I Named Her Anyway

I remember the day I decided not to love Annie. I didn’t want my heart broken by a broken hearted baby growing wrongly in my womb.

I named her that day anyway.

A baby should have a name, I reasoned. That name defined the life of a baby I hadn’t even felt move yet. I’d only seen her long legs kick, kick, kicking away on a screen in black and white while the technician searched for the other half of her heart.

It’s good to define a life the day before you have to fight for it. It’s also good that we wanted Annie so many days before someone told us we shouldn’t anymore.

“Yes, her heart is all wrong. See there on the screen?” He was asking the wrong person. Certainly, I had an untrained eye, but to a hopeful, expectant mother everything about her forming fetus feels just exactly right.

“You don’t have to do this, Mrs. Lane. And I’m positive you won’t want to. I’m not even sure your daughter will live to be born. You don’t want to put yourself through that. I’d advise taking care of it today. It’s very private and safe. We can do an abortion right here in this office.”

Hot tears stung my cheeks. Was he talking to me? About Annie? His words drowned in my delight of watching my baby girl flip and flop on the television mounted on the wall in front of me.

“I can see you need some time to consider it,” he pressed. “You don’t have to decide today. But I can assure you it’s your best option. And no one will fault you for it.”

I didn’t need time to decide. I needed time to catch my breath and find my voice. He waited impatiently and handed me a box of Kleenex.

“No. No. I want to keep her!” My words were chopped by gut wrenching sobs. “I want her. I want her.” I don’t know if I was telling Annie’s doctor or Annie’s mother, but we both understood.

Contrary to popular medical belief, choosing life for Annie has been our best option. And more than a few loudly inquiring minds have faulted us for it.

Each of those recommenders and inquirers were right. I didn’t want to do this. I didn’t have to do this. It’s absolutely been life’s greatest challenge but equally humble honor to be Annie’s mom.

To be the mother loving a child who everyone knows will die too soon.

To be the mother comforting a child who knows all the truth of her condition.

To be the mother nodding and smiling, passionately thanking a discharge team’s recurrent announcement. “We’ll give her 6-8 weeks,” they say with smug, forced grins. “Enjoy your trip home.” And we were free for another day to wait for Annie to fail.

And somehow since we chose life five years ago today — while we all wait for Annie to fail– we just keep living!

I picture those 20-week-old fetus hands covering her face when I hold her thumb tightly to clean the red blot from a third-try finger prick.

I remember those skinny, unborn legs when I pretreat pink leggings discolored with brown sludged knee stains from digging for worms on a pre-k playground.

I remember the doctor’s warnings of Annie’s shortened life expectancy when she darts the entire length of the soccer field chasing her ball to the net.

Every three months when I’m scared to death in some cardiology waiting room, I close my eyes and picture preborn Annie that day. And I remember that we made the right choice to keep her, to want her, to love her. I’m going to keep making that choice every day I get to.

Now I Know

I used to think I’d be thankful if one day Annie woke up with a regular heart. I used to think I’d be thankful if one day her doctors revoked their prescription of 6 daily medicines. I used to think I’d be thankful if she didn’t need regular pokes or phlebotomy care. I used to think I’d be thankful if one day we realized it had all been a very bad dream.

I’m probably right about what I used to think I’d be thankful for. But lately I’m rejoicing in ways I never expected to.

Lately I’m thankful that, for the first time ever, I successfully administered Annie’s finger prick INR check at home. I was calm! Annie was cooperative. She even offered up her plump thumb on her own and then pumped it herself to produce a ladybug-sized glob. What a talented 4-year-old.

She smiled and unwrapped a striped band-aid while we both watched the screen for the result. “Look, Momma! Two point five. That means I’m good.” Can’t complain that she’s reading her own results too.

Now I know I’m thankful that a weekly blood check can be done bent over a kitchen table instead of strapped into a lab chair.

Lately I’m thankful that there’s an anticoagulation medicine that keeps Annie’s life-saving stents open. I was heartbroken last week to find out that even though it stabilizes her pressures to help sustain her life, Coumadin also causes “cold intolerance.” Says so right there on the box (that I’ve never seen because I always pick this up in a neatly repackaged pharmacy bottle).

How can we have recently moved to a cold climate to be near her life-saving pediatric care center…and simultaneously moved to a cold climate that her body cannot tolerate? Something’s gotta give!

I felt again like I’d only be thankful if she didn’t need this medicine anymore! Until I realized I’d be thankful for the kindness of a weathered school community who recognized Annie’s incompatibility with the cold and responded with bundles of size 4/5 warm winter layers. Twice last week Annie bubbled over about a school day in the backseat while unzipping her backpack. “Mrs. Horton got me these things at Target, Mom!” and “Somebody sent this bag to my classroom for me. I don’t know them though! Maybe you do?”

Now I know I’m thankful that there are solutions and insider secrets for keeping bodies and hearts warm in Pennsylvania.

Lately I’m thankful that there’s a new place we’re calling home. We’re missing our family, our church friends, our school community, and our old workplace settings. Some days when I hear about holiday parties or family get togethers, I’m certain that we are missing out on the good life. Until I stop looking outside and start looking inside to realize that we eat dinner together as a family every single night now. We’re not missing Matt on the other side of the practice field anymore. We’re watching Audrey giggle and grow with a church bestie, sitting in a second row pew every Sunday. We’re watching Annie memorize scripture and learn letters and practice monkey bars at school every day.

Now I know I’m thankful that we’re getting things we always wanted in a place we never knew to wait for them.

Some nights we ask each other if we’d still decide to pack up and go home if we could. While the resilience of the yes has faded, the answer hasn’t changed. And maybe it never will. But we know now that we’re thankful that God can make home wherever He puts us. And our quaint white stucco house is transforming into a cozy home full of new traditions and the same faith that brought us all this way.

The Gift of Bad News

“But, Momma,” she stopped her swinging, planted her feet in the grass, and shot up at me with a reluctant complaint in her eyes. “I want to do the things that Audrey, Greg, and Adam can do. But I can’t! Because I’m the only one with half heart! Nobody else in all of anybody’s families we know has half heart like me.”

I can’t argue that. She has no half-heart neighbors. No half-heart siblings. No half-heart classmates. No half-heart friends. She is, in fact, the only one who she knows with half heart.

What a glorious gift!

Most people like to forget a problemmed past and move on to a promising future. Easy enough. But on Sunday our pastor preached on salvation. Ephesians chapter 2 urges the people to remember that at birth they were separated from Christ. That they were born into depravity. That there was nothing they could do to save themselves. That they were “without hope.” That’s a lot of bad news.

What a glorious gift to be given the full bad news!

So I want Annie to know and remember that in the womb she was recommended terminable. That at birth she was heartbroken and incompatible with life. That she was born into death without intervention. That twice after her first lifesaving surgery, there was nothing the surgeon could do until we waited out her failing heart to see if she’d become operable for the second and then the third surgery. That in January she was pronounced fluid overloaded, PLE ridden,  and prescribed a medically managed future.

What a glorious gift to be given the full diagnoses, the pervasive bad news, the conclusive grim!

So the Ephesians who were once without hope, but then were brought near to God and reconciled to him in Christ Jesus, know the excitement of salvation. They know the merciful gift of the full diagnosis so that they could seek treatment through the cross.

So Annie, who was twice recommended not worth fighting for, who was thrice handed over with death being a considerable risk, who was given a 6-8 week medical response plan to see if her new prescriptions would manage her deteriorating body, should full well know the gift of bedridden days. Because then she can know the gift of a sun kissed face, fall wind in her hair, humming a tune as she idly pumps 4-year-old long legs.

“But. Mom-MA!” she pressed again, impatient with my silence. “I said I’m the only half heart. Did you hear me?!”

“Annie, it’s a gift.” She listened stiffly. “Being the only half heart means you get it. Means God has made you in a way that you know Him so well. That others see Him in everything about you. That you see beauty in regular moments when others see bored. Annie, today wasn’t guaranteed. And because you’re a half heart, you fully know it. What a glorious gift!”

“So I’m a gift?” She wasn’t sure. But I am.

Some people have asked me if I think God wants us to be happy, and if I can be happy as the mother to a child who could die someday way before we’re ready. Some other people have asked me if God wants Annie to be happy, and if she can be happy as she ages knowing the ongoing care and prognosis she faces.  I don’t necessarily think that God is overly concerned about mine or Annie’s (or humankind’s) happiness. (Nor do I think He wants us unhappy. I don’t think happiness is the end point.) And Annie usually seems pretty happy to me!

I do think that He is concerned about our effectiveness in knowing Him and making Him known during the days of life He gives us. I have personally proven that there is great joy in that. And the joy of the Lord is a great strength, a perfect gift, for when happiness in life’s circumstances doesn’t come through. When we can’t change a diagnosis or a prognosis or a checkup marked in red on the calendar for October 19.

No. Happiness isn’t the ultimate gift. But remembering what once was, recounting the acts of a saving God, counting His faithfulness that’s waiting in eternity and playing out on earth today…those are glorious gifts.

 

 

Today I Was Brave

“Hold her arm, Mom. Tighter please! Can you get her other hand too?”

My least favorite motherhood duty to date is physically restraining my child to force her to endure a procedure that everyone in the room knows will hurt.

I zoned out over breakfast a couple hours earlier. I knew the task was coming and the dread that caught in my throat wouldn’t allow me to swallow the rest of my oatmeal. Annie had no idea. She happily sang across the table from me and scooped more yogurt into her sweet mouth during lyrical lulls.

Yesterday’s INR check to ensure that Annie’s blood clotting time is slowed to a point that inhibits clots from forming inside her is an unwelcome routine for her medically-managed body. I know she’s tired of that routine.

Me and another nurse won the battle of Annie’s strong, stiff arm while the lab tech pumped then pierced her vein with the needle. She filled the vile with liquid red while Annie’s tears fell into my lap. Her protesting screams were heard down the hall into the waiting room. Once the nurse got the blood she needed, Annie chose two stickers. One said: No Tears Today. The other: Today I was brave. I smiled reassuringly and told Annie how well she did and how brave she was.

I hurried Annie out to the waiting room and placed her into Matt’s hands. I ran for the door, trying to get ahead of my family so that my back was to them before I broke the No Tears Today rule. I shuffled to the car with quick feet so two little girls couldn’t hear the sobs of a brave mom who felt weary of the medically-managed routine.

We’ve had two days of medical life since we moved to Philly 33 days ago for medical reasons.

The other 31 days have been filled with

finding new favorite restaurants,

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playing babies in the living room,

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swimming at the Y,

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filling sand buckets at the Delaware shore,

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snacking on train rides,

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checking out a new school campus,

holding her own in a front yard wrestling match.

Those are the days that life is made of. Those are the moments we think on and look toward while we sit in cold sterile lab chairs together, wait on holter monitor results, and schedule follow up appointments.

On all those days, we celebrate every small victory. Like Annie’s encouraging report from her July cardiology visit.

Though being diagnosed with PLE during our inpatient stay in December/January, she is currently not exhibiting any symptoms. Even her blood work indicates that her PLE might be “not currently existent.” Her doctor admitted to being perplexed with the report. He said that it’s hard for CHOP doctors, who are the ones who have researched and determined that PLE does not in fact stop existing in a body once it has taken residence therein, to quantify that in Annie’s body the findings indicate that her PLE is gone. But he recommended that our family and the medical community at large can be encouraged that textbooks and research don’t know everything. Clinical presentation is king and right now its decree is stability and health for Annie. We’ll take it!

And we’ll enjoy the next 30 days that rest in between the next mother/nurse poke restraint battle.

Did You Say it For Me, Momma?

After over 10,000 surgeries and more than 4 decades of placing teeny tiny heartsick babies carefully back into the arms of their hopesick mothers, Annie’s world renowned heart surgeon retired last month.

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When Annie was first diagnosed during my pregnancy, I became the research mother. One set of videos I found online eerily explained the scholastic details of each of her 3 palliative operations. The doctors in the videos weren’t afraid. They talked as if they had a plan that they knew how to execute. That’s what a mother like me was looking for and a baby like Annie needed.

When Annie and I arrived at CHOP when she was 4 days old, we were both prepped for her surgery with Dr. Spray, looming a mere 12 hours later.  The resident came to consent me: “We know how to help your baby. She’ll go on bypass. We’ll cool her way down…essentially, ma’am, it’ll be like she’s drowning in an icy lake. But that will protect all of her organs while she’s on bypass. We’ll keep her alive through the machine. He’ll do the first stage reconstruction on her heart in about 27 minutes. She’ll be pretty sick after. But then, if it goes like it should, she’ll get better. If it goes like it really should, you’ll walk out of here holding her in a couple of weeks. But sometimes it doesn’t go like it should. You need to know you might not ever get her back. Especially on such a fragile newborn patient, the risk of death is certainly there. Can you sign here please?”

I nodded and tried to steady my shaking hand enough for the ink to scrawl my name.

“And one more thing, Mom, Dr. Spray’s the best. I guess that’s why you came. You made the right choice.”

We made the right choice. We made the very difficult choice to leave our 1-year-old daughter behind, not knowing when we’d see her again. To leave family. To leave friends. To leave everything familiar during the most terrifying time in our life. To go to a new place to choose to hope and fight for life for Annie.

We’ve done that countless other times over the past 4 years:

  • a  31-day heart failure hospital stay at 8 weeks old

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  • another open heart surgery at 3 months old

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  • an 18-month-old developmental checkup

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  • more heart failure at 20 months old plus a heart cath to measure to severity of it

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  • another open heart surgery at 3 years old

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  • a 12-day hospital stint to kick off 2018 trying to medically manage a new PLE diagnosis for our little girl with her eyes swollen shut

We’ve never regretted going so far to provide the right care for Annie. But we’ve never been blind to the repercussions that being a medically fragile family, too often separated, has had on all 4 of us. But today that ends!

Tonight we board a one-way flight from Little Rock to Philadelphia so that we can be an always together family. So that Annie’s primary care can be at CHOP. So that we can make new friends and find a new way of life that is choosing the best life for all of us, not just Annie.

Matt showed Annie a picture of her surgeon, letting her know that on our upcoming visits he won’t be there.  She said she’d never seen that guy before…thanks to effective anesthesia!

She wanted to know why Matt and I think he’s so important. I explained to her how she was asleep every time but he worked on her heart so carefully. Then he would come out to meet with us and report: “She did great. I was able to make the necessary repairs. All went as it should have. She’ll be waking up crying for you again in just a few hours, so you’ll want to be at her bedside.”

Annie smiled in awe. “Did you say thank you, Momma?! I mean for me. Since I was asleep and too tired to say it.”

That’s probably the phrase I’ve said most to Dr. Spray. I’m not sure much else was ever needed to the man who time and time again gave us more and more days with Annie.

But that brings me to today, as I ready my family to set off for our new land. I want to be sure to say thank you for the glorious mundane moments that we wildly hoped for every time we handed Annie to Dr. Spray.

Thank you to the best siblings I could ever ask for. We hear comments regularly about how shocking it is how much we like to be together. I guess we’ve taken it as normal all these years.

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Thank you to our bestie exact match family. How could we ever quantify the value of every park, pool, hand holding, sunrise exercising, football talking, girl parenting moment over the last 6 years? IMG_7111

Thank you to our church family who made it so easy to find a spot to fit and a community to do life with. Annie is wondering who she’ll talk to at school next year if it’s not Kennedy, Rebecca, and Graham. IMG_7472

Thank you to our parents who have excelled at grandparenting. The girls already have plans for your visits! IMG_7463

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Thank you to our friends who have walked parenthood with us from the literal beginning, budding friendship over doula recommendations and blooming friendship through shared tears and prayers around kitchen islands and playroom toy piles.

Thank you to everyone in Little Rock who has made our life the best! We can’t imagine anything better. But because we know the joy of the good life we’ll be able to piece it together again…this time with cold winters, public transportation, and Wawa.

Tomorrow morning we’ll wake up happy and hopeful in our new city!

 

Finding Home

In October, I chatted with the girls in the car. “Heaven is real,” I said.

“Yes and so is hell,” Audrey added, thanks to Immanuel Baptist Church lessons.

“And the Bible tells us that saying yes to Jesus is the only way to spend forever in heaven with God when we die,” I continued.

Annie, eavesdropping on big sister’s heaven conversation, piped up from the backseat, “Or the soldiers can carry you.” I was intrigued as Annie unveiled her real life account of: “Soldiers. Man soldiers.”

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“Oh, in army camouflage clothes with guns?” I interjected.

Annoyed at my misknowledge, she bantered, “Not THAT kind of soldier!!! Soldiers with sparkling swords. And arms and legs and wings.”

As I pressed Annie for answers, the truth from a 3-year-old’s mouth had me sobbing behind the steering wheel. “What color are the soldiers?” I had to know!

“Heaven’s soldiers are bright, Momma! So bright I could hardly look at them.”

“What do the soldiers do?” I wondered.

“The soldiers carry you into heaven and carry you back when you’re ready. Like they did with me.”

And she went on to question the bulldozer working on the side of the road. Back to regular 3-year-old conversation. Back to the temporal giving me only the slightest glimpse of the eternal reality that exists in fullness while we worry about this physical world.

Annie has never been pronounced dead or needed resuscitation as many of her heart warrior friends have. She has never “coded.” But Annie’s heart has been stopped during two of her three open heart surgeries. Her cardiologist, a dear believer too, says that wouldn’t be classified as medically without life…but as Annie’s account proves, spiritual reality is much more true and defining than what we understand in this life.

I remained speculating about when she visited heaven. Then in April, Annie, again from the backseat, described it to me. Listening to KLove, “In Christ Alone” played on our drive to pick up Audrey from school.

Annie announced, “Momma, this song makes me think of my surgery when I was a baby.”

I didn’t know Annie remembered her surgery as a baby. She was 5 days old at her first surgery and 3 months old at her second. She’s never indicated memories of any of those early accounts. I’ve actually been comforted by the fact that though the memories are etched forever in our minds, science wouldn’t suggest that she has recollection of them.

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I asked her why she was reminded of surgery on a healthy sunny day driving around Little Rock.

“Because this song is what the power in heaven feels like,” she explained. “And that’s the kids clapping in heaven because they’re happy when the soldiers carry you home.”

Annie’s favorite song is Home by Chris Tomlin. Annie is right about home.

But to me lately home means nothing and everything all at once. Because as I’ve grown, home has changed.

Growing up, home tasted like foil packs drizzled with A1 and wavy lays dipped deep in French onion dip.

Home sounded like a little brother practicing drums way too loudly in his upstairs bedroom and an early rising dad stirring two spoons of sugar into his every morning Folgers.

Home looked like piles of various-sized kids’ shoes littering the backdoor entrance.

Home smelled like backyard honeysuckle and fresh baked cowchip cookies.

Home felt like four brothers and three sisters comfortably knocking knees and elbows around a dinner table, squished on couches, huddled over two controllers of the Moses Nintendo game bought with our combined grandparent Christmas money.

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My grown up home Matt and I have made tastes like Chick-Fil-A breakfasts on Saturdays, weeknight crockpot dinners from a working mom’s hands, and banana chocolate chip muffins.

Home sounds like two giggling girls squabbling over the baby carrier and singing along to KLove in the backseat.

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Home looks like Piggie and blanket sprawled on a denim couch and handtraced China maps and Barbie sketches taped across bedroom walls.

Home smells like nighttime oils and day-old milk discovered under a lullaby rocking chair.

Home feels like a place of fullness we never know if we’ll get to keep, especially during the intermittent lonely spurts of hospitalized separation.

Home used to be called 3 Robyn Lane.

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But not since April 3. When we drove by the other day to feel it once more, we were sad to find the new owners dismantled our shutters, painted the front door, and are letting the front shrubbery grow wild. Nothing looks or feels like home anymore.

Annie is teaching me that

-Home isn’t a place; it’s a presence…of our Good Father, God. Home is anywhere we are in the middle of His will.

-Home isn’t a place; it’s a face of our Redeemer, shining so brilliantly we can barely squint our eyes open to sneak a glimpse of the glory.

-Home isn’t a palace; it’s a people singing never ending praises, giving eternal honor to our Creator.

-Home isn’t on earth; it’s in heaven.

So I’m dreaming about the reality that home tastes like complete satisfaction.

Home sounds like all the kids clapping in heaven.

Home looks like bright winged soldiers with sparkling swords carrying babies in.

Home smells like fresh cleansed souls, emitting the aroma of pure and forgiven.

Home feels like power and a God-written destiny every moment from “life’s first cry to final breath.”

And I’m not afraid of our next earthly home in Malvern, Pennsylvania, starting July 16:  a cute white house that comes as part of Matt’s compensation as Dean of Students for The Phelps School. We’ve barely experienced it in more than a rental car drive by. (Now you know as much about it as we do!)

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I’m learning that home is something that only God provides. And I’ll know all along as I make this a comfortable place for our family to thrive that I have a sweet girl to remind me of our real, eternal home and hope in heaven.

From Every Mom Who Has Ever Needed a Nurse to Help Her Love Her Child

For that moment during labor when I didn’t think I could push anymore…thank you for reminding me it’d be worth it in just a few short minutes when I had my tiny baby in my arms.

For that scary moment after delivery when they said my baby was sick and ripped her from my grip…thank you for brushing sweaty, salty labor hair out of my eyes and crying with me.

For the moment when my 8-minute old baby needed oxygen and sticky leads and a bundle of wires…thank you for caring gently, warmly, carefully for my baby when I couldn’t.

For the moment when I was afraid to hold my child because of all the monitors, bandages, and tubes…thank you for reminding me that a mother’s arms are just right and helping me find a perch for the entanglements so I could finally feel my baby breathing against my chest.

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For the day I felt like my baby would only ever be a patient, never a real child…thank you for decorating a personalized name sign and proudly hanging it above her isolette.

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For the moment it was time to teach my baby how to eat with her 11-day-old lips…thank you for unhooking the NG tube and placing a warm breastmilk bottle into my hand. “Go ahead,” you nodded. “You know how to do this. I’ll be right here to help you.”

For the day I thought I’d suffocate in the hospital hallways and my older daughter needed me too…thank you for forcing me to go out for a bit.

For the moment when I couldn’t enjoy my day out missing my hospitalized baby too badly and surprised you with an early return…thank you for being found in the rocking chair, humming lullabies to my babe cradled in your arms.

For the long hospital nights filled with beeping monitors and midnight checks that don’t afford the exhausted parent any sleep…thank you for sending me to the Ronald McDonald House for a real bed and answering my check-in questions over the phone at 4am.

For that one summer month that we lived inpatient…thanks for putting my Starbucks order on your coffee run list and treating me like a friend instead of another hospital mom.

For the procedure day when my daughter had to lay flat for 6 hours…thank you for bringing a bucket full of Disney movies, snacks, books, and a new pillow case to keep her entertained all afternoon.

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For when my daughter could finally get out of bed to walk but didn’t want to…thank you for setting up a craft station 20 long-feeling steps away for her tired feet but close enough to entice her with sparkly nail polish and pottery.

For that moment when I sat sobbing in the hallway covered in the “scusting” medicine my 3-year-old spewed back in my face…thank you for hugging me, offering a warm cloth, and telling me you’d administer the next dose.

For the day when discharge came and the pharmacy sent up a suitcase full of meds…thank you for scrawling down the daily schedule on a notecard, complete with check boxes for me and reward stickers for my daughter.

For the first time I left her in church nursery, equally hopeful and worried that she’d be treated like every other kid…thank you for just so happening to be the one volunteering in her age class that year.

For the time I had a breakdown in the corner of my kitchen because I couldn’t get enough blood for her finger prick…thank you for interrupting your family duties and walking across the street to help your neighbor out. I thought you could do it because you are a seasoned pricker. Instead, you encouraged me that it’s just because it would not be easy to do on your own child. “Call me anytime,” you offered. “You’re doing a great job at all this.” I’m surprised but I believed you, and I really needed to that day.

For every second of your obvious and unseen careful care….thank you. Because of all of those moments, I get to enjoy regular life with my child.

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