Part Three (iv of v): Tabatha, and other scenes

August 19, 2013 Comments Off on Part Three (iv of v): Tabatha, and other scenes

Tabatha

At some point we started to notice this person who shared our movements, or at least our routine to some degree. We’d see her in the waiting room at times. We’d share an elevator, pass her in the hall — a natural extrovert with a beaming personality and a winning smile, always smiling. To see her is not to know her, not exactly, but to want to hang out in her world for a time. Missus and I comment to each other how remarkable she seems even before we know who she is, why she’s there.

We meet her soon enough, trudging away together from the NICU and making toward the parking garage at shift change; plenty of time for the light getting to know you stuff, heaven knows. She’s Tabatha. She has a days-old son, her only child, who has been on a ventilator since birth. He was born with a rare disorder that impedes normal muscle growth. The doctors don’t know very much about this. They’re still finding out about it; it’s that rare. He was born without the implicit strength it takes to breath in and out and the innate, cellular ability to acquire that strength. It only takes hearing this to know that you’re speaking with someone standing on quite another plane from where you are.

And there she was: The person we knew was out there; the one we knew we’d meet. One who had not only been given a worse prognosis than our own, but about the worst possible. There, of course, were other babies, other moms, dads, other stories in this hospital, on this floor, in this NICU; no doubt a large hospital is rife with them. But we wouldn’t meet these others. We would meet Tabatha. And while we wouldn’t come to know her well, Tabatha would become our touchstone, our almost daily reminder of the reality that ours already was a success story.

You’d see Tabatha engage nurses outside the building, they walking in to work while she was leaving for home. She’d stop them like they were old friends. You’d overhear her tell them, “We got a diagnosis today,” and then you’d miss the rest because you had to keep walking. You’d see a doctor walk up to Tabatha in the waiting room after some test or procedure and you’d hear her say with a tired smile “How’s ma’boy?” in an near-playful way, as one mother might ask another over the telephone, checking in on her shy little man, away on his first sleepover. You’d comment to her about her smile, and how it’s always so present, and how inspiring that is. She would say Thank you and offer, almost in jest, “I cry at home.” And she says this like someone telling you that they add just a smidgen of tartar to their biscuits, and that’s why they come out just so – smile, wink — only she isn’t kidding.

I once saw Tabatha with her husband in the waiting room. It must’ve been a weekend. She’d explained to us that her husband worked at a small startup and that while his employers were being very supportive, it was understood that he had to work a lot. She was telling him that they took their son off of the ventilator for a short time that day to see how he would do. It was a big test. A big deal. It did not go well. She quietly told him that she never wanted to see that again, her head on his shoulder, and I see her for the first time more than a little subdued.

It’s possible that I never actually introduced myself to Tabatha’s husband. At least I don’t remember that I did, and I feel like I only saw him the once. The time I saw him I was sitting in the waiting room by myself and they were in there too, among family. He’s like her: tall, gregarious, and as I watch them interact I’m thinking to myself “this guy’s doing it right.” Whereas I go around on edge and butting heads with people this person appears almost at ease, like he’s in the stands at a baseball game. Just a day with family. And then I get it.

He’s being strong for his wife. His being at ease puts her at ease. He goes to work every day. Has to. He grinds it out at work while she grinds it out the hospital. This is their arrangement, their predicament. Is it easy? Hell no. But he wears his big boy pants, wears them well, and he makes his wife feel good that they’re together, when they’re together. And this time most certainly is about her. “Don’t forget that,” I say to myself. I pat myself on the back a lot for being a good husband and dad and then I’m watching this guy – works every day; may or may not bring his son home from this awful place – and not only is he doing it better than I am but he’s killing it. A good and overdue check to my ego. So probably I was too intimidated or ashamed of myself to initiate an introduction, but that’s how it is.

{ Side note: On Work }

I went to work it must have been ten or twelve days in — about the time I accepted and understood that there was no way of knowing how long Lucy would be in the hospital. I go past St. Elsewhere on my way to work so I parked illegally in front of the hospital and went up to the NICU at about six in the morning. It didn’t seem right to drive past and not go in. I bribed my way past the desk nurse with a large travel container of coffee and I scrubbed quickly and went in to see her. I spoke some with the night nurse, close to the end of her shift, and asked her the questions, the same two questions I called to ask each and every morning before we drove in. I leaned over her bassinet and whispered things to her, prayed with her – no need to pick her up and disturb her sleep – and then I kissed her and left. Had to make it quick because I wasn’t supposed to be in there.

I got to work and did my best to act normal. The people I work with asked all the usual questions, offered their congratulations. Some of them had seen the updates I’d posted on Facebook (easier than picking up the phone and calling all your family members) and were surprised to see me there; some of them hadn’t. The ones who had tactfully asked the questions, making small talk. Yeah, she’s still in the hospital, it’s going to be awhile, no big deal. Down syndrome, yes. Yes, Missus is doing much better now, thank you. She was discharged after only three days, unbelievable. A warrior. Yeah, lost a lot of blood. Scary. Yes, yes. Probably sometime in the fall when she gains some more weight. Open heart, yes. We’re still learning about it.

A few hours into my shift I called a station on the phone, sort of randomly, and got a familiar voice. I didn’t know who was on duty when I picked up the phone but it was my old crew, at my home station, and the familiar voice was a man I’d worked with for years once upon a time, and who had, among others, sort of mentored me: An old hand and one of those cranky, hard-headed, fifth or sixth generation Tex-Germans. As best I can remember, this was his side of our short conversation. He speaks in a low, gravelly Texan drawl.

“How’s that baby, boss?”

“How’s Momma?” (he means Missus, of course)

“You need anything?”

“What’chew doin at work, man?”

“You got sick leave, dontcha?”

And that was all it took. I thought to myself Dammit, he’s right. I do have sick leave. I do have vacation. I’ve got plenty. My employer is a big city emergency service department and there are a thousand of me. The city doesn’t miss a beat when I don’t show up and work doesn’t pile up, either. This is when I reconcile that any time one of my kids happens to be in an intensive care unit, and any time I have the physical and financial ability to be there too, then that is where I will be.

An hour later I was back beside Lucy’s bassinet and sort of sheepishly greeting my father-in-law, a retired small-town postmaster and Marine whom I think the world of, and who, I figured, probably wouldn’t get it: how I could be away from work so much. I explained, unnecessarily, that I just felt I needed to be there. He reassured me, hand-on-shoulder, that it was only when money wasn’t coming in and bills weren’t being paid that not being at work was a problem, which was not the case with me. So I had his blessing too, and again felt justified in my decision.

Obviously, I couldn’t have stayed away from work indefinitely. And while I had leave saved up, enough to weather something like this, I don’t know that I would have exhausted all I had – you’ve got to keep some in the bank for these emergencies.

While my employer hasn’t changed, presently, I don’t have my cool, masculine job. I hold down a chair. I also went nearly twenty human Earth years once without really thinking about sports, so while I may not have the Man-cred to say something like this I’ll say it anyway:

Guys, if you’re going through a family crisis, don’t get caught up in the macho, male-ego “I gotta be workin” bullshit. By all means, pay your mortgage, feed your family, work so you can pay those medical bills. But if you’re blessed, as I am, to have the kind of job that affords you the ability to be present and with your family in the midst of a catastrophic event, then you have my blessing — you have a hard working, ex-Marine and retired postmaster’s blessing; you have a square-fisted, workadayTex-German fireman’s blessing — to use your leave and spend it with your family. Just spend it well, think about guys like Tabatha’s husband who can’t be there like you. Wear your big boy pants to the hospital, put your wife at ease, and be grateful. Do these things and you won’t be cheating anybody. End of soapbox.

(Tabatha, cont’d)

We don’t know Tabatha. All we know about her and her husband is what’s been said here, and that she had been working at one of those probably adorable and trendy Austin bakeries, and that they specialized in all-natural goodies. She told us she didn’t know whether she would go back to doing something that to her seemed in-a-way frivolous now, after what she’d been living through, so grave, so far from over.

We didn’t keep in touch. I regret it. To this day we have no idea whether she and her husband brought their son home on a ventilator or whether they brought him home at all. While Missus and I are not exactly reclusive or unfriendly, neither are we exactly the kind of people that go out of their way to make new friends. We’re boring like that. Comfortable in our rut. I wish we’d checked in on them, stayed informed, offered some support. When our discharge papers were finally signed we didn’t ask questions and we didn’t look back. I wish they knew how they affected and inspired us both. Short of that, I just wish we could hang out in their world for time. I hope it’s more peaceful there now.

Other Scenes

On the day Lucy was moved to St. Elsewhere I came into the room and found Missus fighting back tears, speechless. I gathered that our we’ll-just-say “seasoned” nurse had been handling Lucy, maybe trying to change this or that, and in a brut effort to position her or keep her still had slammed Lucy’s little head down onto her bassinet. By the look that was still fresh on Missus’ face it must have been pretty abrupt. Lucy wasn’t in distress, so I didn’t know where to go with it. Honestly, I probably reasoned out of pursuing it by telling myself that it must have sounded worse than it was. The problem with this logic is that, historically, Missus doesn’t overreact. Again, I should have stepped up to the plate, if only to back her. What bothered her nearly as much as seeing her baby’s head bluntly knocked around that way was that the nurse’s play was to not acknowledge what had happened. Didn’t say a word. Went on about her business and left the room.

_____

St. Elsewhere is very much a pro-breastfeeding outfit. It’s all over the walls of the labor and delivery floor, in the NICU also. Missus is trying her best. It’s going about as well as it did with our first two, the breastfeeding, which is not great. It just doesn’t seem to come out and she was transitioning to the pump. One particularly helpful lactation nurse was certain that she could alter this course. Whereas the other lactation nurses would talk, ask questions and offer suggestions from a relaxed position on the other side of the room, this woman was of a different school and methodology entirely. This lady played offense. I excused myself from this session, an environment I felt I had no place in. It was getting handsy. Missus later recounts the experience for me, wiping a solitary tear, laughing or crying it’s hard to tell which. These were her words:

“She milked me!”

_____

Late at night, possibly early morning: I stand beside the bassinet witnessing for the first time the nightly bathing ritual. Performing the ceremony is an elder, street-weary, dare-I-say weathered night nurse with something like thirty NICU years on her face. It was like watching the individual workings of a cog in a vast and vintage instrument of war. In every way she performs the task like someone working on a line. Pan out and there might have been thousands of her standing shoulder-to-shoulder, each of them a working widget in a giant factory where all the babies of the world are bathed. All there lacked was some sort of lever coming down from above for her to jerk periodically. I waited for a whistle to blow, expecting that, hearing it, she would abruptly halt action, mutter something about a cigarette, and laboriously trudge off to a waiting cup of strong black coffee, not particularly fresh. A union break. It was difficult to watch. It felt a bit like seeing the sausage made.

_____

Tabatha in repose: On the floor outside her little patient’s room, back to the wall, knees to elbows, head in hands. Hair spilling through her fingers and down nearly to the floor.

_____

Shortly after our arrival at St. Elsewhere we stand around Lucy while one of the doctors performs some sort of inspection: Missus and I on one side of the bassinet, Supernurse and a doc on the other. Lucy is squirming and Supernurse says something about a pacifier. I offer that Lucy doesn’t seem to favor them. Neither of our other two daughters took to them and up to that point Lucy hadn’t either; hadn’t really needed any self-soothing since all she did was sleep and eat. Supernurse found something to give her – a pacifier or maybe it was just her gloved finger – and as Lucy’s mouth went mechanically to work, calm and still now, I receive the full and direct, victorious stare of Supernurse, her head slightly tilted. It forgivingly speaks these words: “You see? You have only been doing it exactly wrong all this time. That’s all right. You didn’t know.”

_____

At a point where Lucy’s breathing is no longer a concern, tube feedings are an accepted reality, and growth is all that is being monitored, we are moved out of our isolation room in Bay 5 and over to Bay 7. Bay 7 is where the noncritical little patients are monitored and we celebrate this; we celebrate this as both a literal and a figurative giant step toward going home: the entrance to Bay 7 is only ten feet from the entrance, and EXIT, of the NICU.

We only celebrate for a minute. As we We size up our new environs we realize that we’ve moved from the plush Hilton on the hill to the Budget Inn on the interstate. Our private nursery is already a fond, distant memory and we are now in general population, eight feet from the next bed, only a thin green curtain on a ceiling-mounted track for our privacy and self-enclosure. And here is where we’ll be. Until.

_____

Tabatha seated alone in the cafeteria. She receives some kind of flower daily and today keeps it with her at lunch. She will sometimes come dressed, other times dressed for comfort. Today she’s made the decision to dress and dress well; she’s done her hair and looks radiant, the way women do when leaving for vacation. She might have been sharing an early cocktail with her husband at an airport lounge, flipping through magazines, no visible care in the world. Seeing her there, seeing the placement of the vase, it’s as if he’s beside her now, seated at her elbow.

(Thank you for reading. Please check back next Monday, August 26, for the next installment. If you appreciate this, consider making a small donation to the National Down Syndrome Society in Lucy’s honor via the Lulu & the Lettuce Patch image on the sidebar. Also, any social media sharing or activity increases the likelihood of this site finding its audience, so your generous clicking is greatly appreciated.)

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