I am so good at clearing my son’s airway that I am like Sam-I-Am in Green Eggs and Ham. I can suction on a train. I can suction in the rain. I can suction at the zoo. I can suction, why can’t you?
When Lucas was a baby and got the trach, I could not have imagined this kind of ease. But after eleven years I can now suction with one hand to keep my son breathing while repositioning his iPad with my other. I can suction saliva to clear his mouth while talking on the phone to schedule more appointments. While silencing a ventilator alarm. I can suction a tracheostomy to the right depth in the dark of night with the lights out so he can stay asleep.
We inhale when we’re born, then breathe and breathe and breathe until one day we exhale our final breath.
I meditate by anchoring my attention to my breathing—returning my skittering mind again and again to the cool sensation of air entering my nostrils, the warm air blowing back out. Or I feel the rhythm of my breath like small waves lapping at the shore of the beach. In and out, in and out. I anchor my attention to the feeling of breath in my body as a neutral force, one I can take for granted, one I can count on forever.
The mechanics, the physics, the organs and tissues of breathing function with such perfect, delicate balance. So many things—a virus, an allergy, or the variation of a single muscle protein’s genetic sequence—can disrupt our easy flow of breath.
When Lucas was born, we didn’t know why he couldn’t draw a full breath on his own. The doctors immediately started puffing newborn-sized breaths into his mouth and nose. Since that first breath, that first puff in, he has needed breathing support. Ventilation, they call it. “Patient needs ventilation.” At first, he was a tiny, intubated baby, much of his face covered in medical tape securing the breathing tube snaking into his mouth and down his throat. When he was two months old, doctors convinced us to let them cut a hole in his throat and insert a more secure and permanent plastic tube: the tracheostomy. Despite our initial resistance to the surgical procedure, we would quickly come to refer to it in the familiar: “Lucas has a trach.”
We learned to pass a plastic tube thinner than spaghetti into his mouth or down his trach to clear his airway, first with a quiet, hospital-grade suction machine, then with home equipment with an engine as loud as a blender. We learned not only how to clear his airway—or resuscitate him if we didn’t clear it in time—but how to do this in public, like we were applying a bandaid. When clearing his throat, we ignored the stares at farmer’s markets, at the library, at doctors’ offices— pushing open his lungs, waiting for the color to return to his face. Every day we kept our baby breathing.
We think our lungs are filled with air, but around that air is wet lung tissue. When we exhale, we maintain some air, called residual volume, in our lungs. Because if you exhaled all the air, one side of your lung might touch the other, and your lungs could stick together. “Like sticky plastic wrap,” the doctors told me when Lucas had a collapsed lung in the NICU. “Once the lung sticks to itself, it doesn’t want to let go.” To reopen lungs requires more force than a standard breath. A person born with weak muscles might be unable to draw that kind of breath. If you were born with a rare neuromuscular disease, if you did not have a machine pushing the right air pressure into your lungs, that sticky breath could be your last.
As Lucas grew, the emergency trach suctioning and resuscitative breathing became less common, but we still regularly have to use the loud machine to clear saliva out of his mouth. Since his body requires him to lean back in his chair, since he cannot swallow, the saliva that pools in the back of his mouth could slip back into his lungs, choking him like a mouthful of lake water. Mouth suctioning is another form of keeping his airway clear.
When Lucas is eight, I take him to see the Seattle Symphony. As we settle into our booth I feel the stares and heavy sideways glances from the velvet-clad ladies seated near us. I have never been very good at breaking the rules or making other people uncomfortable, despite the Question Authority bumper sticker I put on my first car, despite the fact that I know important change comes from shaking up the status quo. From making people uncomfortable.
Although part of me knows we have a right to be here, that we are not breaking the rules, I also know that every time I turn on our loud machine, they hear interruption. I am sure they aren’t paying enough attention to truly see us: a parent who has kept her kid alive and a bright, music-loving third grader. They don’t see a mother who solo-navigated loading her son into their wheelchair-adapted van, who trekked downtown alone because her partner is home with their baby, who pushed her son’s wheelchair into this concert hall with utter determination, but who also carried in so much anxiety. They don’t see her hope that her son doesn’t need any major medical care in the next few hours, that his chair will fit into a crowded women’s bathroom if she needs to pee, that she doesn’t spill his green food all over her black pants while tube-feeding him in the dark, that she hasn’t forgotten any of the emergency supplies, that the power on their backup ventilator battery doesn’t fail.
In the summer I swim in the lake near our house—a giant lake, which gets deep quickly. The depths turn black beneath me and I imagine sea monsters or shipwrecks leagues below. I used to think that practicing water safety meant swimming with a friend, but then one choppy day when I opened my mouth over my shoulder to inhale, the lake rushed in. When the gulp of water hit the back of my windpipe my body convulsed. Panic jolted through me as I gasped airless breaths. I could not summon the strength and calm to cough up the lake water to make room for the air. Without time to form the thought into words, I knew how quickly I could die. Right there. A half mile from home, a hundred feet from shore.
Without breath, I could not force my arms to swim me to the beach where I could flop myself onto dry land to puke or pass out and then recover. For that long moment, I felt sure I would go down with the sea monsters.
Lucas and one of his homecare nurses have developed a code for the glob size of phlegm that we suction out his trach. The smallest they call “mackerel.” This is the clear snot from his airway which flows easily through the clear suction catheter. The next size up they call “salmon.” This mucus still flows when pulled, but it is sticky enough that you can hear a halting in the pull of the suction, the sticky resistance on the way out. Next up are the “orcas,” huge and fierce. Often, after we fish out one of these, Lucas instructs us to go back again, saying, “Let’s do one more to check for mackerel that stayed behind.”
The blue whales are the ones we hope to prevent, the giant boogers that clog everything. They won’t go through the catheter; they fill Lucas’s trach as we haul them up and out, hanging with the consistency of sticky jellyfish. These can get stuck halfway and completely block his airway. These demand a trained parent or nurse nearby at all times. These mucus whales almost killed him when Burke and I left him home with a new nurse, when she panicked and forgot the airway-clearing protocol. These turned him blue and stopped his heart that day when he was three years old. He doesn’t remember, but his body does.
My body does.
The Seattle Symphony conductor enters from stage right, bows to polite applause, then lifts his arms to begin. I try to wait for the loudest crescendos to do the suctioning, but sometimes Lucas can’t wait. I feel smug disdain scratching at the back of my neck from the people behind us. I can’t hear them, but seated at our angle, I see them out of the corner of my eye. They point at us and whisper. I summon all my powers of meditation, of focus, to try to ignore them. I remind myself: We have the right to be here. The symphony donated these tickets to an organization for disabled people, so they knew who they were inviting.
I can’t block the ladies out though. I notice one of them get up and walk out with determination that does not seem like it points her toward the restroom.
These days, when I am annoyed with Lucas for demanding we queue up his playlist in the car before I even have time to buckle my seat belt, or because he won’t focus on his homework on Marcus Garvey, or because he keeps saying he needs me to turn his head or adjust his body when really just he’s bored with math, I forget for a moment everything we’ve been through. For a suspended second we are just another family arguing about who chooses the road trip music.
I am grateful that now I often forget. With his big kid body that has grown into a larger trach, and with his adolescent body awareness that helps direct his care, we have moved on from the time when Lucas regularly experienced that whole-body terror of not being able to breathe. There were so many days when he was little that we cleared his airway, then pushed air desperately into his body, restoring him from gray-blue back to pink. Burke and I, moving with the forced presence and precision of a surgical team, kept our baby alive one more day. Today I almost revel in the small annoyances. In taking his presence for granted.
Forty minutes into the two-hour concert, I decide we’ve had enough. I tell myself that I don’t actually like classical music, and that it seems Lucas isn’t interested either. I stand up from my chair and back out of our box, pushing the door open with my hip so I can haul Lucas and his wheelchair and our bags of medical equipment backward and out into the hallway.
Two ushers in black pants and gray vests appear, coming for us before they realize that we were already leaving. “We feel so bad,” they say. They start to say more—about moving us to other seats, about being “so sorry.” When I realize what they are saying, I want to disappear. I want to evaporate, to escape their pity as much as the entitlement back in the theater. I stammer that we were just leaving.
I feel myself resisting the urge to run away from them, out to the foyer and the elevator and the parking lot and into the safe space of our own van. I want to be back home where Burke will help with all the medical care and make some wry joke that will help me put all of this into perspective. Who needs the symphony when we have so much classic rock on vinyl? I want to retreat to where we have everything Lucas needs, back to our home which we have adapted to his body’s needs. I want out before my small, hidden tremble of rage flies out and screams more disruption in this soft-carpeted, sound-dampened hallway.
Lucas is now in the eighth grade. Last week he came home from school and instead of immediately getting down to rest on the couch, he asked to stay up in his wheelchair to play his favorite online game. An hour later I went to help his nurse lift him from his wheelchair to the couch, and I could hear his trach rattling with mucus.
“It’s going to be a big one,” he warned without worry as we lifted him, laying all five and a half feet of him onto the couch. He has come to know the feeling of small phlegm and the danger of a bigger glob of mucus. He can feel the difference and warns us so we can get the emergency supplies ready. Or in this case, he can postpone telling us because he thinks it won’t be serious. So we won’t interrupt his game.
That day at the lake, I talked myself into relaxing enough so that breath eventually returned. I treaded cold water and breathed in full, delicious gallons of air.
I now swim with friends, or I swim alone, but with an inflated, orange plastic float bag tied to my waist. It is not high fashion. But during the pandemic, when so many swimmers lost access to pools, in Seattle those swimmers took to the lakes. These new-to-open-water swimmers arrived cautiously. Now on early summer mornings I see the lake dotted with fluorescent bags trailing beautiful arms, gliding along the lake surface. But even if I were the only one, I am still happier swimming now when I know I have something to hold me up if suddenly I can’t breathe.
As we move toward the symphony’s main exit doors I want so badly to run for the van. But I’ve been doing this long enough that I remember: this is not just about me. I am learning to tolerate awkwardness to advocate for my kid. And the kids who will come after us.
I hold tight to my righteous anger. I think, Someone felt they had more right to a medical-noise-free symphony than we do to even be here.
When we are out in the freedom of the grand and empty main lobby where I can pause and breathe, I ask an usher if I can speak with the manager. Lucas and I wait by the livestream video of the symphony, which it turns out he likes better than being inside anyway. With his visual impairment, rolling right up to a big screen projection is much easier than straining to see musicians fifty feet below.
A few minutes later the house manager appears. He is gray-haired with perfect posture, and he cocks his head slightly to listen. I have gathered myself enough to explain that our noise was medically necessary. That I understand it was loud and maybe disruptive, but that Lucas should have a right to see the symphony.
The manager nods and I am surprised to hear him express his deepest regret. He moves his hands in small, definitive gestures that somehow reassure me that he is genuine. Of course we had the right to sit in our assigned seats, he says. That is the law, and they are proud to welcome people with disabilities to the symphony. If someone didn’t like our noise, and there was another seat available, they should be moved elsewhere. Not us.
He promises that he will give another orientation to all his ushers, reminding them of our rights. He apologizes so much that I offer to turn on Lucas’s suction machine so he can know how noisy it is. Part of me can’t believe he could actually mean what he is saying. That he could be so fully on our side. I flip the machine on, and he listens and shakes his head. Even though the suction machine sounds like a small chainsaw, he says “No, no. That’s fine. We have people with oxygen concentrators all the time. That is no louder.”
Now I want to cry again, this time from the relief of being seen. Being welcomed. Maybe this man is disabled, I think. Or he has a family member who is disabled. Or maybe he just gets it. Maybe he simply cares.
I push Lucas to the elevator, to our van, exhausted, but also proud. I took my kid to the symphony. I stood up for my kid, and he got to see us win.
I can suction while gathering my spirits, while holding out for my son’s right to exist, to be present, to take up space, to interrupt “usual” life. I can suction while pulling out the van ramp, while operating the wheelchair tie-downs in the middle of the van. I can suction with my left hand on the steering wheel and my right hand reaching back over my shoulder while driving my beautiful, breathing child home.
Rumpus original art by Ian MacAllen