I’m Scared She’ll Live

The year we expected Annie to arrive,  medical journals reported that someone with hypoplastic left heart syndrome had a 70% chance of making it to their first birthday . The diagnosis also gave someone roughly a 30% chance of making it to their fifth birthday.

Last Sunday, Annie sat at the kitchen table mindlessly eating her sausage biscuit. When Matt handed her the spoon of morning meds hidden in a glob of garlic hummus, she broke into tears.

Morning meds are nothing new. Scoops of hummus are nothing new. And we’ve even had plenty of tears shed over four innocent little tablets.

That day was different though. For the first time her tears didn’t bear defiance. Instead the tears were sad, broken-hearted drops.

I sat on the stool next to hers and put my arm around her back. “What’s wrong?” I asked. No answer. She continued to cry and pull away.

I pressed again. “What’s the matter? This is how you always take your medi.”

Scared

“But this time I’m scared,” she finally admitted. “I’m just scared!”

“That it will hurt your tummy?”  the most common unpleasantry associated with her dosage. She shook her head again and again.

She leaned in toward me. Tears still falling. “I’m just scared, okay? Scared!”

Her warmth against my side plus her brave admission of fear made my tears come. I wanted to say: I’m scared too. That they’ll upset your stomach. That you’ll have to take them for your whole entire life. That they won’t work. That they’ll bring other complications we don’t want to deal with.

I sat holding her for a while. “I know,” is all I could whisper. We both had wet cheeks and scared hearts. There was still medicine to take…but we had each other.

Then I realized that exactly what we were afraid of was something to celebrate. We were afraid that she’ll have to take her medicine for her whole entire life. That’s not scary if it’s simply one more dose.

That’s only scary if it’s foreseeable years and decades that we anticipate a medically managed life. It’s only hard to fathom when the end of taking medicine is not even in sight. It’s only frightening to picture Annie living on her own someday, hoping that she remembers to swallow the pills before her 8am class.

It’s scary because we think that she’ll LIVE!

Celebrating Fear

Saturday we celebrated her fifth birthday with 12 friends squished around a Chick-fil-A party table. Annie told me that she couldn’t eat her nuggets because the table was too crowded with people who love her.

She decided instead to make another lap around the play place: up the steps, through the tunnel, down the slide in a train of five-year-old giggling girls. Never panting. Never breathless. Smiling through every single one of the hundreds of rounds of play.

Annie continues to outlive every prognosis she’s ever received. We moved to Philly thinking she’d be sick. Thinking she’d need more regular care. Thinking her days might become more numbered.

Instead she’s living up life crowded tightly by people who love her. Scared that her regular days are so numerous ahead that doesn’t want to be bothered by the annoying routine of morning medicine.

Keep living, my girl. Keep fighting, dear one. Keep facing your fears and counting your days ahead! I’ll be right here beside you afraid of and fighting for each one.

Happy 5th Birthday, Annie.

And to our friends whose lives felt much too short, we remember: Oliver, Jenna Jean, Tahlia, Alayna, Boston, Hayden, Stephen. And many more. We’ll always remember.

Annie’s Special Disability

Disability has always seemed like a ridiculous idiom to me.  An invented word for the regular people of the world who are uncomfortable by overt differences. It’s a label for the people who no one knows what to call.  For when the typical person doesn’t  know if they should awkwardly stare or hurriedly look away to hide their own discomforts.

It’s a nicety that doesn’t really sound very nice at all to me. Especially when Audrey recently used it to describe Annie.

Riding home from school, Audrey announced, “Annie has a disability. But that’s okay.” Nothing about that disclosure or definition felt okay at all to me, the disabled child’s mother.

Annie, unphased, wanted to know what a “dability” was and where she had it. Almost as if she’d just been told she was the secret owner of some unknown treasure hiding in her closet.

“It’s in your heart, Annie. Because your heart is sick. But it’s not contagious because you were born with it.”

Annie still didn’t get it. And I still wasn’t ready to respond to the new category in our home. I silently wondered where Audrey heard the term.

“Annie!” Audrey grew exasperated. “You know. Half your heart is missing. Remember?! That means you don’t have the same ability to do things that other people have. Like sometimes you can’t keep up with me running. Or sometimes you’re out of breath. And you have to take medicine. So that’s a disability.”

Through the rear view mirror, I saw Annie’s pensive eyes. I held my breath to see how she’d respond.

“Oh yeah. But my ‘dability’ means I’m way braver than anyone who doesn’t have one. I like having a ‘dability’ then. I don’t care if you’re faster, Auddie. I’m stronger.”

To my surprise, Audrey beamed. “I thought you’d say that, Annie. Disability means you don’t have the things other people have. You have something better.”

That night Audrey wanted to read the Joni Eareckson Tada story out of her missionary biography book. She remembered reading it before. And wanted Annie to see someone else who had a disability that made them stronger and braver.

A few days later, it was time for Annie’s weekly finger prick. She and I gathered the supplies from the kitchen cabinet. Annie loaded the pricking pen with the needle. Then inserted the test strip carefully into the meter.

Distracted by the preparation tasks and talking myself out of momentary anxiety, I hadn’t realized that Matt and Audrey joined us at the kitchen table. Matt placed his hand on Annie’s back to comfort her. She gave a wry smile and said, “I don’t need you, Daddy.”

She’s pretty accustomed to independently offering up her own pointer finger and plumping it for the right-sized glob. She wrapped a Barbie bandage safely around the prick and smiled at her audience. All done it seemed.

Until Matt had a suggestion, “Do my finger, Trace, so I can see what it’s like.” Annie looked up in shock! I wasn’t sure Matt would be the cooperative patient that his 4-year-old is. But I pricked his pointer finger anyway. “Ouch!” he said. Annie giggled. Matt wasn’t kidding.

The onlooking sister got the same idea. “Do mine, Momma! I wanna know too.” I have firm historical evidence that proves how terrible of a patient Audrey is so I really wasn’t up for this idea.

Audrey persisted. Annie coached her through. “First set out your band-aid. Then turn your wrist like this so your finger is free. Be very still. Mom won’t hurt you.”

I administered the prick and Audrey shrieked. She shot at me with angry eyes. “Ouch! Mom! That really hurts!”

Then she turned to Annie. “I’m sorry, Annie. Every week?!”

And there was a knowing. A sharing. A care that can’t happen before you’ve felt the prick. Before you’ve known the special ability that accompanies the details of a disability.

And there was a sister, a family standing behind our disabled daughter agreeing with her that what she has is something better.

Could It Be True?

I didn’t even want to look at her. Less than two weeks ago, we received shocking news that it seemed her PLE was gone. Or at least at bay for a long, bright foreseeable future. Decades even without those three ugly letters echoing haunting in our heads.

Wednesday morning that healthful future changed.

January 4, she visited her cardiologist for a checkup. While we waited patiently in the clinic room, we watched cement trucks out the window pouring ground for more floors of a new medical care center. We remembered that view from years back, when that very spot was Potbelly’s sandwich shop. We’d walk across for sandwiches and a little sunlight during our month-long stay while Annie lay sick in her ICU bed.

Audrey’s routine order was day-old bread. What she didn’t eat, she tore into crumbs to draw a hungry pigeon crowd. She called them chickens.

I remember those lunches I chewed numbly, trying to silence the morning rounds report in my mind: “She’s not getting better. We’re still trying. But we’re not really sure.” I leaned in and put my cheek next to Annie’s almost 5-year-old cheek, hugging her from behind as she window watched all the street walkers.  I’m so thankful they kept trying.

A knock at the door interrupted my reminiscing. Annie’s kind doctor entered with a smile. Annie matched puzzle shapes and worked a sticker book to distract herself from his care.

It had been an entire year and four days to be exact since Annie was discharged from CHOP for her PLE diagnosis and treatment in January 2018. On every one of those 369 days, her body was asymptomatic of its new disease. Her blood maintained normal Albumin levels all on its own. Her sweet face stayed slim with cheeks pulled tight. Her once round, fluid-filled belly stayed trim. Her weight remained stable.

She’s happy. She loves preschool. She’s learning to read. She never wins the races down sidewalks with her friends, but she tries. We kept reporting these details to each other. I finally asked the obvious question.

“Does she still have PLE?”

“She had PLE,” her doctor replied cautiously. “I don’t see anything in her body right now that would say she actively has it today. We’ve been collectively waiting for Annie to fail, but trying to give her time not to. I think at this point we can change our mindset to watching her thrive, with cautious realism anchored in a lot of hope and support in the back of our minds.”

We continued in talking about medication changes of options that will be ready in about a decade. Our previous conversations had the same time frame, but had sounded differently. “We’d likely only be able to manage the PLE, at most, for about a decade.” The prognosis was changing.

Could it be true? We all wanted it to be. And it seemed symptomatically viable. We all four split a chocolate dessert that night in celebration. We felt like we could breathe again.

Until last Wednesday.

Annie stumbled to the breakfast table, complaining about the crust in her eyes. She was diagnosed with pink eye the day before. “Momma, I need my drops!” she mumbled. I turned to look at her. What I saw took everything in me to hide my shock and give her a smile.

Her right eye was almost swollen shut. Her right cheek puffed out round. Her lips were full and plump.

A delicate, difficult art of being a mother like this is smiling and nodding into your child’s eyes when you feel like gasping and crying instead. I pulled her close so I wouldn’t have to look anymore and whispered that I’d get the drops. I wished with everything in me that a swollen face was a pink eye symptom. Even WebMD knows it’s not, but I put some hope in administering those antibiotic eye drops anyway.

I also snapped a picture and emailed her cardiologist. He was equally disheartened and “concerned but not alarmed.” He is hoping–we’re all hoping–that it is just associated with the cold virus plus pink eye. That her body is just responding to a sickness in a way that is within normal range for someone with her heart physiology.

Then he ordered her back on diuretics that she just came off of, plus doubled the dose. I wonder if a delicate, difficult art of being a doctor like this is affirming, nodding, and gently prescribing when a scared mother calls you crying. Thankfully both of Annie’s cardiologists have this down.

Her doctor wrote an official note to ground my weekend plans and has checked in with me throughout the last several days. Annie has seemed like her normal self some. The eye drops cleared her eye infection. The oils cleared her viral infection. She’s still tired though.

Today I have the honor and responsibility of driving her to Labquest, holding her down, wiping her tears, shhhhshing her cries, and watching a vile fill with her blood. All the while I’ll be praying that vile is FULL of Albumin. That her body is still somehow able to sustain a normal level, even though she woke up with mildly puffy eyelids this morning.

Right now we are considering three theories of Annie’s recent swelling.

1- Her cold virus just made her body respond that way for a short time. And once she’s completely over it, her body will go back to slim, trim, PLE-less Annie.

2- We miscommunicated about a medicine for her to stop. One that doctors theorize helps manage the body’s inflammatory response to PLE. So she had been off of that for 2 weeks, but restarted it yesterday. What if that was it?

3- She still has PLE. More than that, her body is right now (mildly) sick from the disease. No one wants to say it out loud, so I’ll type it instead. We kind of all think this theory is the most reasonable right now. Could it be true?

But the Albumin levels in her blood test results will tell the truth that no one wants to hear.

 

 

 

 

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.