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.

Now I Know

I used to think I’d be thankful if one day Annie woke up with a regular heart. I used to think I’d be thankful if one day her doctors revoked their prescription of 6 daily medicines. I used to think I’d be thankful if she didn’t need regular pokes or phlebotomy care. I used to think I’d be thankful if one day we realized it had all been a very bad dream.

I’m probably right about what I used to think I’d be thankful for. But lately I’m rejoicing in ways I never expected to.

Lately I’m thankful that, for the first time ever, I successfully administered Annie’s finger prick INR check at home. I was calm! Annie was cooperative. She even offered up her plump thumb on her own and then pumped it herself to produce a ladybug-sized glob. What a talented 4-year-old.

She smiled and unwrapped a striped band-aid while we both watched the screen for the result. “Look, Momma! Two point five. That means I’m good.” Can’t complain that she’s reading her own results too.

Now I know I’m thankful that a weekly blood check can be done bent over a kitchen table instead of strapped into a lab chair.

Lately I’m thankful that there’s an anticoagulation medicine that keeps Annie’s life-saving stents open. I was heartbroken last week to find out that even though it stabilizes her pressures to help sustain her life, Coumadin also causes “cold intolerance.” Says so right there on the box (that I’ve never seen because I always pick this up in a neatly repackaged pharmacy bottle).

How can we have recently moved to a cold climate to be near her life-saving pediatric care center…and simultaneously moved to a cold climate that her body cannot tolerate? Something’s gotta give!

I felt again like I’d only be thankful if she didn’t need this medicine anymore! Until I realized I’d be thankful for the kindness of a weathered school community who recognized Annie’s incompatibility with the cold and responded with bundles of size 4/5 warm winter layers. Twice last week Annie bubbled over about a school day in the backseat while unzipping her backpack. “Mrs. Horton got me these things at Target, Mom!” and “Somebody sent this bag to my classroom for me. I don’t know them though! Maybe you do?”

Now I know I’m thankful that there are solutions and insider secrets for keeping bodies and hearts warm in Pennsylvania.

Lately I’m thankful that there’s a new place we’re calling home. We’re missing our family, our church friends, our school community, and our old workplace settings. Some days when I hear about holiday parties or family get togethers, I’m certain that we are missing out on the good life. Until I stop looking outside and start looking inside to realize that we eat dinner together as a family every single night now. We’re not missing Matt on the other side of the practice field anymore. We’re watching Audrey giggle and grow with a church bestie, sitting in a second row pew every Sunday. We’re watching Annie memorize scripture and learn letters and practice monkey bars at school every day.

Now I know I’m thankful that we’re getting things we always wanted in a place we never knew to wait for them.

Some nights we ask each other if we’d still decide to pack up and go home if we could. While the resilience of the yes has faded, the answer hasn’t changed. And maybe it never will. But we know now that we’re thankful that God can make home wherever He puts us. And our quaint white stucco house is transforming into a cozy home full of new traditions and the same faith that brought us all this way.