by: Lisa Gungor
Pain is one of those things I don’t like much.
I’m sure there are at least a few people who share this sentiment. We’ve all heard the saying “what doesn’t kill us makes us stronger.” Normally when I hear that, I immediately revert to a juvenile eye roll or mutter a slew of choice words under my breath. This is because I have never understood why the pain is necessary. It’s kind of like hackers – if hackers didn’t exist, there would be no need for firewalls. But people have learned how to create stronger firewalls because the hackers exist. The whole “you can’t have one without the other” deal. People learn how to be stronger because pain exists. But I’d much prefer the hackers didn’t exist. I’d much prefer the pain just leave me alone.
This was my stance, up until the day Lucie was born.
I am sitting here thinking back on her birth. Remembering the labor, the elation of the first time I laid eyes on her tiny body - immediately, unreservedly in love. Remembering the blur and the feeling of falling that came when the nurse told us about her. I can still see the nurses face, see the anxiety in the posture of her body and movement of her hands as she said “she has features that are consistent with Down Syndrome….”
I don’t remember what she said next. I saw her mouth moving, and I nodded like I was actually listening. But I was falling, or really caving inward like my body was a black hole, sucking the air and all emotion inside itself and just disappearing; mind all a blur, heart pounding and painfully breaking.
They took her from me, said something about more tests…she was turning blue. Would my sweet girl be okay? Would she talk? Walk? …would my girl live? I felt I had done this to her, I failed my Lucie. I felt I didn’t supply the proper womb for her to grow in, that I didn’t give her the best possible chance. And I felt I had failed Michael.
I remember Michael's face. We locked eyes in this unspoken shared pain; we reached for each other. He was trying to be strong for me but I could see it there plain, a helplessness that overtook him, a broken heart for his baby girl. We had no words for each other, it was just shock, like the universe flippantly decided to throw two parents into a different world in one fowl reckless swoop.
I remembered shrinking beneath the pile of hospital blankets; I couldn't hide my pain enough as uncontrollable sobs shook my body. I was ashamed at how I felt. Ashamed I didn't only feel joy, only excitement at her arrival. I felt I had been tricked, this was not our life, we were not the couple who could handle a child with special needs. Quite honestly we are pretty selfish with our time and drive any personality that leans toward the scheduled type totally crazy. We travel a ton, stay up way too late, love to sleep in, aren’t the most patient, pretty forgetful…two creative types, not the best combination for a structured household. We were nowhere near prepared to supply a child with special needs the balanced life she would need. This was not what we had dreamed.
Somehow I had made plans for this little life without even laying eyes on her. I had made plans for her future, expectations for her relationship with her older sister – dreamed about them calling each other in the middle of the night, heard their conversations about friends, school, favorite coffee, future careers, families...whispers about first kisses and boys. I could see them huddled in a pile of blankets in the tent we bought for Amelie’s third birthday...telling secrets beneath the covers and giggling like mad. Me telling them to go to sleep for the 10th time.
Unconscious plans. And in that moment, they all disappeared. The relationship I made for them disappeared. And embarrassingly enough, the baby girl I dreamed up disappeared.
Friends and family trickled in with smiles holding both sadness and joy, grabbing my face, leaning in close with tears brimming and saying "we love this girl, she is precious, we are here for you." Sister, Mother, in-laws, old friends, all surrounding, becoming the support I needed to breath in and out.
And then I remember Michael coming back into the room; everyone leaving, and him tenderly putting his hand on my me.
"For You created her inmost being..."
“You knit her together in her mother’s womb….she is fearfully and wonderfully made…”
We sobbed in unbearable pain.
But in the same moment, something else happened….I have not ever and may never again feel such an insurmountable force of love.
“Fearfully and wonderfully mae…” Those words washed over me like a Holy Other hovering over void and calling things into existence. Giving life. Knitting two broken parents together, stitch by stitch. I have thought about that moment countless times the past five and a half months. It was surreal, grief and miraculous love; a great summit of my life.
In that moment, I loved Michael more than I could ever dream up. And not some fickle romanticized dream world love. A painfully real, vulnerable thing opening up a well I did not know existed.
I had never realized what a beautiful experience it could be to share in suffering. There we were, totally broken, scared for the future, thrust into an unknown world. And there was a great force of love right there, like a miracle, showing us that this is what family is about. This is what friendship is about - support when you crumble, breath when your lungs fail, believing in you when you don't, seeing you at your worst and not only remaining in the room, but leaning in. The scary kind of close.
I realized, I just had to hold my girl - that is all I wanted. Thankfully they let us in to see her, and as I put her tiny body on mine, that is when I finally felt it…breath. I felt this peace and life pulsing back into my veins. The spinning slowed, and all that mattered was that she was ours. She wasn’t medical conditions, uncertainty, or frightful future, she was ours, she was loved, and she was a gift.
It’s crazy, I look back at all of this with new eyes. Amazing at how crushed we felt that day when now, now I see it all as a gift. This girl. She has unlatch something in me and I feel nothing but lucky. And I have found that I now do something that is perhaps a little strange…I watch other kids with Downs. And by “watch” I mean stare at. And by “stare at,” I mean follow and spy on with great excitement down the street or in the grocery store or wherever they happen to be. Weird?
A few weeks ago, I walked through the airport to baggage claim and I saw them, a mother and her son - her smiling down at him, him beaming up at her. And then I noticed it…the features…he had Down Syndrome. Immediately, I had the urge to run toward them excitedly while waving Lucie in the air like some sort of country flag “Look! Down Syndrome! Awesome!” I wanted to scoop him up and squeeze his cheeks, give the mother a big hug and chat up a storm right in the middle of baggage claim chaos.
I didn’t do any of this for obvious reason like scaring her child or because waving my baby in the air while yelling out “Down Syndrome!” felt like bad manners as well as borderline appalling. But also for the reason that I did not in fact have my Lucie with me, nor, upon a second glance, was I positive he had Downs…pretty certain, but “pretty certain” in this case is not something you want to gamble on. So that would be the worst of it – approaching a mother and congratulating her on her Downs child when he actually was not.
The thing is that I was startled at the strength of these feelings; my immediate feeling of connection. And though our babies would be very different, she would know what I knew, she would have the same secret thoughts, experience the same thrill of hearing her baby swallow, know the angst and elation from struggling or reaching each physical milestone. We would share in this experience and it would be a comfort for the simple reason that we are not alone. She would know the feeling of loss then rebirth.
And though I lost it for a moment, I hear it all again – the whispers in late night, phone conversations about friends and jobs, plans for the future of these two girls I get to mother.
And the pain…yeah, somehow it has made us stronger. Amazingly I am grateful. I am sometimes still scared, sometimes still worry about what she might face, I’m sure I will still have my hard days that come with anyone that has experienced the sleep deprivation, crying at 4am, diapers, barf on your pants and shirt and car, breast milk on the same…the oh so classy world of parenting. But I wouldn’t trade our story for anything, not ever.
Because this side of love, it is something to behold.
So here we are, almost six months later, three days away from our baby’s second heart surgery. And I just can’t explain how grateful I am – grateful for our family, grateful for our friends, grateful this surgery exists, for the surgeon who is going perform this incredible task of fixing our girls heart. Grateful for all of the countless families who have walked this road and sent messages of encouragement – your words have completely held me.
Lucie. It means light.
So on October 15th, the night before Lucie’s surgery, we are going to do a little something. We will stand outside and hold up a light, just a small flame, but a symbol of how these children our world is gifted with help us see; a symbol of solidarity to parents who know this road, who have felt the unbearable loss, beautiful gain, or a lot of the time, both. Anyone who wants to join in, please do so, and if you would like, please share a picture or a video on Instagram or Twitter (@gungormusic, #lucieislight), we’ll look for you and send a whole lot of love your way.
Love is a force, and it’s strength is seen when we lean in close, dig beyond the pain, and find there is indeed, a light.