It’s Always Enough

I have to write this now while I believe it.  Because when it comes time to live it tomorrow morning at 5:45,  I’ll need to already have it etched in my soul.

When it comes time to board the plane waiting for us in the still dark night, I need to believe that I’ve had enough sleep.

When it comes time to hug my 5-year-old goodbye for who knows how long, I’ll need to know she’ll be loved enough while I’m gone.

When it comes time to kiss my husband farewell to live separate lives fighting for our daughter’s life, I’ll need to be reassured that we’re both doing enough to care for our family.

When it comes time to check into Annie’s CHOP hospital room tomorrow afternoon that is currently reserved for us, I’ll need to convince both of us that we’re brave enough to live there again.

When it comes time to listen to the doctors about Annie’s care, I need to know that they’re smart enough and caring enough to partner with me in advocating for her life.

It’s no secret that I regularly ask God for something else. For extra. For another. For more.

-More time as a family of 4 together.

-Better health for Annie.

-Extra joy so that she doesn’t know what’s happening to her failing body.

-Another chance to love her well and enjoy her for a too-short moment

-Even just one more day that she wakes up healthy enough, and I wake up brave enough, to do it all over again.

What I’ve been reminded of lately is that even though I want so much more than what I’m right now getting, what God gives is always enough.

He’s giving us enough courage to do what He’s calling us to do.  He’s giving us enough clarity to know which route to take. He’s giving us enough financial provision to travel across the country for Annie’s care. He’s giving us more days, more doctors, more possible solutions for more time with Annie.

Annie is sick. So sick that I don’t want tomorrow to ever come. I’m afraid of what the doctors will say when we check into the 6th floor. I’m afraid of the truth about what’s wrecking Annie’s body. I’m afraid of what feels like too few options we might have left.

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I want to stay here in the hallway eavesdropping on Audrey reading. I want to stay here in the hallway watching Annie sleep. But as cozy as it feels, it’s not safe here for Annie anymore. IMG_3334

So Annie’s button down pjs are zipped up tight, ready to be secured over IV lines tomorrow. My travel shampoo bottles are filled, ready to be perched on hospital bathtub edges. Our fuzzy slippers are squished down in, ready for snuggling and healing in the eerie safety of a Philadelphia hospital room.  IMG_3335

And in 12 short hours, tomorrow will surely come. But I can be certain that even though I feel so not ready, that what God gives will be enough.

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When You Feel Like Wasting It

In November, I tricked myself into believing that we just might actually be a normal family now.  After 4 exhausting years since Annie’s pregnancy and broken heart diagnosis, we had finally let our guard down.  It really didn’t take a lot of convincing. I had all the tangible evidence I needed.

Annie’s 3 surgeries were behind us. At her November checkup, her heart was functioning normally, a welcome shock to everyone. She was enjoying friends (and her favorite teacher!) IMG_1553and centers and lunches and naps at preschool two days a week. She was twirling and giggling and spinning and smiling in dance class every Monday afternoon.

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Collectively we began dreaming about our normal family’s future, voiced and hoped loudly by Audrey, “When I’m 17, Annie will be 15! And when I’m 83, Annie will be 81! And next year when I’m 6, Annie will be 4. See, you just take off 2 from my age and that’ll be Annie’s age for the rest of our lives! Right, Annie?”

How do you break it to yourself and your dreaming daughters that we were all wrong?

The first clue came when each morning Annie’s face didn’t look normal anymore. It was puffy and swollen just enough to make us wonder. That same week, Matt and I noted how Annie was outgrowing her shirts…but not really her pants. Maybe she snuck some holiday helpings we hadn’t noticed? We knew that was too wishful of a reason that her tummy tightened and rounded. To confirm our findings, I had her step on the scale. Five pounds might be fair for me during the month of November, but for an active 3-year-old, the weight gain proved my suspicions.

Something was going wrong in Annie’s body. Her local cardiologist agreed and asked to see her in clinic the next day. IMG_3115

Annie endured the usual tests: echocardiogram, EKG,  blood pressure, pulse ox. But we added an assessment that always tells the truth for Annie’s complex body: “a poke.” As expected, the results of Annie’s blood test told us the truth that we never wanted to hear.

Annie’s body is presenting with PLE symptoms, a rare but serious complication that can come as an effect of her Fontan physiology. The craziest part is that her once-failing heart is happier than ever. But now some other parts of her body are not responding well to the new way her body works since her August surgery.

The worst news of a PLE diagnosis is that it’s incurable. The best news of a PLE diagnosis is that her doctors in Philadelphia would like to do a little more investigating to see what might’ve set these symptoms off in Annie’s body. The symptoms came fast (1.5 weeks). The symptoms seem so soon after a successful surgery. But all of Annie’s care team agrees: the symptoms are very real and very concerning.

We are currently waiting to hear from the scheduling center at CHOP to confirm a date when they will perform a cardiac cath on Annie. The cath will allow her doctors to investigate and trouble shoot these symptoms. The investigation will help them decide if she actually needs an official PLE diagnosis or if there’s some type of fix for the sudden onset of her new symptoms.

Right now, we have a happy girl who’s smiling through the beginnings of regular days mixed with fact finding here in Little Rock. She’s proudly showing how to breeze through 24 hours of a holter monitor that assessed her heart rhythm. Right now, she doesn’t feel bad. She has no idea that anything off is happening inside of her. She’s resilient, brave Annie going to school, playing with friends, fighting with her sister.IMG_3135

But right now, as Annie’s mom, I know there are a lot of unknowns. A lot of what ifs. A lot of serious, scary maybes. Even some heartbreaking probablys. And I know that our normal family plans and expectancy were a lie I let myself believe.

Annie’s CHOP doctor assured me that we are in fact quite the better-than-normal family: staying together, loving each other, relentlessly advocating for the life of our child, believing when there’s not a lot left to believe in, passing on a faith that works to the next generation. While I certainly believe him, I think I feel tired of being known in all the hard ways. I’m ready for our family to be normal in some small, unnoticed ways.

We’d appreciate your prayers that we can keep believing that God’s plan for our family is the best plan for our family and that He’ll give us courage to live out what He’s called us to.

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.

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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

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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.

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

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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.

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-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.

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-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.

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-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!

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-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.

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-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!

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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

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.

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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.

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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.”

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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.

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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.

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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.”

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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.

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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.”

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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?

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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.

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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.

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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.