This article was originally published by Beauty From Burnt Toast, authored by Meaghan Dawson. We are honored to share this story.
There are certain moments that divide our lives into before and after. Some are large scale and universal – we all know life before and after 9/11. Some, though, are smaller, more personal. Some are beautiful, the best kind of moments, the first kiss with your last love, your wedding day, the birth of your child. But some are harder. Some are traumatic.
And these traumatic memories are often shaky at best. What you think you’ll remember, what you should remember, is often fuzzy and gauzy, hard to recall. But the mundane, the small things surrounding the trauma, those are solidified, movie-reel quality, easy to recall, in surprising clarity.
Life is funny like that, I guess.
The day we found out about Connor’s cleft and the majority of our hard and heartbreaking journey through his first year are just like that, contrasting and incongruent. Things that should be emblazoned in our memories, well they aren’t. They’re fuzzy and soft. But the little things, tiny snapshots of tinier moments are rock solid. They’re permanently tattooed on our brains.
They discovered Connor’s cleft at our 20-week ultrasound. You know the one? The one where we think it’s mostly about finding out the sex of the baby? Yeah, it’s not. It’s so they can scan every square inch of that baby’s body to check for defects. In ours, they found one.
I was alone when they told me, except for Dillon, my squirmy, constantly moving one-year-old sitting next to me in the stroller. I was innocent enough to believe that the post-ultrasound meeting the doctor requested was a mere formality so I sent Jeff back to work. I didn’t realize what was to come.
So I sat there, in her brightly lit office (see, the things we remember are weird) and listened as the doctor explained what they saw on the ultrasound, how they suspected he had a cleft lip and, most likely, palate. She told me that we would need more testing to determine the severity and if anything else was affected, as clefts are often part of much larger and more complex syndromes and disorders. She told me that she was sure it was ok.
Definitely maybe, probably okay.
The things I should remember about this moment are blurry and vague. Was the doctor kind and caring when she delivered the news, or worse, cold and medicinal, without compassion? The ultrasound tech, did she give any tells? Did she stop once she got to his face and run the wand back and forth, back and forth, trying to be certain that what she was seeing was real? That it was, in fact, a cleft? I don’t remember these things at all.
But I do remember sitting in that office, absorbing this news in waves that crashed over me as the doctor talked. I’m sure my mouth was gaping wide open. I’m sure I looked like I had been punched in the stomach. I do remember clenching tightly to an old bag of dry Cheerios, handing them over to Dillon individually, one by one, in a strange repetitive motion, unconsciously, as if the steadiness of my movements could soften the blow of her words, cushion my fall.
It did not.
It’s not a short ride, the trip from her office to our old house, yet I don’t remember any of it. I don’t remember if I cried. I don’t remember if I called Jeff (surely I did) or what I said. I don’t remember calling my mom or my mother in law. But I know now that I did.
I do remember carrying my still squirming baby boy up the stairs to his room and collapsing on the ground next to his dresser, unable to move, unable to even cry. I remember Jeff finding me there, picking me up, holding me, our collective shock and grief too big for words, just touch. I remember these things.
There was so much to decide and quickly. We had 1 million pamphlets to read and absorb, pictures of children, babies, with clefts. I found it excruciating to look at them, my instinct to turn away (our instinct is always to turn away), but I forced myself.
This would be my child. This would be his face.
We had to decide on testing, our window was closing fast. We had to decide if we wanted to know–is it worse? Is there more wrong? And what then? We didn’t. We opted out of testing. This was already our child. He was already Dillon’s baby brother. Testing would tell us nothing. We loved him already. We decided to wait.
The next five months of my pregnancy were filled with uncertainty and worry. What should have been a time of nesting and joy was rife with waves of panic and despair. What would he look like? What if I can’t accept his face? What will people think? And, worst of all, what if there is something else wrong? What if he doesn’t make it…
These were my thoughts.
But also, a strange thing happened during this time. I grew up. I got tough. And I began to fight for my son. Even through all of the emotion and fear, I knew that I was NOT ashamed of him. My biggest act of defiance would be to tell the world about him. To stare down pity and disgust and fight, always fight, for him so he knew, yes, even in utero, that we loved him and we were NOT ASHAMED of how he looked.
Memory, once again, plays tricks on me here. I remember being bold, almost abrasive during this time. I’m pretty sure I made it awkward, and that, at times, I was a total Debbie Downer. I told everyone about his cleft, even strangers who asked if it was a boy or a girl, I made it weird. They were just being nice; they didn’t necessarily need a run-down of my unborn child’s expected medical conditions. But they got one anyway.
I was NOT ashamed.
And then he was born. After months of waiting, our beautiful boy was born. There were hundreds of people in the room (see? fuzzy memories are susceptible to exaggeration). They didn’t know what to expect with his condition so all hands were on deck.
He was beautiful, with a large (very large) gap in his smile and a matching one in his palate. But he was beautiful.
I don’t remember much of his birth. I don’t remember if it was long or hard or eventful. I don’t remember holding him right away (I don’t think I did, I think the doctors took over). I don’t remember feeling shock or fear or sadness. I don’t remember feeling much.
I do remember Jeff turning to me, once the room had cleared and we were alone, saying “It’s bad, isn’t it?”
Because it was visually jarring. As clefts go, it was large, a Unilateral Complete Cleft Lip and Palate. Unilateral meaning on just one side, complete meaning it was a full cleft, involving his entire lip and nose. It was jarring.
But he was still our baby and to us, he was the most beautiful of beautiful gifts from God.
There were struggles in those early days. I couldn’t nurse; it’s not possible with a cleft. And I chose not to pump, knowing that every time I did I would feel a little jolt of sadness for yet another loss. I couldn’t bear it. So I chose formula. I still feel grateful to the Labor and Delivery nurses who held the La Leche League ladies at bay, telling them I was off-limits. A lecture about the benefits of nursing and pumping was not going to be helpful. It would heap more guilt on my already sagging shoulders. Those nurses knew this. They were angels.
But still, it took him forever to eat. I mean forever. Typically, a newborn eats every three hours yet you time this from the START of his last feeding. Which is great, except it took him nearly an hour and a half to finish a bottle so it felt like he was constantly eating. Milk would come out everywhere. From his nose. His ears. EVERYWHERE. He would gulp for air, swallowing so much because of the giant hole in his mouth and his inability to properly form suction or suck, nearly suffocating. It was terrifying at times.
Yet this child, this beautiful baby boy, kept working. He never cried. He just worked and worked, if it’s possible for a baby to be earnest in his endeavor, he was. His indomitable spirit showed through even then.
Going out in public was interesting at best. There’s this deeply embedded human instinct that creates an almost visible gravitational pull towards babies. This exists primarily in women, though you see it in men as well. It’s a need, an almost unconscious and unavoidable urge to want to cuddle, hold, tickle, coo, and (for some unknown reason) congratulate parents on the perfection of their offspring.
Except, when your baby isn’t perfect it gets extremely awkward. And fast.
It’s heartbreaking when you’re that parent, standing there with a baby you love more than life, who is beautiful in your eyes. It’s heartbreaking as you watch someone approach with this hunger in their eyes, only when they get close, they can’t quite make sense of what they’re seeing. They don’t know what to do or say. They go silent. It’s easier to pretend you and your baby do not exist than walk through the awkward and complicated social maneuvering required to acknowledge the baby and politely, so politely, ask what is wrong. Most people move on. You are invisible.
It’s an act of mercy to let them go; to watch their face register first confusion and then embarrassment.
What do they say? How do they get out of this one? So you let them off the hook, assume invisibility. But it’s an act of mercy that breaks you, every.single.time.
But then, the kindness of a stranger…
I remember being on a flight with Connor, getting settled in, when a flight attendant approached us walking steadily down the aisle intent on seeing the baby. You could see it as much as feel it in her gait and facial expression. Only when she saw his face, she couldn’t quite bring herself to stop. It was easier to move past our row, eyes averted, and pretend that we were invisible. There was a baby a few rows behind us, a “perfect baby” with a perfect face, and I sat in tatters as she held that baby and bounced that baby and made a huge fuss over her, for most of the flight.
I wanted to die inside.
Until, as we exited the plane an older man said to me, with the kindest eyes, “How is he doing? He’s beautiful.” I don’t know how he knew what I needed to hear or how much just that simple acknowledgment would matter to me, but he did. It reminded me that we existed, yes, we were there. We mattered. And my mom heart opened just a bit because of the kindness of a stranger.
“Hurry up and fix it.”
As Connor grew, he surpassed everyone’s expectations. He learned to take a bottle. He went through all of the important milestones. He was, for all intents and purposes, completely “normal” except for the cleft. And man did we love that wide smile. To the rest of the world, it was a defect, one we felt pressure to “hurry up and fix”, but to us it was precious. It was his.
He had huge blue eyes, he still does in fact, and he was always alert, always observing. He was a wonderful baby. He rarely cried, despite suffering from terrible reflux (because he took so much air in at each feed) and struggling with ear infection after ear infection after ear infection, leading to unsuccessful surgery after unsuccessful surgery.
And then…the big one came. It was time to say goodbye to his wide smile, forever.
It seems odd that we would have to fight with our insurance company to get coverage for his cleft repair. It seems weird, but it’s true. The surgeons who repair clefts are plastic surgeons and because our collective wallets and premiums have to be protected from those pesky babies trying to get elective surgeries on our dimes, the mere fact it was labeled “plastic” categorized it as “elective.”
Despite how ridiculous the thought was, that anyone would ever choose to get plastic surgery for an infant, that is what we were fighting. And fighting hard. His surgery was delayed for months because of this. We got decline after decline after decline. It was one of the darkest times of my life.
Memory is weird, yet again, as I don’t remember what eventually broke the stalemate. In my mind, Jeff marched down to his HR and staged a sit-in, complete with peace pipes and protest songs, until they intervened. But I’m not sure it was that dramatic (especially if you know Jeff). Nevertheless, we were cleared. And surgery was scheduled.
Sending any child into surgery is terrifying. Whether it’s a simple tonsillectomy or a complicated heart procedure. The same feeling stands. You are completely helpless. You feel like you’re operating outside of your body. You’re sending your baby, the child born from your flesh and blood, into an operating room so people can put him to sleep and cut him open. You want to trade places. You want the pain, not him.
But you can’t. You can’t trade and you can’t be there. It’s your child’s journey. Not your own.
It’s a wonder there aren’t more mental health interventions within the walls of a children’s hospital waiting room. It’s that scary.
But a cleft surgery is weird. Your child comes out looking completely different. The lips you kiss goodbye before surgery, you will never see the same again. You know, that at the end of that surgery you will be seeing your child for the first time. Again.
You think you’d be excited to see this repair happen, to hopefully put a halt to the stares and the invisibility. But you’re not. You will miss that wide smile. You want to scream STOP. But of course, you can’t. And when your baby comes out, you reacquaint yourself with his beautiful face. His is whole. He’s stitched up.
Life after the repair was easier. He looked more “normal.” In Connor’s case, you could barely tell. Shortly thereafter, you do it again, this time for the palate. You give blood because the chance for a bleed out is high. You go through it again. And for Connor, he’s had three more major and multiple minor surgeries since then. He will have more.
He had speech therapy for years. He had to learn how to drink from a straw and eat again. He wore arm restraints (appropriately called No-Nos) after each surgery so crawling and walking were delayed. Everything was harder.
Yet still, it never defined him.
Connor’s cleft made him stronger. It gave him insight into pain and struggle and a heart full of empathy, one I even struggle to understand as an adult. He’s wicked smart, and his questioning and contemplative nature give him the air of someone more mature than his twelve years on this planet.
He’s gorgeous, cleft scar or not. And he’s an all-around good kid. He helps others and is kind. He is a loving son and a good (albeit not great because siblings are annoying) brother.
What I thought would define him instead strengthened him, made him better.
We don’t understand how God found us worthy of being his parents. We didn’t understand then, nor do we now, how we managed to make this child so imperfectly perfect. We do not understand but we’re grateful every day.
One of the most remarkable things about Connor is that he understands very clearly how his journey has been different and more painful than most children. Yet instead of being bitter, he has managed to embrace this part of his life, his uniqueness, and his difficult path, to make him better.
That empathetic heart I mentioned above, it beats specifically for other children born with clefts and facial deformities. Children who aren’t as lucky as he was to have the opportunity to have the surgeries to repair their lips and palates. He grasps, even at a young age, that life without these painful surgeries would have been near impossible for him to navigate.
Yet despite the fact that every 3 minutes a child is born with a cleft or other facial deformity. many families can’t afford the simple surgery to repair their child’s clefts. In underdeveloped countries access to the proper medical care and the appropriate doctors is a hurdle it takes money to cross, money many families do not have. It costs $240 for a child to receive a life-changing cleft surgery through Operation Smile.
Just $240.
Connor’s empathy and understanding is what led him, three years ago, to partner with Operation Smile and ask his friends to donate to a giving fund instead of giving him presents. That year he raised enough to sponsor three surgeries and give three children the chance at a new life. The following year, he worked even harder and wanted to do even more, earning a whopping $1,700 in donations to sponsor 7 surgeries and change seven lives.
This year, for his 12th birthday, Connor is again asking for donations instead of presents and has even bigger goals, hoping to raise $2400 to sponsor 10 surgeries for children around the world.
And in a year where there didn’t seem to be an awful lot to smile about, we can smile about this. This boy, not even yet a teenager, turned a painful journey into something beautiful, something life-giving. Won’t you join him in this quest to save smiles all over the globe? We’d be more than grateful if you did.
