What We’ve Always Wanted

“Something is wrong with your baby’s heart,” he said.  “It won’t be worth it.”

Laying there watching my 18-week-old fetus kick and squirm on the theater size screen, I wondered if he meant she won’t be worth it. Certainly no stranger could tell me the value of my child’s life.

But in my silence, he pressed on. “Trust me. You don’t want to do this. It’ll be too hard. Too expensive. Too complicated. And she probably won’t live anyway.”

There he said it. She. We’d named her Annie the day before but he didn’t know it yet. So what he meant was Annie, growing wrongly in my womb, wouldn’t be worth all the inconvenience.

Thankfully that day we didn’t know all the “inconvenience” that her life would entail but we knew we still wanted her.

I whispered an argument, interrupted by broken sobs, that we were willing to take the chance.

He advised again, “I just don’t think she’s worth it. By Arkansas law you still have time. We can take care of this today and you can try again for a healthy baby that you want.”

He was right. I didn’t want Annie to have only half of a heart. I had never even heard of that, but I was smart enough to know that no one can live on half of a heart.

I was also  determined enough to know that Annie was still the baby we wanted.

family

At Annie’s gender reveal party!

That was 4 years ago, next week. Every year on November 18, we celebrate the anniversary of the day we chose life for Annie.

That was the day that I stopped being myself anymore. That was the day I found out that a mother means more than a nighttime comforter, diaper changer, and lullaby hummer. That was the day I turned into a fighter. I realized that day that I would have to defend and protect my child’s life in so many ways beyond being sure her car seat is buckled right.

That is the day that Matt and I committed to each other that together we would give Annie every chance at life that she could get.

That has looked like:

-Refusing another specialist’s recommendation for abortion two short weeks later.

-Leaving our 1-year-old with family to board a med flight to Philadelphia with our 4-day-old bobble head

IMG_1527

4-day-old, no scar Annie. The night before her first surgery when I finally got to hold her!

-Suffering the complete shock that our smiling 8-week-old was in severe heart failure. And again, flying to Philadelphia to live in the hospital and Ronald McDonald House for 31 days.

20140615-111118-40278158.jpg

-Handing our 3-month-old over for open heart surgery number 2 with only 60% chance of surviving

photo 1 (1)

Annie pre-op, wondering why I hadn’t fed her for the last 8 hours.

-Celebrating the miracle of healing when her surgeon announced Annie’s normal heart function on her pre-op heart echo and endured a seamless 5-day recovery.

20140804-100321-36201435.jpg

-Suffering complete shock again when January 2016, her cardiologist announced Annie’s regression into severe heart failure again. Worse than before. Adding to his tearful report: not knowing how much time we had left with our happy girl who was being honored as a survivor.

img_5224

IMG_5073

-Being denied the third stage surgery she needed because her heart was too sick. Being denied a new heart that she needed because her body was too well.

img_6071

-Celebrating life to the fullest for each day we have it with a once in a lifetime Make-A-Wish trip to Disney. What a total dream!

20117136_10211466282111290_4260556947857269675_o

-Having the doctors’ argument over how sick her heart still is and how severely it continues to fail, end in agreeing to the third stage surgery on August 1, 2017, to complete the Fontan physiology for Annie’s heart.

img_1867

-And finally yesterday witnessing another miracle at Annie’s regular cardiology checkup. Annie’s heart that was in severe failure on her post-op discharge echo on August 10, showed normal heart function on yesterday’s echo. Normal!  Her sweet doctor just said, “Wow.”  For Annie, the Fontan physiology has literally lurched her out of severe heart failure into a healthy, thriving girl who’s satting 95!

IMG_2848

 

So 4 years ago, when that specialist told us Annie would never live, we made the choice to make her life full for as long as it lasts. We had no idea what we were getting into. But we knew that life is always worth it. That love is always worth it, even when it’s terrifying and hard and uncertain.

We said yes to trusting God with a path we never expected that we didn’t know how to walk.  It’s been worth it.

Today she’s dreaming about what she wants to be when she grows up, and I’m finally dreaming that she might grow up! She’s speculating what kind of car she wants as a teenager, and I’m imagining her riding shotgun with Audrey on their way to high school! She’s giggling about funny grandma names that her grandkids might call her someday, and I’m believing that she might actually get to be a Mamie or Mawmaw…or at least the aunt who babysits Audrey’s baby (date night already scheduled by big sister).

Today I’m rejoicing in all the hard days that we never wanted because all along we’ve always wanted Annie.

“And I will lead the blind in a way that they do not know, in paths they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them.” -Isaiah 42:16

Advertisements

A Surgery Knife

“But, Mommy! How do they get to Annie’s heart?” An inquisitive big sister wanted to know the gory details hidden beneath Annie’s skin-colored patch.

IMG_1789

It had been hours since she stood proudly at Annie’s bedside. Smiling bravely. Seeming unscathed by the lifeless, towel-wrapped view of her sister. Audrey beamed as she meticulously sketched a giraffe, found Annie’s name poster, requested tape, and adhered markered paper love all over the walls of her sick sister’s hospital room.

IMG_1900

Now, back in the dark safety of a hotel room night, she had questions that needed answers. “Momma,” she pressed again and tapped my leg to see if I was listening. “How did Dr. Spray find Annie’s heart to work on it?”

I waited timidly, wondering what the appropriate five-year-old version of open heart surgery was. Before I could answer, she shouted, “SCISSORS?! Momma, was it scissors?”

“No, honey, no. First you need to know that Annie didn’t feel anything. Mommy gave Annie medicine this morning that made her go to sleep before her surgery. She slept soundly through the whole thing.”

IMG_1783

That tidy nonanswer wasn’t enough. “But sleep doesn’t open your heart for surgery,” she yelled.

“You’re right.” I conceded. “While Annie was asleep, Dr. Spray used a special surgery tool to open her chest.”

“SURGERY SCISSORS?!”she begged again.

“Not scissors, Audrey.” I finally caved. “There’s a special surgery tool kind of like a knife that the doctors used so that they could see Annie’s heart inside her chest.”

The answer was razor sharp. It cut Audrey to the core. She gasped, shrieked, and slunk to the ground clutching her own chest. She lay limp, sobbing for at least half an hour, never releasing the grip from over her heart.

I tried consoling her. It was no use. When her red splotchy face finally peeked up from the rough carpet, glaring eyes were glued on me.

“I know, honey. It’s so hard to think–”

She cut me off. “YOU. You LET them do that to Annie. You gave her to THEM! To CUT her!” She was right. And I certainly felt the weight of it all.

The truth that no five-year-old needs to hear is that I did in fact give Annie to them. And even though I had given her medicine that turned her quickly to drooling, snoring, dead weight in my arms, she actually somehow woke up as the comforting hands of a loving mother shifted her over to the cold hands of an invasive stranger. The minute I passed  her to the anesthesiologist, Annie thrashed wildly, kicking and clawing until she knocked the doctor’s glasses to the ground. “Momma! No, Momma!” she squawked, and Matt ushered me into the meeting room with Annie’s surgeon.

IMG_1784

Audrey wasn’t the only one blaming and protesting my counter intuitive act that day. How could a mother do that? It’s a question I’ve had to answer to myself on more than one occasion.

“I let them. Yes. I let them help her heart get better. I know it’s so hard to understand, but what the doctor did in surgery is to help Annie. She’ll be better once it’s healed.” Audrey collapsed into my arms, exhausted from the horror of it all and relieved that she could trust her mother again.

Annie’s carefully cut incision has healed now. So much so that I’ve started the eerie practice of nightly scar massage. Each night, just before slipping into princess pajamas, Annie reclines on Audrey’s bed–Audrey a sure witness to it all.

21731035_10156597520224829_5972150554791952383_n

I warm coconut oil between my palms and talk myself through the steps. Criss cross. Diagonal. Xs. I talk Annie through the no pain agreement. “This isn’t going to hurt. I promise. And if it does, tell me and I’ll stop.”

A couple nights ago, as I crissed and crossed a long pink line, Annie let a tiny giggle escape. Audrey, on alert, shot familiar glaring eyes up at me. “What’s wrong, Annie?” she asked protectively. I continued, my thumbs pulling ridged skin loose.

Annie burst into a full belly laugh, squirming side to side, bouncing my thumbs with each breath. “Nothing, Auddie. It tickles!!! My line tickles and tickles.”

IMG_2467

Audrey’s glare turned into a confused grin. “But they cut you, Annie. Don’t you remember? With a sharp surgery knife. But Momma was right. You’re all better. You don’t hurt anymore. Now you can laugh again.”

Now we can laugh again. Now we can dance again. Now we can love again. Thanks to this steady handed surgery who sliced Annie’s chest to recraft her broken heart, now we can live again. IMG_1787

The scar that Annie proudly reveals to her K3 classmates, as Audrey reports it, is a mark of victory, a mark of miracle, no longer a mark of pain.

Psalm 86:10- “For you are great and do marvelous deeds. You alone are God.”

 

 

 

The Ugly Truth

Annie paraded around the ICU

-chained to a rolling IV tower,

-face leashed to rubber airflow,

-directed by an overeager five-year-old,

-prodded by an overaggressive nurse,

-filmed by an excited aunt,

-hand in hand with an anxious mommy

-moaning and crying with each tiny wobble.

IMG_1826

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

IMG_1943

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

Until I remembered.

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

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

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

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

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

IMG_1930

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

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

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

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

IMG_2039

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

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

IMG_2037

 

When you Can’t Go Back

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

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

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

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


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

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

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

When it Might Be the Last Time

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

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

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


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

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

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


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

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

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

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

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

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

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

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

Third Time’s the Charm

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

IMG_7382

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

IMG_8727

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

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

IMG_9100

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

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

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

photo 4 (1)

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

-the same miracle

-from the same reliable God

-on the same day

-from the same doctors

-in the same room

-at the same center filled with hope.

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

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

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

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

IMG_8103

Stay

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

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

IMG_0991

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

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

IMG_0997

 

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

IMG_0989

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

Stay, routine tuck ins.

Stay, sparkling eyes.

Stay, giggling girls and swinging Daddy.

Stay, poolside picnics.

IMG_0921

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

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

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

perfect peace

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