"The Weight": Repost for Cleft and Craniofacial Awareness Month
To say I was blindsided by Royce’s cleft lip and heart defect would be an understatement. I didn’t see it coming, not for one single second, and the trauma of his birth forever changed the course of my motherhood journey. July is National Cleft and Craniofacial Awareness Month, and to help raise awareness I’m re-posting one of the most vulnerable essays I’ve ever written about my experience.
These days, I hardly notice Royce’s scar, and his birth defects only come up twice a year: at his yearly well child appointment and the dentist. But his mild cleft lip was once all I thought about and all I (heartbreakingly) saw. And it forever clouded the way I think about and experience pregnancy.
The CDC reports that, in the United States alone, about 2,650 babies are born with a cleft palate and 4,440 babies are born with a cleft lip with or without a cleft palate, ranking craniofacial anomalies among the most commonly occurring birth defects. While there is a link between folic acid intake during pregnancy and cleft lip and palate, there’s still a lot to learn about the occurrence of these types of defects.
Looking for ways to help fund research and treatment? ACPA (American Cleft Palate-Craniofacial Association) is my personal favorite. An easy way to donate is to visit smile.Amazon.com where you can donate a portion of each purchase to the non-profit organization of your choice. Select “Cleft Palate Foundation” to have Amazon donate directly to the ACPA on your behalf.
Another great way to help? Donate to your local children’s hospital. Often, private donors help bridge the gap between what private insurance covers and the balance owed by families. These private financial assistance programs can be lifesavers for families like mine.
The Weight
June, 2015
The house is unbearably hot, but the sound of the window-unit air conditioners rattles my already frazzled nerves, so I’ve turned them off again. I stand in the tiny downstairs bathroom, looking at my foreign postpartum body in the mirror and watching as tears stream down my face. There is silence on the other end of the phone in my hand, my mom waiting patiently for me to get the words out, to take some of this weight from me and shoulder it as her own. I desperately try to control the tears, control my emotions, control the grief that I can’t even accept as grief yet.
‘He’s not the perfect baby I pictured. It’s just...I’m sorry, I’m just really emotional. I think it’s my hormones.’ I stammer between sobs. I turn from the miserable stranger in the mirror, and walk away disgusted with myself.
I feel a heaviness in my body. Much heavier than the tiny 7 pound newborn sleeping upstairs. Heavier than anything I have ever tried to carry before. Too much weight for one person to carry alone, but I am stubborn, and unwilling to admit that I need help.
***
May, 2016
‘How old?’ the middle aged checker asks as she scans my cart full of groceries. I am preoccupied with keeping my very active 11 month old from grabbing the candy, or gum, or yanking my card out of the chip reader again, so by the time I realize she has spoken to me she is staring pointedly, as if I have snubbed her.
‘Oh! I’m so sorry, I didn’t hear you!’ I’m flustered, and my face feels hot, the weight of her gaze making me feel as though I should be better at this. ‘He’s 11 months!’
She turns to face him, and he leans as far away from her as possible in the seat of the cart. ‘It’s ok, buddy, you can say hi if you want,’ I say as I grab his hand and bounce it up and down in my own.
‘It’s ok,’ she says to me, her expression not exactly matching her words. ‘Would you like a balloon?’ she asks him, in what seems to be an attempt to make us all feel better about this awkward interaction. She turns back to me and raises her eyebrows, asking permission.
I nod, and smile. ‘He loves balloons, that would be great.’
She turns behind her, and untangles a ribbon from the web attached to her station, then hands the balloon weight carefully to him. ‘Here you go buddy, this will make that ouchie split lip of yours feel better.’
I can’t hide my confusion and irritation, and I feel my face contort into a look of pained annoyance. Knowing that she is referring to his Cleft lip, I stammer out a thank you and wheel the cart to my car.
After unloading the groceries and safely securing my son and his balloon, my hands shake as I call my husband in the parking lot. But he doesn’t answer, and I am left burning with anger, and irritation, and, if I’m honest, shame. Why can’t I get over this? Why do I even care what some stupid middle aged woman says about my son’s appearance? I drive home with tears streaming down my cheeks, overcome with the weight of it all.
***
February, 2016
‘Can I ask you something about his lip?’ a friend asks nervously. I am standing in a freezing cold arena, waiting to watch my husband rope. My son sits perched on my hip, completely enthralled by the bawling cattle, the horses, and the ropes flying through the air.
‘Sure.’ I say. But I already know what he will ask. His wife is pregnant, and I can see the worry and fear written all over his face.
‘Did you know about it before he was born?’
The question that so many people want to know, but are afraid to ask.
‘No. We had no idea. They missed it in all the ultrasounds. We didn’t find out until he was born.’ My answer disappoints him, and his nerves fill the space between us. I glance away, desperate to find my husband in the crowd, but it’s too late. His fear has added to the burdensome weight I carry, and I am left shifting my son from hip to hip, trying to balance my load.
***
August, 2015
Her name escapes me, but I remember her face. They have driven all night, ten hours from Eastern Montana with their son, at the urging of the rural hospital where he was born. She tells me about the rare genetic disorder that was discovered in utero, and apologizes for nervously checking her cell phone.
‘We have two older kids at home. I had to leave them with my mom…’ Her voice trails off, distracted by a message on her screen.
Glancing again at her son, I am taken aback by the tubes, and by the severity of his birth defects. Desperate to look away, I look around the waiting room we are sitting in, and see wheelchairs, and specialty medical equipment, and sick children everywhere I look. Each one of them accompanied by an exhausted, burdened caregiver.
I smile at the woman as she looks up at me again. So badly do I want to say something, anything, to ease her suffering. To ease my own suffering. But as I look at our two sons, side-by-side, I know that I am the lucky one. In the competition of ‘who has it worse,’ she wins. Every time.
When they call our name from the orange doors of the Craniofacial Clinic, I am surprised by how hard it is for me to get to my feet. I struggle under the weight of it all: the infant car seat, but even heavier, my grief, my shame, and my guilt.
***
February, 2017
The room is too dark, the couch is too soft. I am distracted by the mess of paperwork on the desk in the corner, feeling an overwhelming urge to tidy it up. I don’t want to be here. I have known this day is coming for weeks, and I’m still not ready.
‘Let’s see...where did we leave off?’ My therapist’s voice is calm, and I’m surprised by the anger I feel toward her. I want to shake her shoulders and scream in her face: ‘YOU KNOW EXACTLY WHERE WE LEFT OFF!’ Instead, I twist my sweaty hands in my lap, waiting for her to read through her chart notes.
Half an hour later, I have shredded three tissues, and sit surrounded by paper shreds, like a naughty cat, or nervous toddler. It has taken all of my strength to tell her what details I do remember of my son’s birth story, and I am emotionally spent and exhausted. ‘It’s ok to let yourself grieve. It’s ok to use the word traumatic.’
There it is. The permission I’ve been waiting for. The invitation to set down my baggage, and leave it in this dark, messy room. But I can’t. I look into her kind eyes, pick up my heavy bags, and struggle out the door, thinking of the mamas in that waiting room. The moms that have it worse. The moms that deserve their grief.
***
June 30, 2016 06:00
‘Will Mom or Dad be accompanying him back?’ the nurse-that-looks-too-young-to-be-a-nurse asks. The four of us are crammed into a tiny pre-op room, seated awkwardly around an iron-railed hospital crib that I refuse to stick my 12 month old son in. My husband and I exchange pained glances. We have discussed this already. It will be me. While I asked to be the one, part of me hoped that he would fight me on the issue.
When it’s our turn, I gather my sweet boy in my arms. He struggles against me, wanting to walk on his own and explore this new, strange place. I desperately try to stay in the moment with him, to see every detail of his face: his crooked grin and chubby cheeks, his white blonde hair and gap between his teeth; to remember how he looked as God gave him to me. But the hallway to the operating room is too dark, and I am distracted when the room itself looks everything and nothing like I expected it to. I need a minute. I want to scream at everyone to be quiet, to stop moving. I’ve been anticipating this day for 393 days, and now that it’s here I’m not ready.
***
June 30, 2016 14:00
I follow a different nurse down the same hallway, this time headed for post-op recovery. My heart beats in my ears, making it impossible to understand what he is saying to me. As we enter the recovery room my eyes frantically scan the cribs for my son. My heart jumps when I spot him: sitting on a nurse’s lap, in a tiny mickey mouse hospital gown, clutching his grey blankie with the hole in it.
Then, we are rocking together, as we have so many times before. Just the two of us, in this strange room, in this strange chair, surrounded by strange and unfamiliar noise. I stroke his hair, and gaze into his beautiful blue eyes, so filled with love and adoration. I examine his stitches, surprised by how few there are, and he smiles his big toothy grin at me. My breath catches in my throat. What was crooked is now straight. What was ‘broken’ is now fixed. And, to my surprise, I miss it.
We rock and rock, until they ask to move us. A still spot in a moving picture. Just me and my boy, and the heavy bags at my feet.
