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

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-turned another year older

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-potty trained

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-learned to swim

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-cheered on the Warriors and chewed sour straws

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-got her first car

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-and learned the messy family art of Christmas cookies

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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!

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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.

Not as Easy as You’d Think

When the perinatologist suggested terminating Annie when I was 18 weeks and 6 days pregnant with “a baby who might never live and was guaranteed to have significant complications,” I immediately choked out a quiet but firm, “No, that won’t be an option for us.” Even though my audible answer was an automatic refusal, the silent reasoning that screamed in my head wasn’t convinced that it wasn’t at least an option to be considered.

Sure, I knew what was right, what was moral, what I should do and say. But I’ve learned that knowing the correct response doesn’t silence the fears. It was one of those times where I’m glad I decided what I’d do before I even got into the situation– you know the ones your parents made you role play as a teenager, the ones where you practice making the right decision in the light before it’s too hard to see the right answer hiding behind the dark.

It was a time where I felt like God’s promises weren’t matching up with what He was asking me to obey. Kind of like Abraham being asked to sacrifice Isaac. God had promised Abraham that his descendants would be as numerous as the stars…and then God told Abraham to kill his only son as a sacrifice. I’m sure Abraham was wondering how in the world God was going to make recompense of that situation to make good on His promise. But, as God always is, He was serious about asking Abraham to obey and He was also faithful in keeping His promise by providing an animal as sacrifice instead.

God asked me to obey Him that day (and in the few weeks’ window that followed where Arkansas law would still legally permit a termination) and trust that He is the giver and taker of life. I know that I would have never chosen to end Annie’s life while she was in the womb. But I can’t say that there weren’t days that it sounded like such an easy option. It seemed so easy to silence my fears on my own. To take measures into my own hands so I could know and prepare myself for the outcome. To be the one in control so at least I could be sure how it would all unfold. To give in to my fears of the what ifs of Annie’s life to come. To be swamped in post-op pictures of 5-day-old babies and convince myself that neither Annie or I should have to live through that.

And yes, I would’ve missed this:

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But I also would’ve missed this:

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I’m seeing that when God asks for my obedience, He knows I’m afraid. He knows I’m scoffing inside my head thinking there’s no way it’s all going to come together.

But I’m thankful that there is no fear in love, so that I can live each day unafraid of what it holds and what tomorrow will bring, because God is lovingly writing the story of my life and Annie’s life. I can trust Him when He asks me to obey, and I’ll put my hope in His promises that He always keeps.

The Diagnosis

We’ve been meeting with specialists, one who suggested terminating the pregnancy of our precious girl. I explained through tears that that would never be an option for us, no matter the results of the multitude of tests he conducted. We knew from the first “something isn’t right” that we would carry Annie and enjoy her life as long as the Lord would let us. Life and death are in the authority of the Creator’s hands, and we trust His numbering of ours and Annie’s days.

The specialist’s test confirmed a lot of good news: Annie’s heart defect is an isolated event. She has no chromosomal abnormalities or any other conditions that would indicate other problems. So it looks like surgery after she’s born could likely correct her heart problem. We rejoiced with this news! This means that she is expected to live to be born!

Another meeting with another specialist confirmed that to be true, but the heart echo on Annie also revealed that the fix isn’t quite as easy as we might’ve thought. Annie has a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).

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This defect is quite severe and will require (at least) three open heart surgeries before she turns three. We can expect the first surgery to be within the first week that she’s born. How absolutely terrifying to think of our fragile newborn laying on that operating table. And how absolutely comforting to know that God has given these surgeons wisdom and compassion and skill for EXACTLY this situation.

And so we grieve the complexity of her condition. While we also rejoice in the ways that God has His hands ALL OVER our little Annie already. We are so thankful for the kindness of our OB who has shared his heart and his ethics about delivery and testing and treatment. “If you were my daughter, I would advise…” What provision from the Lord to have a knowledgeable Christian man as my caretaker through the pregnancy and an advocate for Annie’s life. We rejoice that God has provided a doctor for Annie in the same way. A pediatric cardiologist at Children’s who asked to take our case (a fellow believer in our community) and answer questions like a friend, speaking the truth in love about how to best plan for Annie’s procedures and also how to prepare for the grueling road ahead. We rejoice in God giving us Annie’s name, which means prayer, favor, and grace. We have seen God already using her life for His glory in the humbling number of people who are praying with us for His favor and grace in this situation. We’ve been able to share truth in answering hard questions of those who can’t understand why we’d continue a pregnancy knowing what will and may come in the days ahead.

We do not want this to be our story. But as we muddle through this dark alley, feeling like the walls are caving in around us, God is giving us BEAUTIFUL glimmers of His light to cling to making each next step and each new day possible in His strength.

“Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” -Lamentations 3:22-23

This is God’s story and that makes it good.