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.”

 

 

 

 

 

You’re not Alone!

One regular day your baby gets a rare, incompatible-with-life diagnosis. And all in one terrifying moment, you’re not like anyone else anymore.

Friday we were reminded that we aren’t alone. Annie isn’t the only cutie with a brave line sealing shut a broken 1/2 heart.

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Audrey isn’t the only sister facing truths and fears much too young.

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I’m not the only mom fighting and praying for my child while surrendering her days to her maker.

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Matt’s not even the only heart dad named Matt!

Sarah and I have been friends for a while. Her son Bowen is 6 and has HLHS just like Annie. So we’ve connected long distance…Sharing tears through phone calls. Research through phone calls. Studies through phone calls. Comparing doctor’s notes through phone calls. Praying over phone calls. Encouraging through phone calls. Loving through phone calls. Supporting with phone calls.

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The Hammitt family was in Little Rock on Friday and we finally got to meet in person! It’s so sacred to connect with other heart families. To see the courage and care in another heart mom’s eyes. To see the life and vibrancy of a heart patient 4 years ahead of Annie. To admit struggles that stick with us from the too much we’ve all seen.

It’s more than sacred though. After our goodbye hugs, Audrey recounted, “Momma, why do they have to live faraway? Louie is the only brother I’ve ever met whose heart isn’t broken like mine…but he has a brother with a broken heart like Annie!” It’s absolutely necessary to remind every one of us that there’s someone who’s been there. Someone who gets it. Someone else who begs God for tomorrow and trusts Him for today.

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If you’re just starting your terrifying journey, you’re not alone! I’d love to have you follow along with us here at Heart for Annie. You can also check out BowensHeart.com to follow the Hammitt family’s story. And reach out to WholeHearts.org for more resources. Sarah and her husband Matt started the Whole Hearts Foundation for this very reason: to build community and connection among heart families.