life be what we want it to be? Or are we okay that He has created her uniquely to fulfill His purpose?” God has grown us to the point of choosing, rather than to fight against His way with prayers for something different, to submit to Him and ask, “God, do something significant and show us how to make the most of every day we have with her.”