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.

When You Realize Another Year is Gone

339 days ago we waited in a sterile checkup room. Annie innocently slammed empty cabinets and shuffled through doctor’s equipment. Matt and I complained about the wait and intermittently scrolled through newsfeeds.

The announcement Annie’s cardiologist made when he finally entered made us wish we had every single one of those waiting moments back.

Same: the triumphant entry of 2017 doesn’t feel very grand in our house. What it means to me is that we said goodbye to a year we weren’t supposed to get. Days we weren’t promised. Minutes we were advised against. And I’m not too happy about it.

In Annie’s New Year’s Eve interview, she named strawberries as her favorite food. “Joy to the World” is her favorite song. Target is her favorite store. See? I’ve done something right there. Her favorite thing do to do with Dad is “tackle he head.” Her favorite thing to do with Mom is “take a nap.”

Then we listed Annie’s accomplishments. In 2016

-Annie was honored as a survivor for the American Heart Association

IMG_5212

-turned another year older

IMG_6314

-potty trained

img_4326

-learned to swim

fullsizerender-8

-cheered on the Warriors and chewed sour straws

14054388_857723374119_689420074601635644_o

-got her first car

14883634_10209120066977378_5619852953927467135_o

-and learned the messy family art of Christmas cookies

15355632_10209385164764657_7362272121468234508_n

Annie reported that the new thing she is excited to try in 2017 is going to school with Audrey. Going to gymnastics with Audrey. And not fighting each other…with Audrey. She does love her big sister!

img_9589

I’m excited about each of those too, as we watch our little girl grow up. So many new beginnings are ahead.So many moments we’ve begged God for so many times.

But as we ready for a year ahead, there’s a truth I can’t quite swallow. Each step down the road toward new beginnings is a walk simultaneously toward death.  It’s a day we had with Annie that we’ll never get back. Statistics show that one day, I’ll be abruptly left aching for more. 

On Thursday, Annie goes to her regularly scheduled January cardiology checkup. That will make a year since her 2016 January checkup. That day her doctor told us he didn’t know how many normal days we had left with her. 

We don’t know what Thursday’s appointment will find. We’re praying that

-her heart looks good

-she’ll be reinstated as a candidate for the 3rd surgery she needs

-we get to walk out of Children’s hospital and home to the normalcy of regular life

-we get another year of unexpected days with her.

How Long Does a Miracle Last?

I bit my nails, wrung my wrists, and chewed holes in both my cheeks while I wrapped my hungry 12-week-old tight for the 20-minute stroll. We walked slower that day, dragging each foot forward to the doom that waited ahead. It was 4am on the morning of Annie’s second open heart surgery. Squeezing her close, lips pressed to her wavy hair, I breathed in all that was Annie. I memorized the squint of her eyes and the warmth of her tiny head cradled under my neck.

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

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

I soon had the rare and unwanted privilege of administering the syringe of liquid sleep. She finally stopped fussing and sucking to rest peacefully in my arms. Her face matched the purple of the stiff hospital gown they’d dressed her in moments before. I kissed her as if it’d be my last and robotically walked the familiar halls to the surgeon’s office.

We’d been quoted the prognosis weeks before. Ours was the only surgeon still willing to take a chance on Annie. Even though his skill and precision tops all the rest, he only gave us a 60% chance of seeing her again. So when we met with him that morning, we expected somber, concise conversation.

He greeted us with firm handshakes and a smug grin that spread into a wry smile. He shared, “I can’t explain it. Annie’s heart function has recovered in the last few days. There’s no medical reason why. But she should be fine. I’m going to get to work reconstructing her heart. There’s a 99% chance she’ll be out to you in no time.”

99% chance of survival?

Heart failure recovered?

When?

How?

In 2 short hours, we met again. He reported that his assumptions were correct. Her heart function looked good. Everything went as planned. She was back in her ICU bed, chest sewn tight, breathing on her own, crying for us as she groggily came to. “Oh yeah, and one last thing,” he said, “we all witnessed a miracle today.”

Our first post-op look at Annie.

Our first post-op look at Annie.

A MIRACLE! When there’s not an explanation. When no one believes. When there’s hardly even a glimmer of hope. When it’s nothing any human could accomplish. What else could it be?

But a year later, I worry over next time. I’m mad that we have to evaluate options of when and where and why to administer the syringe again, to meet in the surgeon’s office again, to cry and kiss our last again.

I’ve forgotten to be thankful for the miracle of Annie. I’ve forgotten to live in the truth of God’s provision. I’ve forgotten to trust that provision for next time. I’ve already claimed that our miracle didn’t last long enough. So I need daily reminders!

Here is Annie in her Miracle Baby Tee by Tink and Key.

“Did you say, ‘Miracle’?!”

Who? Me?

“Who? Me!?”

To help us celebrate the one year anniversary of Annie’s miraculous surgery, Tink and Key is offering a special coupon code JUST FOR YOU, my readers! Check them out on instagram @tinkandkey, #miraclebaby, or online at tinkandkey.com. Be sure to enter coupon code SUMMERBLOG15 for your 25% discount!

Over time it seems that our once-in-a-lifetime miracles become everyday expectations. I want to stop asking, “Lord, what will you do for me next time?” and start finding joy in the miracle of Annie’s life every single day.

Is Annie Contagious?

“Is Annie contagious? Because my mom told me she’s sick…Is she gonna die soon?”

It wasn’t meant the way it sounds, but it was a sharp reminder of the curiosity that Annie is bound to face as she grows.  It’s hard to be labeled “sick” when she’s a taller, fatter, and faster talker, walker, lover than everyone else her age.

But for your own protection, I have to admit that Annie is certainly contagious.

Not one person yet has ever witnessed her plum lips split into a wide, open-mouthed smile and resisted smiling back.

11705118_10205676414282669_2337495685685208405_n

I can only hope that I catch a little bit of her free spirit darting in and out of the sprinklers, squealing loudly enough for her doctors in Philly to hear.

IMG_2569

Her courage is an example to many… and something for big sister to boss her about.  “Don’t you get up in that chair, Annie!”

IMG_2566

She’s quite the crowd pleaser with her silly antics. This itty bitty knows what’s funny and she’s always out to elicit a laugh.

IMG_2567

She’s friendly and engaging, already practicing good Southern etiquette of speaking to each person she encounters with a confident wave across the restaurant and a loud “Bawww”  and a blown kiss when someone goes on his way. But don’t worry, no germs travel from her kiss through the air to you, so you’re still safe!

IMG_2568

She lives each day so full of “ba-bees” (babies), “mil, mil” (milk), “momma, dadda, sisttt-der” (sister), “Pa” (her favorite uncle Paul), swimming, sliding, dancing, singing, coloring, play-dohing, hugging, kissing, building, learning, and growing that she’s easily brave enough–or at least tired enough–to sleep on her own in the toddler bed. Often still in her clothes! How is she SO BIG already? Big sister needs to catch some of that sleep-on-your-own courage!

IMG_2570

And, honestly, we could all just hope and pray that something about her hair’s amazing volume could be easily shared with us! Right? She didn’t get it from me!

IMG_2400IMG_2076

So yes, thankfully Annie is contagious.

Unfortunately, though, I don’t know if Annie will die soon. It sure doesn’t look like it to me and we currently have no reason to be concerned. It’s a fair question, though, he asked as he continued, “But she only has half of a heart!” And it’s true, someone shouldn’t live with only half of a heart. But thankfully by God’s provision (and oils, which are totally God’s practical provision) our Annie is doing it…and you’d be lucky to catch a little something from her!

Born with a Death Sentence

365 days ago my daughter started her fight for survival. Her first gasp for air was a harsh awakening that she was born into a world that her body wasn’t made for. She had already been labeled as “incompatible with life” outside of my cozy womb. Annie was projected to live 48 hours.

IMG_2646

But we chose intervention. We chose to try. We chose to hope.

IMG_1478

So we let them tangle her up, cart her off, and fly her to Philly where her 5-day-old body endured a 4-hour open heart surgery 3 days before her projected due date. We watched as she held her breath from searing pain. We held ours as the nurses crowded her bed, shook her body, and demanded, “Breathe, Annie! Breathe!”

Then they taught her how to eat. First through a tube, then on her momma. They also taught that momma how to not be afraid of her fragile baby, something I never expected to have to learn.

IMG_1582

We were both fast learners, so when Annie was 16 days old, we got to try real life together. It was harder than I thought but better than I thought, and of course, Audrey was a pro big sister.

Sissy lovin'

Then Annie’s heart failed. Real life screeched to a halt. We stuffed a duffle bag full of travel shampoo and clean underwear to carry on a medical jet so that we could live 31 days in the Philadelphia Ronald McDonald House. That’s when my heart failed. I knew that I was praying to a God who could heal, but all of my prayers left Annie bedridden and kept alive by an IV drip of heart failure meds. That wasn’t exactly what I was praying for.

20140615-111118-40278158.jpg

Then we got to come home for 3 short weeks, where we fought for Annie’s life with oral meds and oxygen canulas and frequent checkups. And finally we made the 1300 mile journey back, complete with a midnight call to CHOP’s cardiology emergency # from a Virginia hotel room, while one of us held a blue-faced, vomiting baby and the other begged for answers from the doctor still 500 miles away.  We made it to CHOP and handed Annie over for her second open heart surgery, a surgery we were told she had a 60% chance of surviving. The odds were in her favor!

Our first post-op look at Annie.

Our first post-op look at Annie.

She came home 5 days later to swim and swing and snuggle her sister. And to remind us that we aren’t promised tomorrow, so we live up today with gratitude and courage!

Annie is living it up in the swing!

Annie is living it up in the swing!

That’s what we’ve been doing ever since: living delicately, intentionally, gratefully.

Going to football games,

Dr. Arnold prayed the SWEETEST prayer, while Annie was recognized on the field!

Wearing matching dresses with the cousin,rehearsal dinner

Being a tired baby flower girl,

flower girl

Smiling,

photo (7)

Smiling,

smiling 1

And still smiling!

smiling 2

That smile is so irresistible that, by God’s grace, we’ve done a lot of that this year too. Obviously our plans for the first year of Annie’s life didn’t include multiple open heart surgeries, heart failure, living in another city, wondering if she’d live. But we’ve allowed the Lord to direct our steps. We’ve been inspired by another mom who asked, “Do we want to insist to God that our child’s life be what we want it to be? Or are we okay that He has created her uniquely to fulfill His purpose?” God has grown us to the point of choosing, rather than to fight against His way with prayers for something different, to submit to Him and ask, “God, do something significant and show us how to make the most of every day we have with her.”

Happy Birthday to our miracle baby Annie! Your heart and your fight are significant. God has already used you in ways I never could’ve imagined. What a joy to call you mine!

“Remember this: Had any other condition been better for you than the one in which you are, Divine Love would have put you there.” -Chalres Spurgeon

An Off Year

“This is YOUR year! Whatever YOU want can happen in 2015!” the ad promised. Thank goodness, I thought. I deserve a year for me. Because, as I confessed to friends recently, “last year sucked…big time.”

We spent 53 days in the hospital with Annie.

photo (5)

We lived in the Ronald McDonald House for 41 days.

photo (6)

We racked up almost $2 million in medical charges. We were separated from our other daughter for weeks on end. We watched our newborn endure pain that no adult should even fathom. During Annie’s interstage surgery period, she was bound to her oxygen canula and her pulse ox monitor and we all fought for her life by helping her get over a simple cold virus. We were told multiple times that she’d never make it, never be “normal,” never eat, never crawl…we’d never have what we had dreamed of. On top of that, we lost Matt’s dad in July. And we finally, officially lost an intact Briggs family with my parents’ September divorce.

I recently bargained with God, “I think it’s time for an off year. Okay?”

But you know what? If I’m honest in saying that my life is about Him and for His glory, instead of my comfort and gain, then last year didn’t suck. Are you kidding? What other year of my life have I walked so palpably close with Him?

In 2014 I literally felt Him sitting next to me in cold, lonely rooms whispering hope into my deaf ears and dead heart. I had a seat next to the powerful healer who did miracles in front of my very eyes. I had the privilege to share God’s heart for all people (even babies whose imperfections and inconveniences are identified before birth) by sharing the gospel with one of the most important and knowledgeable doctors in the US.  God gave us a story in the form of a precious, joy-filled, irresistible baby that put Him on display for thousands of onlookers. I proved His faithfulness to carry me through any situation and I experienced peace and comfort that goes beyond any human understanding.

I saw God. And I got to share those glimpses of His strong, loving, fatherly face with desperate families who shared the crowded ICU family rooms with me, who shared donated meals at tired tables after long, bedside days of similar bad news.

So I need to apologize to my friends for misrepresenting last year. A true account of last year is that it was perfect. God, by His grace, used a baby who no one wanted in ways I never could’ve imagined.

photo (7)

I think I’d be naive and foolish to stick with my request for an “off year.” Instead, I’m changing my prayer to a request for God to give me more reminders of Him. Like in Joshua 4, when Joshua set up stones to remind generations of God’s faithfulness.

I’m asking that every time I see Annie’s scar, every time Audrey asks me about it with her new-found curiosity, every time Annie does something she was never supposed to do (like CRAWL!!!!) I can remember, “He did this so that all the peoples of the earth might know that the hand of the Lord is powerful and so that you might always remember to fear the Lord” (Joshua 4:24).

God, I’ll take another one of Your years. Let 2015 make you more widely known.

Decisions, Decisions

On this day last year, we chose life for this happy, fun girl.photo (4)

We had to wait a week to see if her diagnosis would even be compatible with our choice. And honestly, the doctor’s recommendation sounded terrifyingly inviting and horrifyingly easy. I whimpered to Matt, “I don’t want a baby like this.”

How simple it seemed to cut the cord (literally) and count our losses. But we couldn’t. We wouldn’t. Because as logical as it sounded to others…even to us at times, it wasn’t right. Though we decided we were ready to get pregnant with Annie, we’d be embarrassingly naive if we thought her life was our choice. Her life wasn’t up to us and her life wasn’t for our pleasure or satisfaction either. So what if her life would make our life forever different than what we’d dreamed about in premarital counseling? Too bad if her life was an “inconvenience” to someone who wanted a worry-free reality. Reality doesn’t answer to dreams.

They kept saying we had time for “choices.” What they quietly withheld is that while we were free to choose, we were not free from the consequences of our choice. And so, what else would we choose than to cling to truth and to hope in the one who was holding Annie’s life in His hands, who did make Annie for His purpose.

The choice we had wasn’t to terminate Annie or not. The choice we had was to trust that God knew what He was doing, whether it felt like it or not. And of course, He did. And does. And will.

It hasn’t been easy. It hasn’t been cheap. It hasn’t been normal. It hasn’t been neat and tidy. In fact, Annie has a beautiful but jagged, light purple scar covering her chest that matches an ugly scar inside our hearts. And of course, saving Annie’s life hasn’t been all that convenient.

But it’s been worth it. every. single. second. of every. single. heartbeat. has proclaimed to a watching world that there’s something more than convenient. There’s something more than logical. There’s something more than easy.

There’s the Creator who’s writing a beautiful story of redemption in the face of our Annie. Just to continue proving that He is the author of this heartwarming story, it seems more than simply “conicidental” that on this one-year anniversary of choosing life, FamilyLife just so happens to be publishing an article about Annie tomorrow. Here’s the link: http://www.familylife.com/articles/topics/parenting/archived-content/miscellaneous/somethings-not-right-with-your-baby .

I love this story that God is telling. There’s no way I could make this stuff up!

hard things

Normal Nostalgia

We used to be normal. The kind of normal who fought over Matt getting home late from practice and fought over the rude way that I told him he was late. The kind of normal who saved him a hot plate of dinner anyway and shared all the day’s details over late-night whispers while one of us rocked our 17-month-old to sleep. The kind of normal who jotted two lists of names: one for a boy and one for a girl, dreaming about who the little Lane growing slowly in my womb would be. The kind of normal who only outwardly cared about hurting people and yet still claimed we knew what life was about. The kind of normal anyone is before normal collects in dust piles in a vacant home while you pay monthly rent to the Ronald McDonald House a thousand miles away.

We are not that kind of normal anymore. This year my newsfeed is filled with more than plexus, advocare, and pink-cheeked newborns. It’s a mangled mess of purple-lipped little ones wrapped in wires, dressed in bandages, laced with stitches, breathing through tubes. It’s filled with pleas for prayers or positive thoughts or warm vibes or ANYTHING that please might help save our baby in some way when another family gets news that can’t get worse in a day that can’t get longer.

This year, we are the kind of normal who doesn’t know if we have tomorrow. The kind of normal who knows what it means to believe in God when there’s nothing left to believe in. The kind of normal who wonders if our baby’s heart can endure her 20-minute carseat protest on the way home from Bible study. The kind of normal who honestly doesn’t know.

Even though our old normal is less than a year old, it seems as though it’s only something lived in a vague cousin to a memory. It’s so distant that it couldn’t possibly be a life we ever had. And our new normal is still so uncomfortable, I question how I’ve put the past so many miles away. While every day in some way I wish that I could erase all that’s happened, I’d really never want to go back to the day before the diagnosis.

Because that old normal didn’t have this sweet-spirited, smiling, bubbling, laughing, standing, kissing, snuggling, hugging baby in my arms.

10583035_734224152549_5169485079830603627_o

Those were arms that ached for normal, but didn’t know how much better Annie would be.

4 Ways to Help When Your Friend Gets the Dreaded Call

It’s time to fess up. I know I’m not the only one who’s faced a heart-wrenching, life-altering announcement in my life. In fact, at this very moment I’m writing, a friend sits in a waiting room aching to be mildly comforted by hourly updates as his wife’s brain surgery is underway.

We are not the only ones who’ve warmed those cold, cracked seats, huddled under blankets to keep our hearts from beating out of our chests during the grueling hours on opposite sides of life-or-death OR doors.  We are not the only ones who’ve questioned God, “Me? Our family? Are you sure? Because I’d rather not do this…but I will if this is Your way.” (See Matthew 26.)

So our friends are not the only ones who’ve been faced with how to walk with someone through a difficult, unwanted journey. If you are that someone’s friend, holding elbows to keep him on his feet through rickety, slippery steps; brushing back ragged hair from tear-stained eyes; and grasping white-knuckled fingers while she answers the phone call update with the other hand, you are important! Your friend needs you now more than ever! Here are a few things that kept me going through relentless hours fighting for Annie’s life.

1. Be there. Don’t think that it’s someone else’s job or assume your friend’s mom, sister, coworker, neighbor, community group leader, etc. will be there. They very well might be! But that doesn’t mean that you are not needed too. If someone in your life is going through intense difficulty, vow to be on the attendance list. Be willing to get into the mess that he may feel. Suffering isn’t contagious, but it’s much lighter shared.

2. Be silent. Closely related to #1, but not exactly the same. When you are present at your friend’s side, when you step into that ICU room, when you wait in the hospital lobby, say everything you want to say before you get there and only to yourself. Some people, afraid to say the wrong thing regarding the incidence, talk about the weather or the traffic or whatever. Even dry, unrelated conversation isn’t helpful. Silence can often bring the firmest presence and the loudest message. Remember that these are sacred, fragile times you’re sharing with your loved one. No need to ruin them with your story of your secretary’s cousin’s brother who faced something sort of similar that one time… And besides, when your friend is ready to talk you’ll already be listening.

3. Initiate serving your friend on your own. Honestly, people in such dire need living in survival mode don’t readily know how to communicate their needs. How can they remember that the yard isn’t getting mowed or even that their other child will need dinner later that evening? The capacity for normalcy isn’t always there. So instead of a general, “Let me know if you need anything,” however sincere, suggest an activity that might need doing. “Can I get groceries for you this week?” “I set up someone to mow your yard and I picked up your mail.” (I was shocked to be reminded that there was still mail being delivered to my mailbox thousands of miles away while I was in CICU nightmare land.) “I’ll be happy to login and pay your bills online.”

4. Let your friend feel whatever she feels without judgment. A very fitting quote says, “Don’t please yourself with thinking how piously you would act and submit to God in a plague, famine, or persecution. Rather, be intent upon the perfection of the present day, and be assured that the best way to show true zeal is to make little things the occasions of great piety.” If your friend is expressing disbelief, heartache, and transparent struggles, listen, affirm feelings, and pray. Do not try to preach away the faith journey that he might be on. I highly valued two friends who, after three weeks of incessant bad news regarding Annie where doctors finally told us to “enjoy today,” I could share my deep grief and disbelief with. I remember texting them, “I keep praying, ‘Lord, if you will, you can heal.’ But for some reason He won’t.” It wasn’t time for them to text me James 1:2-4 or Romans 8:28. It was time for them, as they fittingly did, to text back, “I don’t understand it either.”

I know this is a short list, but please understand how important it is. I know that for me, I wouldn’t have had the mental stamina to get up and keep going so many recent days without my friends and loved ones to lean on.

There is likely someone like that in your life. Please be the one he or she can count on. Please be willing to walk this road with that friend. Please be Jesus to that friend today, not with words or preaching or vain promises to pray. Be Jesus by being there to lavish unconditional love and service when it’s most needed.

And I finally have the capacity to say a HUGE thank you to the friends who have and still are carrying me through: my mom, my sister, Brandi, June, Erin, Emily V., Paige, Lida, our d-group, and our church and work communities. THANK YOU for loving us and stepping into our suffering hearts! I know what to write because of what you did!

When Is God Good?

If I could write a letter to me and send it back in time to myself circa 2013, to whoever I was pre- life-shattering news day…it’d sound a lot like a letter I might write to you, circa today, pre- life-shattering news in your life.

Know that when it comes, it’s going to be hard and awful and overwhelming and life-altering but also okay. But it’s not okay in an easy, glossy statement that many people who were afraid to step in and get messy painfully shared with us, “God is good and He will heal her. You don’t worry about a thing. It’ll all be just fine.”Or even better, “Wow! You must be so overjoyed that God is testing your faith this way! You know what James says about suffering!” I silently wondered how overjoyed they’d feel if they were told they might never meet their unborn baby and if they somehow happened to, untold nightmares awaited them. But it is okay because of a different difficult but comforting truth: “God is with you wherever you go.”

So I guess the biggest thing I’d write to my former self (and to you) is to start questioning today, “When is God good?” If you grew up in church, you know the recited answer: All the time, God is good! God is good, All the time! But what do you really believe? Before Annie’s diagnosis, I so naively and insensitively said things like, “God is so good! He gave us a healthy Audrey!” Or, “We are so blessed to have a healthy baby.” After Annie’s diagnosis, I had several people ask me if I still thought God was good, because honestly they weren’t sure anymore.  And if He was, then He surely wouldn’t have our family endure this.

Well, I still believe that He’s good. Because what makes Him good has nothing to do with Audrey’s heart health or Annie’s heart unhealth or any other circumstance in my life. What makes Him good is His nature. He is good because He sacrificed His only son on our behalf that we would have an opportunity to spend eternity with Him. That’s good enough, even if Annie’s heart is never whole here on this earth! Even if she doesn’t make it through tomorrow. Even if we get more life-shattering news next week.

It’s not easy. It’s not wanted. But God is still who He is, which means He’s still good–today, tomorrow, yesterday, and all those days that I had no idea we’d ever face the days we are living. But He knew. And that’s good enough for me.  

“God is so good. God is so good. God is so good. He’s so good to me.”