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Girl Gone Authentic: On Breathing

CW: This post was written over the course of several months, and it took all those months to write. It contains many medical references and death, and it is deeply personal. Please read with caution and grace.

The boy in the room next door is dying.

There’s a bathroom here that we share. The nurse and I walk in with my daughter, she’s too wobbly to go alone, too embarrassed to have a nurse clean her up. Through the door, I hear singing and chanting, hushed weeping. My heart catches. We take my daughter back to bed, reconnecting her wires and tubing as she scrawls on her little white board. The nurse takes the left side, I take the right. She holds up her board insistently. What is that? The nurse and I lock eyes. They’re praying, we say, and no more.

The boy in the room next door is dying. I look at my child. I think of his mother.

My daughter’s tumor was removed yesterday. A surgeon cut through her lip, sawed through her jawbone at the chin, moved her carotid, wove deftly around her nerves and saved her life from a nearly symptomless, silent and impending doom. With it, he had to take a large portion of her vagus nerve. Her voice will never be the same, she will have new disabilities, but she will live and live well, her surgeon promises. I am holding to that. Three days ago, my daughter was leaping joyfully from her uncle’s kayak into their favorite lake. He took a picture of her mid-air, the sky her limit. As I write this, she is lying in front of me - a drain in her neck, a tracheostomy helping her breathe, a feeding tube in her nose. She is swollen, exhausted, unable to speak and swallow. These functions, we trust, will return. We are, so far, fortunate.

The boy in the room next door is dying.

My daughter has sung songs with me for as long as she could make sound. Music lit her up inside. I have recordings on my phone of my four year old girl, wailing a heartfelt Ruby Tuesday against my clunking strum of a ukulele. My daughter sings all day, sings herself to sleep at night. For a decade, my life has flowed on in the endless, endless song of a small, sweet lily girl. This is different now and always will be. On Tuesday she said “I love you, too, Momma” and we both cried as she drifted off to sleep in the OR. I will never hear her unaltered voice again. My name was the last sweet word she placed on her tongue, the last one she uttered with her full sound. I ache. I think about George Floyd, calling out the same. I think about Breonna Taylor’s mom. Why are we spared, my daughter and I? I will never understand. I hold it with me.

The boy in the room next door is dying.

I catch myself singing while I tidy up the room. Sometimes she likes it and dances a silly dance from the bed. Sometimes her eyes catch and I silence myself, because we both know she is silent for now, and we don’t know if she will sing again. Today we sit quietly, my chair close to her bed, my arm resting against her leg, reading books - a pleasure we can still share. Three Wishes for me. Snapdragon for her. My husband has just left for the night, a quiet day. I’m breathing more now, the OR three days behind us, the ten timeless hours of waiting finally spent, the first window of complication risk closing behind us. I’m engrossed in a sordid plot, close enough to notice everything. Out of nowhere, her leg is shaking and I look up. Her face is bright red. It’s clogged, the trach is clogged. She can’t breathe. She is panicked. I am, too. I hit the call button, I yell for help through the door intentionally left open, and help comes. Our nurses do not panic or despair. They move expertly, grab the right size catheter, it looks effortless. It’s ok, they reassure us. Her sats never drop, the clog is cleared.

She is fine. It happens sometimes, the nurses say. It’s ok. We tremble a little, we go back to our books. All is well except her eyes, because her eyes locked with mine and she thought she was leaving me, and in her eyes I could see her, I could see her calling for me. Momma. Momma.

The room next door is empty now. I stay upright and calm as my daughter carefully walks the hallway. She doesn’t need to know, I think. She knows too much already.

When she falls asleep in the room that night, I weep silently in front of a glowing laptop screen. I write these words. I try to breathe.

In the days and weeks that follow, her recovery is complicated and slow. She gets pneumonia. She isn’t swallowing. The g-tube will have to stay much longer than we hoped. I nod. This doesn't worry me. But then.

They talk about changing her goals, going home with a tracheostomy. My body revolts and I tell them this can’t happen. I don’t totally know why, I just know this is not right. She is constantly uncomfortable, she is miserable. I have to clean her up well over sixty times each hour, it weeps fluids profusely. It’s ok, they tell me. It happens this way sometimes. But it isn’t. It isn’t okay, and she can’t have a good life like this. I know in my body it’s wrong, I know there’s something wrong with it. I know it so deeply that I fight back the urge to pull it out myself. I ask every friend I have who works in nursing what they think. Go with your gut, they tell me. It doesn’t sound right. I call my cousin. I will die if this doesn’t come out, I tell her. It’s so wrong, it will kill me, I cry. Yes, she says. I understand. Fight for her.

So I do. I tell everyone who will listen, I try every angle. I beg them to consider what I’m saying, that it isn’t livable in this condition, that it’s poorly managed, that something is wrong, that this is not an acceptable quality of life for her, that I can’t keep her safe at home and meet her brother’s needs. I talk like a professor, like a student, like an activist, like a maniac. I find myself weeping, shouting, pleading. They keep trying to convince me. So I tell them I tell them I simply can’t do it. I will not bring her home like this, I say. You can not leave it there. This can not happen. I won’t be reasoned with. I am becoming a problem. I make myself a problem.

The mother can’t accept it, I hear them say. They talk to my husband about me. He speaks to me gently to help me understand. I rage at him and am betrayed. I shake at night thinking about what they all think of me. How could I know better than these incredible doctors who saved her? I wonder if I have really lost it.

But they are right, I can’t accept it. I won’t. I don’t. I am not “the mother”. I am my daughter’s momma, and I know. It has to come out. I can not let it go. They can all think I’m crazy, they can all think I’m in denial. There is something wrong with it, I insist.

And I’m right.

A speech pathologist hears my angst. I wonder if she’s only appeasing me when she tells me she thinks I might be right, that she wants to see it, too. I’m grateful either way. She gets a swallow study done. I see it immediately and wait for someone to finally confirm what I know, and they do. The trach tube is too big, blocking her whole airway, irritating her constantly, keeping her raw and bloody inside. They size it down, and that night I breathe and sob with relief.

Within two days, she hits every milestone we had anticipated would come within the early days after the surgery, ones we had gone fearfully for weeks without seeing.

The trach comes out. My daughter comes home. And I thank the wind and the stars and the waters and the infinite space beyond that I am her mother, crazy and difficult as I might be.

When you go through hardship, you hear a lot of people tell you they can’t imagine what you’re going through. I’ve said these words myself, so many times. The thing is, I can’t really imagine what we’ve been going through, either. It felt and still feels like a strange dream, one I could almost forget if I didn’t see it on my child’s face every day, if it didn’t linger in her new soft, squeaky voice. I’m not sure I will be able to truly comprehend that this happened to my daughter, to my family, to us. Months later, what we lived through hits me in waves. I find myself in an ocean of grief, of fear, of relief, of guilt. I find myself looking at my child and knowing in my soul she was meant to be here, she belongs here. Every mother feels this way. Not every mother gets to live it.

There is no good reason my daughter is alive when other mothers' children are dead.

Some of this is pure luck. It’s luck that her tumor wasn’t cancer, that it could be removed. It’s luck that my daughter was born to me and not to my own mother.

A lot of it isn’t. There is no good reason that she was positioned to survive - that we had insurance, that we can afford to live in an area so close to a huge city with access to phenomenal medical care, that her life was valued when others are discarded and spent in the street as though they were nothing, as though they weren’t precious and beloved, too. There is no good reason why. When we ask the question honestly, we can only find injustice as the answer. This can not be.

A beloved and brilliant friend and mentor used to say the world is unfair, and we often find it to be unfair in our favor. So it is, and so it has been for me. But I can’t live with that either. I can’t live with it any more than I could give up and let go what I knew to be true for my own child. I know so many things can be different. I know that they have to be. And I will continue insisting on it, I will make myself a problem if I have to, until every mother can breathe and sob with relief. We can not make the world truly safe, not for ourselves, not for our children. I know now that is only a temporary state, and that it can shift at any time. But we can make it a world where human beings are cherished, where predictable, preventable death doesn’t separate mothers from their children every day. Let it make you a little crazy if you have to. Be difficult. Don’t let it go.

Sometimes, that’s what it takes.

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