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 complimentary 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.

 

 

 

 

 

 

 

 

 

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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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The Day We Met

The day we met I thought a day like today would never come…but I let myself hope it would.

The day we met I was afraid of you…but I prayed you’d never be afraid of yourself.

The day we met I didn’t know if God would ever give me what I thought was enough of you…but I tried soaking in every second He was giving us together anyway.

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The day we met I had no idea how to care for someone like you…but I vowed to be a diligent, though frightened, student.

The day we met lasted much too short and I wasn’t sure I’d ever see you again…but I began dreaming about you anyway.

The day we met my arms ached empty…but my heart grew full.

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The day we met I had visions of you on a day like today: dancing with your friends, giggling loudly, proudly loving who you are…but I knew the scientific facts so I didn’t let myself get too carried away.

The day we met I thought eventually we might get to a place that was easy. The years are still hard with no reprieve in sight but loving you has made life better for all of us.

The day we met I thought your life would be worth it, even when I wasn’t sure how it’d all work out…but now there’s proof of the present and eternal value in every single one of your sacred days.

This weekend, when I heard the harmony around the room of a birthday choir of family, friends, and fancy 4-year-old girls, I realized that so much I hoped for on the day we met continues to come true.

You’re living life, my sweet Annie. You’re changing lives, my brave Annie. All God’s power and provision is shining through you, my precious girl.

Happy 4th Birthday, my perfectly formed one. We face much uncertainty ahead– faltering quality and length of days–but all your moments are undoubtedly meant to be.

When We Get to Philadelphia

“Is something bad going to happen to me when we get to Philadelphia?” she almost whispered the question. It’s like if she said it too loud the horror of it all might really come true.

“No, honey, no. Not this time,” I assured her. How could such a small girl carry the weight of so much? I wondered what else she feared behind those old soul eyes.

She pressed again, “But when we land are you taking me to the hospital? In Philadelphia you always take me to the hospital. I don’t want any pokes this time, Momma. I don’t want my eyes and tummy to be fat and sick again this time. ”

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I don’t think either of us believed that we really weren’t going there this time to be sick, to get pokes, to be cut open, to live in the ICU and beg for life for another day until we landed in Philadelphia and headed to our hotel in the opposite direction from CHOP.

The first morning there the four of us followed suit with our Saturday breakfast tradition. Except with no Chick-fil-a in sight, we chose a restaurant across the street from our hotel parking lot.  Mine and Matt’s coffee mugs brimmed with warm brew. The girls’ plates dusted sugary sweetness atop warm French toast. We laughed. We talked. We hoped. We dreamed.

We finally believed that on this trip to Philadelphia we didn’t have to be afraid. Audrey confirmed our family’s general ease when she, usually quite feisty and resistant to change, suggested, “I have a good idea! Can this restaurant be our new Saturday tradition when we move?”

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But as our house hunting adventure exhausted us and we actually went about picking out a new life in a faraway place, Annie’s question loomed.

A place with blizzards in the middle of March isn’t exactly top ranked in my desirable locales. Pennsylvania isn’t really on my list of can’t wait to live there. Giving up living our best life to start over in an unfamiliar place isn’t really how I would’ve planned it.

I kept silently asking God, “Is something bad going to happen to us when we get to Philadelphia?”

I asked God to confirm His plans for us. To confirm His goodness to us. To confirm His voice of direction that I’ve clearly heard from Him too many times to keep denying (and too many times to keep asking for reconfirmation but Hey Philly isn’t an easy yes in my book!).

I love when God answers. And I love when He doesn’t wait to answer. And when He doesn’t halfway answer.  The first house we looked at on our tour had a shocking God message hanging on the basement office wall.

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The chances of that house being for sale during our single weekend of house hunting in that city on that day in the order that we saw it with Annie’s exact insanely rare congenital heart defect plastered across it are completely impossible. But not to God. Not to the one who is orchestrating His perfect plan for our best life whether we feel like it or not.

As we narrowed our home tour list to a single perfect option for us, still I continued to ask, “Is something bad going to happen to us when we get to Philadelphia?” Essentially I was demanding to know: Are you really going to drag us here and leave us all alone???

I love when God answers. And I love when He doesn’t wait to answer. And when He doesn’t halfway answer.

The next morning I wrestled awake much before my weary family. I couldn’t rest. I needed to demand some reconfirmation that we were really going to do this. That God was really going to pull all this off.

In the dark hotel room with a half-hearted snorer snuggled into my back, I opened my devotion for Monday’s reading.

“Abram had no idea what God had in store for him. His mind couldn’t imagine what God was going to do. Yet he packed up his camels, his turbans, and what have you, loaded up the family and headed toward a strange land. What made him do it? His faith. His faith that God wasn’t going to do him wrong. His faith that God wasn’t going to lead him to a place with no provision for him and his family. His faith in God’s promises.”

Read through sobbing eyes:

“Tracy had no idea what God had in store for her. Her mind couldn’t imagine what God was going to do. Yet she packed up her kitchen, her closet, and what have you, loaded up the family and headed toward a strange land. What made her do it? Her faith. Her faith that God wasn’t going to do her wrong. Her faith that God wasn’t going to lead her to a place with no provision for her and her family. Her faith in God’s promises.”

I think what I’m seeing is that the steps toward God’s will are the hardest because they require me to leave the familiar, to give up the hope that I can pull this whole thing off because it’s so obvious that the task is so enormous that I most certainly can’t.

And let’s remember the honest reality: We’re moving 10 miles away from CHOP because our child is SICK! So again I demanded, “Is something bad going to happen to us when we get to Philadelphia?” Isn’t that the whole point? To be down the road from the hospital when Annie needs emergent care? When Annie isn’t stable anymore? When Annie’s eye and tummy get fat and sick again?

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So the most logical answer to whether or not something bad will happen when we get to Philadelphia is a resounding YES!

While that might be a viable answer, it isn’t the biblical truth. By faith I can follow a God who keeps His promises. By faith I can trust a God who’s good. By faith I can move my family into a new city, a new home, a new community,  a new climate, a new school, a new church, a new reality and trust that what God has for us there is provision.

I don’t know if it means that Annie won’t get sick; in fact, science says she will. Science says she is. I don’t know if it means we’ll make new best friends and get along with everyone we meet. Accents and sub-cultural norms suggest that it’ll be hard to find our fit. I don’t know if it means we’ll have health and wealth and abundant happiness.  In fact, the process of relocation has put a steady leak in our bank account.

But I know that it means I can hope. I can be expectant for God’s continued provision for our family. For His continued glory and story of redemption to be written in the face of my newly flexible 5-year-old bubbling about her upstairs bedroom. To be beaming in the face of my incompatible with life little girl  who celebrates turning 4 with a Barbie party next week.  To be marked in the wrinkled foreheads and dark circled eyes of parents who stayed up way too late praying to hear the clear direction from a good God just one more time.

I’m not sure where life is headed but I know God has a plan. I know that I’m brave enough to follow it.

So we’ll make this sweet house our home in the end of May. And take excited steps toward a God who continues to write this story, and that makes it good.

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When You’re Glad You Didn’t Know What You Got Yourself Into

When Matt asked me to marry him, it’s a really good thing he didn’t say, “So, Trace. I was thinking. In 9 years do you want to leave everyone we know and love to move across the country? It’ll be fun. We’ll just pack up and make our life in a foreign place because our child, who races her big sister across the backyard and beats her friends to the top of the slide, is actually really sick. So what do you think? Want to do that with me?”

I know for certain that I would’ve declared a loud and definitive NO! That would’ve sounded completely crazy.

Lucky for all of us, instead, when Matt asked me to marry him, he said something to the effect of, “Tracy, I don’t know what the future holds for us. I know I want to find out what it holds with you. I can’t guarantee much about our unknown future. But I can promise you this: I’ll keep loving God so that I can keep loving you. I want to do that with you by my side because I think we can grow in God better together. I can promise you that instead of demanding what I want in life, I’ll ask God what He has for our life.  I think that with your encouragement of me and your commitment to Him too that we’ll have the courage to choose His ways instead of ours no matter what He calls us to.”

Now THAT sounds romantic and surrendered. Brave and authentic. That is something I could say yes to. And, well, I really loved that sparkly ring in his hand.

During our first year of marriage, we went on a small group retreat where our leaders instructed us to select a verse for our marriage. A verse that we felt defined our togetherness and that we could use as a foundation in the years ahead to anchor ourselves to God and each other.

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Matt and I chose Ephesians 2:10: For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them (ESV).

I love how The Message version puts it too: He creates each of us by Christ Jesus to join him in the work he does, the good work he has gotten ready for us to do, work we had better be doing.

I’m very glad that when we were 25 and 27 we had no idea what those specific works God was preparing us for would look like.  I’m also glad that on our wedding day Matt and I vowed to God and each other, in front of many of you, that we would not think of our life as our own. We vowed that we would surrender ourselves to God for His ultimate purposes and glory in our marriage and through our family.

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It sounded so easy on May 9, 2009. It feels much harder today.

Because today there’s a lock box on my front door so that any realtor can let any family in to see if they want to make their home in our beloved Little Rock house. And today I’m scrolling through images of MLS listings from my realtor friend in the suburbs west of Philly.

Audrey is asking to have her 6th birthday party  in our backyard, on our big deck, on her swing set…like she always has.

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I’m having to explain to her that by the end of May, someone else will be partying on that deck, swinging in her swing.  And we’ll be trying to sprout some intentional love for the charm and character of an 80-year-old colonial with no garage, but plenty of off-street parking, in Delaware County Pennsylvania, 30 short minutes away from Annie’s cardiology team at CHOP.

On a recent car ride home from school Audrey voiced the unified wonderings of us all. “Will we live in Philadelphia forever?”

I had to admit the truth. “I thought we’d live in Little Rock forever, Auddie. So I’m really not sure,” I told her.

Then I thought back to how Matt and I began our family with his proposal that March that feels so long ago. I knew exactly what to say, “I don’t know where we’ll live for our whole lives. But God does. I can’t promise that we’ll live in Philadelphia forever or in Little Rock forever. But Daddy and me can promise you this: We will go wherever God tells us to go because He knows what’s best for our family. We will say yes to whatever God calls us to. We will trust Him and obey Him every time because He knows what He’s doing.”

Annie has accepted it. She told Matt, “Momma told us we’ll make new friends and we’ll like our new school. I can pick which bedroom I want. And if we need to, we can get a new swing set for our new backyard. And that it’s okay because y’all will always do what God says.”

I’m so thankful that in all the newness that awaits us when we relocate in early summer, our same big, faithful God is already there with His new mercies day by day that will give us the strength to walk in Jesus Christ a little baby step at a time.

And hey if you know of anybody who needs a super cute house in Roberts and Pinnacle View school districts, send them our way!

The Day I Felt Bad For Choosing Life

These past two weeks, I’ve been really struggling with the decision we made 4 years ago when that specialist told us Annie would never live.

“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-sized 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 a life we should say yes for.

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 medical flight to Philadelphia with our 4-day-old bobble head.

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-Suffering the complete shock that our smiling 8-week-old was in severe heart failure. And again, flying to Philadelphia to live in the cardiac ICU 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 ever getting her back alive.

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

-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 that month.

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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 most recently enduring another unbearable complication. Annie’s body isn’t happy with her new Fontan physiology. Just this month, she has been diagnosed with PLE, an incurable disease that ensures the days that Annie can live with her broken birth heart are fleeting.

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It’s hard to admit it, but…

-watching Annie endure countless “pokes” for blood draws and IV placements

-holding her down to shove medicine in her mouth that she spits back in my face

-knowing that her life is now guaranteed to be daily marked by her heart deficiency

…I actually confessed to a friend that I feel bad for choosing life for Annie. For fighting so hard and effectively for this difficult life that she’ll bear.

My friend reminded me of a huge truth that I had so easily forgotten.

God chose life for Annie way before I ever did. God’s purposes for Annie’s life make this version of her life and health the only way that Annie can live her best life. A heart healthy Annie wouldn’t be better for her…or me. God has given Annie all that she needs to fulfill the eternal purposes that He created her life for.

God made the right choice. And when I chose to obey Him by choosing life for Annie, so did I.

That day 4 years ago, 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.

Even in the past hardship that we have faced and in the upcoming hardship that Annie will face, we are daily proving Psalm 138:8,

“Lord, you will show that I was right to trust you.
Lord, your faithful love continues forever.
You have done so much for us, so don’t stop now.”

Today Annie’s dreaming about what she wants to be when she grows up, and I’m finally dreaming that she might grow up! 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. All along we’ve agreed that our lives and our children’s lives are for God to be glorified in all things. And we continue to be amazed at how big and intimate God can show off in a life-loving little girl who fully understands the joy of every day she gets.

“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

 

It’ll Never Happen to Me

I slipped soundlessly off the edge of the hospital bed, careful not to wake Annie. It was still early. And we needed her to sleep peacefully through every possible minute of her no food allowed morning. In about an hour, the team would come to take her back for her cardiac cath procedure.

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I needed to shower and think before I got up the courage to hand her over. I robotically went through my routine. Mindlessly brushing my teeth in the tiny sterile hospital bathroom mirror, I caught a glimpse of myself.

I gasped and dropped my toothbrush into the sink. I saw someone in the mirror I wasn’t expecting to see. Glasses still perched, wet hair hanging. I saw me.

I wasn’t seeing the reflection of a internet heart mom friend. I wasn’t encouraging someone else who was about to hand her baby over. I was looking right at me.

You think by now I’d understand that all of this isn’t happening to someone else. Some other family. You think by now I’d be way past believing it’ll never be us. Never be our child. You think by now I’d know it’s me. Accept that it’s my life. But it’s not all that easy to swallow right now.

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If this is really me–and the reflection in the foggy glass proved it is–then it’s my daughter about to undergo another life-threatening procedure. Then it’s my daughter who has to be held down by me and two nurses just to choke down her regular meds. It’s my daughter who has hospital life PTSD and throws thrashing trauma fits randomly late some nights, unable to be soothed by a caring, but exhausted mother.

Mostly, I don’t want to believe it’s really me because if it’s really me, then it’s really Annie. And it’s hard to admit the test result’s proof that Annie is facing a new complex, incurable diagnosis. Annie has officially been diagnosed with a rare complication of her new heart physiology.

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For the last 12 days, living in Children’s Hospital of Philadelphia, Annie has been medically described each morning as: “Annie, our 3-year-old hypoplast, post Fontan, newly complicated by PLE.” Every morning I want to kick and scream and tell them that can’t be my Annie. Every morning the blood test result readings, the new medicine prescriptions, the 6-8 week plans for waiting on her body to respond all explain my Annie.

We’ve agreed to partner with Annie’s care team in Philadelphia to medically manage her new disease for as long as possible. We all know that the medical management of her Protein Losing Enteropathy (PLE) comes with a loudly ticking clock. We don’t know when the clock stops, but her body will decide. It might tick for a number of years, wound by a new recreated fenestration, stents in her pulmonary arteries, high doses of anticoagulation and diuretic pharmaceutical concoctions. It might tick for a few months, stopped short by high pressures, significant protein loss, and lymphatic fluid overload.

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All in the same moment, when I can’t even catch my breath because of the sadness for my daughter over the grueling amount of pokes, tests, uncertainties, and awful realities she inevitably faces, I catch my face stuck with a wide, bright grin. I’m Annie’s mom!

-Annie, who upon checking into her 6th floor room for an unexpected hospital stay, carefully carved her own name on a princess sticker paper. Then whispered, “Momma, write brave and strong above my name!”

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-Annie who charms the doctors with her old soul and understanding beyond years.

-Annie who has fight and determination.

-Annie whose strong mind convinces her weak body that it’s okay.

-Annie who  coaches herself to stay up all night to avoid sunrise pokes by yelling to her eyes, “No, no, no!” every time they threaten to close in the midnight darkness.

-Annie whose will to live has outwitted every prognosis.

-Annie whose quality of life, vibrancy, and giggle offers hope to new moms wheelchairing around the CVICU hours after delivery.

We’ve been teaching Annie, even more in the last two weeks, how God made her exactly the way He knew she needed to be made. A little easy going. A lot feisty. Not very sensitive. A mind over matter kind of girl. We’ve been teaching her to rely on Him when it feels too scary to take another step. “Fear not, for I am with you,” she’ll quote her Bible verse. We’ve been agreeing with her that she is strong and brave…not on her own, but because God can make her that way.

She admitted that sometimes she feels brave and sometimes she doesn’t want to be brave anymore. She took the words right out of my mouth. Every day now I’m scared to be Annie’s mom. I’m scared that I don’t have what it takes. That I don’t know how to comfort her. That I won’t cut up her 8 bedtime meds right. That I won’t make the best decicions regarding her delicate care. Most days lately I just don’t really want to be brave anymore.

Her bedtime book this week is about Franklin going to the hospital. Dr. Bear reminds him that “Brave is doing what you have to do no matter how scared you feel.” So, no matter how scared I feel, I’m clinging to the truth that I’m teaching Annie. We don’t have to fear. We can be strong and courageous because God is with us. And He’s working for our good.

Tonight I’m especially glad to be Annie’s mom, because Annie and her mom are free after another ICU stay. Every time I walk into the hospital with Annie, I’m never certain I’m going to walk out with her. Tonight, I’m thankful to be the mom walking out with my child.

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We have so many complicated and confusing and complex days behind us and up ahead. I’m thankful that because of those, both Annie and her mom understand the gift of every ordinary moment.