Lucie Is Light

Processed with VSCOcam with m5 presetby:  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..."


I broke.


“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.


I digress.


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.


photo 4

Processed with VSCOcam with m5 presetProcessed with VSCOcam with m5 preset


AA04B8F9-6447-4E42-9D96-70243CC49D37Yesterday was the craziest day of our lives. Lisa had been having pregnancy issues, and we knew this was going to be a high risk birth, but over the last couple weeks and especially during the delivery, I occasionally caught pauses or furtive glances among the medical staff that made me wonder if something else might be going on that they were not wanting to say and worry us with. Perhaps it was nothing.  Perhaps it was new dad paranoia.

As the labor grew in intensity yesterday morning, tensions continued to mount in the room.  Extra staff was called in.  Eyes were glued to the monitors.  But all of the tension subsided for us the moment Lucette Ana Gungor entered the world. It was beautiful. Lisa was amazing. Matthew Perryman Jones’ ‘Land of the Living’ was playing from my fairly obsessed over iTunes playlist.  There’s nothing like welcoming a new life into the world. The magic, the beauty, the absurdity of it.  Lisa held our little, purple, crying Lucy to her chest as tears streamed down all of our faces.  But the bliss soon gave way to panic as we began to realize something was wrong.

The doctors took Lucy from Lisa and to the table in the corner to check her more thoroughly. I followed them, and as I stared at her crying  face, something about it seemed a little unusual.  That same pit of worry began to grow in my stomach again, only this time, even more intensely.  In a few minutes, the nurse confirmed to Lisa and I what I had suspected at that table and it knocked the air out of me.

Lucette has Down Syndrome.

The nurse continued to speak, but I couldn't fully understand the noises coming from her mouth.  I was like a spirit no longer present with my body, floating there in the hospital room, not sure where to go or what to do. If I could have spoken, I might have said something like:

‘What do you mean Down Syndrome?  That’s not us… That’s not our lives… Parenting a person with special needs… Our lives are too complicated now as they are.  This just can’t be…’

But words don’t come easily to disembodied spirits.  So I just stared blankly out of the void at the nurse making the meaningless sounds.

Even though this is only yesterday that this happened, I don’t really remember the next hour or two very clearly.  It felt like some bizarre nightmare where I wandered around aimlessly in a dark and lonely fog.

I looked at Lisa, who had tears in her eyes but did not seem to know how to process the information any better than I did.

We sat in the room for awhile and held the baby. People said things.

The ache and fear continued to grow in my gut. I was devastated. I couldn’t see anything but how hard this was going to be. The limitations. The costs. The dangers.  And then the guilt for feeling the things I was feeling.  Shouldn’t I just be excited for this little girl after all?  Dread, sadness and guilt are not the sort of emotions one wants to feel upon the birth of his beautiful new daughter.

The world was spinning. I needed some fresh air.

I took a walk around the block. I felt such grief, anger, confusion, and would occasionally be paralyzed as I bent over in heaving cries.  I called my sister.

She told me that this baby was precious and loved and that this was going to be a beautiful experience.  She told me that we were going to be the perfect parents for Lucy, and that she was fearfully and wonderfully made.

I made more calls.

Everyone was so supportive and positive and compassionate.  Slowly, the lonely, shadowy darkness that I was wandering through began to lighten.  Our amazing family and friends began to surround us and mend flesh back to spirit. The love of those around us was the realization that we were not in fact, solitary ghosts. We were not alone in this. I cannot tell you how wonderful people were to us yesterday.  Family that was not already here dropped everything to start making their way here. Friends drove and sent loving texts and encouragement. Even the doctors and nurses were especially present and kind to us. Love really is a powerful force.

Our heads began to clear. We were surrounded by all of these amazing people and their overwhelming support, but Lisa and I hadn’t yet had a moment alone. So I asked everybody to leave the room for a bit.

When the room was empty, we just held each other and wept.  Deep, guttural crying.  When we had no more tears left to cry, I felt inspired to do something that is kind of odd for me to do these days.

Honestly, my personal relationship with the Bible has not been great over the last few years.  I find it to be such a difficult and misused book that I often just avoid it.  But somehow in the middle of this very real pain, I was struck by that phrase my sister had used.

'Fearfully and wonderfully made.'

So I took out my phone and googled Psalm 139.  I placed my hand on Lisa’s belly and read:  “You created her inmost being;”

That phrase unearthed a new reservoir of tears for both Lisa and I.  It took a long time before I could gain composure to continue reading.  But eventually the words washed over us like a waterfall.

'You knit her together in her mother’s womb.

We praise you because she is fearfully and wonderfully made

Your works are wonderful, I know that full well.

Her frame was not hidden from you

When she was made in the secret place,

When she was woven together in the depths of the earth.

Your eyes saw her unformed body;

All the days ordained for her were written in your book

Before one of them came to be.

How precious are your thoughts of her oh God

How vast is the sum of them

Were I to count them, they would outnumber the grains of sand’

I began to see that this precious life that had been given to us was indeed a gift.  Even though it might not have come in the expected packaging with the exact kind of bow and wrapping paper that we are accustomed to, it was no less of a gift.  Life is a gift.  Period.

Life is more than salary levels or grade point averages.  Life is more than rankings on a chart.  Life is about things like love, wonder and joy.  And let me tell you, this girl is going to be loved. And while I don’t know that much about Down Syndrome (DS) yet, the people with DS that I have seen certainly seem to know how to experience some very real joy and wonder.

Life is a gift.  Lucy is a gift.

We know we have a challenging road ahead of us.  We have been informed, for instance, that Lucy is going to need a couple of major heart surgeries in the next six months.  This is not going to be easy.

But we also believe its going to be an amazing adventure. As I watch Lisa and Amelie (our other daughter) hold and kiss this precious little girl of ours, I already am more in love with this family of mine.  Together, we are going to learn and experience love and joy in new ways. We already are.  We are already connected with our friends and family in a deeper way.  And Lucette is gorgeous.  Her name means light, and we know she is going to continue to bring so much light to a world that needs it.  Welcome to the world, Lucy. We are so grateful for the gift that you are. You are and will always be loved.

The Practice of Sight / Motherhood

Light crawls from the corner up the molding, then spreads across the glass panes one by one, sheets of glowing sun.   Silence rests on the yellow chair across the room, like a comfortable friend, sharing in the dawn of this day through angled shadows on the patterned tweed. A gentle hum emerges from a city waking, starting its engines, opening doors and arms to another day of possibility. Selling stocks, cheese, adds, energy, coffee.  Feet begin to treat the grid of yet another day. Then I hear it, soft, unmistakable sound of small feet padding floor. I can feel the presence before the sound, the breath on my face because she leans in so close and quietly before her hand softly touches my arm. I look, she smiles broad with excitement and asks if she can put a princess dress on.  Tired, my first impulse is to crawl within the covers and tell her to go back to bed.  I need sleep. But how many times do I get this? The smile, the hand, the excitement of child who’s only desire is to put on a princess dress. Of course, why wouldn’t you want to start the day in glitter and lace, magical imagination. I have the choice to brush off this childishness, the wasting of time on something simple…or actually see and feel the moment that has been handed to me.  She wants me to see.

I will never forget the first time I held her – soft new skin, smallest wrinkled toes, wide eyes looking up at me, blurrily seeing for the first time, lungs taking in air, ears taking in sounds of a new world. Birth. It’s absolutely crazy, incredible and terrifying all at the same time. So much pain and breaking of the body, then at once, flooding love with sight of this small being, a witnessed miracle.


It’s been almost four years now. There are times where it is easy to see the magic of it.  There moments of connection and joy gush freely.  Nothing could be more wonderful, elating – your heart runs around in the sunlight and the world is as it should be.

Then there are the hard times. Where the magic has been sucked from the room,  your 3-year-old has just performed the tantrum of a lifetime and with one foul swoop took your very soul and dignity. After wiping the last tear from her face, she then smiles and informs you “this is just how girls are (emotional).”


We chip away at the hard surface, desperate for a drop of that gushing joy to sneak out again. One. More. Time.

Tonight, I’m remembering the struggle, how hard it was for us, like so many others, to find the magic. So we tried to have a child for years. T r i e d….a n d…. t r i e d.  Which is slightly awkward to tell strangers because everyone is thinking the same thing “lots of sex.” But for some reason, we just couldn’t get pregnant. Years passed of attempted adoption, tests, trying, giving up, more tests. Giving up.

The rollercoaster ride of not being able to conceive a child was heart wrenching. I never knew the journey would possess so much pain. It was the beginning of a great struggle for me, one that lead to a massive shift of belief.

Astonishing how many women I came in contact with that were on the same journey.  We would e-mail, call on Mother’s Day in hopes to help the great ache of longing, cry when it was too much, and helped each other unclench our hearts and hands. None of us liked being “that girl”  - the one the others were afraid to tell their good news to, the fragile one.  I was in a mentorship program at the time, mentoring a 15-year-old girl.  It was unbelievable how many of her friends were pregnant, how so many girls who didn’t want a child had a child or multiples …gaggles and gaggles of children.  It was like a really bad joke.  “Okay, I get it. Stop flaunting your awesomely fertile wombs and placentas that produce fleets of offspring, it’s gross…and over-populating.

I would walk around the house at times, singing this melody and words, hoping I would believe it someday:

“You make beautiful things.”

I wanted to believe it, but it was like a children’s story once heard and now too old, too experienced to hold on to. I heard of miracles, but didn’t believe anymore because of the lack of seeing. The floating light blazing in the sky, giving all things life, that was everyday occurrence. My eyes were clouded. Still, I sang the melody, like a meditation for my own soul, hoping I would believe it again.

A long time passed…moving forward, falling back, then forward again. And the meditation changed – it slowly became more about seeing the miraculous right in front of me than looking for a whole different miraculous. Seeing miracles actually happening all around me.  It felt like ages, feeling your way through the dark, not knowing if there was light at the end of the tunnel. But it happened, the years of shifting, letting go, and discovering all led to a place of not just being okay, but complete.  Grateful.  I did not need something else/ someone else to believe this Love creates beauty all around us. I could sing the words because my eyes were beginning to see again. It was there all along, the light crawling up the window pane, the floating orb that gives off just the right amount of heat so I live, the hum of a world awakening, selling cheese and bread and energy. It was there, I just had to practice sight.

So when we surprisingly heard those lovely words – “you’re pregnant,” I was grateful/ jumping out of my skin/ ecstatic in so many ways.  I was so grateful the pregnancy wasn’t the thing that made me believe in Love again. I believed in Love again because she is Present Reality. She wants me to see.

So I sit here.

Thinking of the gift.  Thoughts of my almost 4-year-old and how she has dramatically changed our lives.  How she calls my name at night when she has a bad dream. How she crawls into our bed in the morning to kiss our faces and lightly run her fingers over my nose. How she is thoroughly entrenched in girl world, dresses, beads and lace. And how we are just days away from meeting this new one. As I write this, she kicks and moves around in my belly, a crazy, alien-like experience.  In a few days, Motherhood will greet me again, with a whole new heart, lungs, and experiences.

I get so many days of this.

Magical moments, waiting to be seen.

And at the same time, I think of the struggle - for the women who are still longing for a chance to see these moments, or have faced the utterly bitter loss of a child. Still hoping for a tiny hand to grasp their own, a small voice to call out to them at night. My heart, like many others, is with you. There is no silver-lining, no reason, just the feeling of lack. But I know our stories entwine, and though you may feel completely alone, please know, you are not. You are intrinsically connected to all of us who have felt the ache.  You are not alone.  There is still magic for you. She, Love, is here for you.

So if your arms are full – may you grasp the moments that have been handed to you. The hard and the wonderful, they are all magic, may you have the eyes to see.

And if your arms are longing – may you feel comforted, feel the hand of God our Mother holding you close the way a mother does.

These moments we are given are a gift. They react to our attention, shape us and others around us. In pain, grief, gain, fullness, whatever thoughts Motherhood holds for you today, may you have the eyes to see, there is magic right in front of us.