A tale of two trachs

Photo by Donn King

If Jay Allison ever sees this story, he may think, “I can’t believe I’m still hearing from this guy.”

I’ve written to Jay a couple of times over the years. He’s easy to find on the web because he has done such great work in public for National Public Radio, This I Believe, Public Radio International, Atlantic Public Media, and hundreds of other places. But I first read his work early in his career, and most of those pieces lay in the future.

I no longer have the issue of Whole Earth Review in which I stumbled across his story “Vigil,” but it remains available on his website. It’s a model of personal journalism, specific, concrete, showing rather than telling, putting the reader (me) right into the scenes he describes about the experience of taking their two-year-old daughter, Lillie, to the ER and not coming home for a month.

When they brought her home, she came with a new accessory, a tracheostomy that allowed her to breathe, a life-saving device needed because of an attack of croup. The article (they weren’t called “posts” back then) describes specific aspects of taking care of a two-year-old with a trach, connected to a pulse-ox monitor.

Woods Hole. Midnight. I am sitting in the dark of my daughter’s room. Her monitor lights blink at me. The lights used to blink too brightly so I covered them with bits of bandage adhesive and now they flash faintly underneath, a persistent red and green, Lillie’s heart and lungs.

Words reach across time

Over the years as I read the closing paragraphs of the article to my communication studies students, both budding journalists and emerging speakers, I never failed to choke up when I reached a key part. I am choking up now just remembering those days.

Lillie is turning blue. She begins to relax, an awful relaxation. Time rushes at a crawl.

I can no longer read it to my students, though. I can’t even get started with it. That’s because 14 years ago I joined the ranks of parents he describes. Lillie must be close to or in her 40s now, and thank God she was able to have her trach removed and go on to (I assume) a normal life. Jay was kind enough to reply to an email from me a decade or so ago when I inquired about Lillie, and I think I remember that everything was basically OK.

Photo by Donn King

My own daughter will have a trach for however long she lives. She has a very rare chromosomal disorder that causes severe neurological problems. Hannah can’t sit up, walk, talk, feed herself, or even close her epiglottis when she swallows. Because of that nothing has passed her lips since she was a year old. If we gave her any food orally, it would go straight into her lungs. A feeding tube provides her nutrition.

She connects with me with her eyes when her anti-seizure medicine doesn’t keep her too drowsy, and if I dare call her (my 14-year-old adolescent daughter) my baby, she rolls her eyes the way any 14-year-old girl would. Otherwise, she has only ever been able to communicate via eye blinks. When she doesn’t respond I don’t know if she is zoned out from the meds, is asleep (she sleeps with her eyes open), or is ignoring me (as I said, she’s 14).

We have no idea how long she will live. It could be months, or it could be 80 years. Through all this time, though, I have remained connected to Jay Allison and his insights, his vivid picture of his experience, and the pain of loving a child so much while being so helpless in the face of a medical challenge.

Reality can be really real

I know he felt that fear that all parents do, the fear of losing a child. I feel that fear constantly for Hannah, especially since her 32-year-old brother died suddenly 54 days ago from the effects of flu on a body already racked by renal failure. I do not have the luxury of living under the illusion that everything will turn out OK.

As I write this, I am in Hannah’s room. The nurse who was scheduled to care for her today just didn’t show up—we have no idea why—and it falls to me to fill in since my wife is also disabled. Hannah’s pulse-ox monitor flashes with the same sort of red and green lights Jay described, along with the incessant beeping that alerts me to changes in her heart rate, an indication of when she is sleeping or seizing.

Photo by Donn King

We had to do an emergency trach change just last week of the sort he describes (seriously, go read it when you finish this), and it has become so routine that I no longer feel it when it’s happening. I just shift into crisis mode and run through the familiar steps, ripping the obturator from the sealed bag that hangs on the wall above her bed, slipping it into the trach to give it a “backbone,” and sliding it into the hole in her neck with a sort of rolling motion that accounts for the curve, positions it toward her lungs and gives passage to the air she needs to live.

When the moment passes, I go somewhere quiet for a bit, and I feel all over again what I felt reading his description written long, long before Hannah was born. I never thought I would be living it instead of reading about it.

A lifetime impact

I don’t know how much longer Jay will be doing what he does. I know he was receiving awards for his work when I was in college, and I am nearing retirement age myself (though I doubt I’ll ever be able to retire). Jay has a lifetime of awards and accolades reflecting a high level of skill, commitment, and service. He has impacted thousands, maybe millions, of people. He could not have known how much his article would impact one person reading a quirky magazine way back when, and I suppose in the grand scheme of things it doesn’t much matter. But he not only became a model for me in professional practice as a writer, speaker, and teacher. In ways even I don’t understand he prepared me to have the grit to carry on when I was blessed with this odd, rare little life that is mine to care for, and when I lost another little life who was still my baby boy.

Thank you, Jay. Give my regards to Lillie.

UPDATE: I heard from Jay after posting this. Lillie is actually younger that I worked out, early 30s, doing well, married, and has a son — who has croup, which makes her edgy. I am glad to hear “the rest of the story,” and hope you are too.

About the writer

Donn King helps you communicate confidently. He writes a lot, too, a habit he hasn’t been able to break for nearly 50 years. Join and support the Learning Community of Raconteurs with him on Patreon. Connect with him on Twitter, Facebook, and LinkedIn.

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