I went to see him today, and got a few good heartfelt interactions. Most of the time he’s hovering just below the surface of consciousness, bobbing up for brief periods when we rub his shoulders or play him some favorite music. He knows where he is and what’s going on, and while he’s uncomfortable, he says he’s not actually in pain. He can’t have many visitors, since his immune system is shot. His obvious pleasure in seeing people and hearing especially familiar CD tracks more than compensates for his being unable to finish sentences longer than 3-4 words. He drifts off mid-phrase, not really asleep, but definitely not awake. Most of what he does talk about are good things: love, family trips, memories and pleasures.

Even in his current state, he’s socializing with the nursing staff, recommending dance albums, and still charming everyone around him. In other words, he’s being exactly who he’s been for as long as I’ve known him.

He’s got both a raging cancer and a whopping big dose of chemo burning through him, nullifying what tatters remain of his immune system and keeping his blood components in the “terrible” range. The palliative care team is talking about hospice and seems clear that he’s winding down. His oncologist, who’s known him longer, is worried, but says there *could* be a very slim chance he’ll survive the chemo (and bacterial infections) long enough to see the cancer slowed down a bit … but it’s a very, very slim shot. His family is converging, and we’re all just enjoying what we can of the hours and days we’ve got with him right now. That’s the attitude I learned from him, after all.

We’ll have a better sense of any future trajectory for him if he survives through the weekend. I find myself reacting much the same way I did when I was at my low point with the GBS, and simply not thinking about the long term. The short term is almost too much to handle as it is.

I picked P up from her day care late this afternoon, whistling as I walk in the door. Any time I walk into a space in which Kate or Piper can hear me, I give the same little three note whistle I’ve used for years to announce myself — tonic, dominant, major-third. Piper hears this and comes excitedly running out to meet me.  She pauses for a second, looking past me for Kate before I explain that her mom’s at work tonight, and that we’ll be having dinner as a twosome. She’s psyched to head out, though, and so I gather the day’s masterpieces (unfinished raviolis in her lunch bag and a scrawled-on picture of a squirrel, HELLO JACKSON POLLACK) and bundle her into her purple coat.  She says goodbye to Emily, the afternoon caretaker, with a cheery “Shabbat Shalom!” — I’m guessing Piper is likely the only kid being raised by two Quaker parents who knows to say that on Fridays, but when you’re attending a day care named Gan HaYeled, this is perhaps unsurprising, and totally charming — and we run out to the car with a rain squall bearing down on us overhead.

We drive home, Piper pointing out stop signs and busses, and telling me when lights have turned green. We get a brief, blatting shower as we park, and Piper insists that she can hold the umbrella as we walk up to our front door … and she’s right. Holding it upright and going up the steps proves a challenge, though, so I take the umbrella down and we both burst in the door dripping. We marvel at the new couch and chairs, which showed up only this morning, and then I go to transmute several days of base-metal leftovers into one new golden meal for the two of us. Piper leans on the new couch, ransacks her room, rummages through some kitchen cabinets, and finally settles down on the kitchen floor to recite Maurice Sendak’s “Chicken Soup with Rice” to me.

Meanwhile I’m chopping up a shallot; some leftover cooked chicken from the batch we raised, killed and butchered this summer; and a bunch of broccoli. I sautée the shallot with some garlic, and Piper asks to smell the garlic.  Then she wants to smell (and sample) the chicken. Then she wants to watch me stir the rice in.  As I fetch out the usual bottles to jazz up the stir fry, she requests a taste of each and its name: soy sauce, mirin, rice vinegar, sesame oil.

We sit down at the table and I serve her a big scoop of the fried-rice-and-stuff; on a whim, I put a few drops of each of the four seasonings on her plate, too.  She spends easily the first five minutes of the meal dipping an index finger into each one. “They’re not spicy!”, she reports, before going back for many repeats on all four: especially the puddle of mirin, natch. Then she tries dipping pieces of broccoli into each one in turn and tasting them that way. Having finished her broccoli, she finally hoovers up the chicken and rice. That, I figure, earns her a little dessert, so I get out a frozen peach pop for her and prop the iPad on the table.

As she ate dessert, we video chat with the Massachusetts Hankins, who proudly display their Halloween costumes and play peekaboo with an amused Piper, who keeps proclaiming, “I’ve got a peach pop!”  Then, off for teeth brushing. Piper’s developed some occasional and (thankfully) mild resistance to helping out the tooth brushing process, but after a request from me to help her get to book-reading more quickly, she leans back and says “Ahhh,” all the while signing the ASL word for “help.”

Three decently long books, as Piper fitsherself under my arm: “How to be a Baby,” “Lots of Dots,” and the last story in “Owl at Home”: “Owl and the Moon.” I turn out the light and do the bedtime ritual, which begins with “What a fun day!” and a recounting of everything (that I know) she’s done that day, with especial attention paid to friends and meals. We talk about what we’ll do tomorrow, and then I ask her for a few of her animal sound renditions. Tonight she happily neighs as a horse and chatters as a dolphin; she laughs knowingly but won’t perform when I ask her about crows, and she giggles when I ask about whales, because that’s my cue to make the lowest rumbles and the highest squeaks I can. Then it’s serious business: what does Mama say?  ”I love you.”  What does Abba say? “I love you.” What does Piper say?  ”Dawa.” And with that, I ASL-sign I-love-you-all-time, wish her a good night, and leave the room.

And then go back to her door 30 seconds later to tell her that no, she doesn’t need any orange medicine. (the kid ibuprofen we use apparently tastes really good, but it’s only for actual tooth issues.)

And then I’m back 30 seconds later with a sippy cup of water, at which point I say firmly that we’re done and good night: I’ll see you in the morning, kid, and don’t call unless there’s blood, flames or flashing lights.

It’s not that any of this evening is particularly remarkable. It is, in fact, that this is a thoroughly typical evening that makes me want to record it, lest it be lost in a generally pleasant blur. It’d be way too easy to only jot down the screaming fits or the Calgon-take-me-away moments… but man, these kinds of gently curved few hours together make me astoundingly satisfied to be a father.

CODA

I wonder whether we’ll have these quiet periods of awesome when the second one comes along?

Almost precisely halfway to a second / Due March 12, 2012 Gender: unknown

And then Piper decided to wake up earlier than usual and demand the bottle of milk we’ve been denying her for 36 hours. We’ve been waiting to return her to dairy products until she stopped casually yakking up random bits of food and beverages, so giving into the hostage-taker’s demands and giving her a full bottle of warm milk while she sat in the middle of our bed felt a little like handing her a goldfish bowl full of grenades and live snakes and asking her to keep it upright.

I figured I’d treat everyone and make some quick pancakes, but because of Kate’s eyes, I kept most of the lights off and cooked by the faint crepuscular glow available, which meant that I was stumbling around the kitchen, too, while Piper pointed her hand at … something on the table, we’re not sure what … and yelled two syllables we’re hearing a lot of these days: “DA-WA!”

Unlike “GAT” and “TUCK” and “DOG” and “CAR” and “ANANA” and “BAH-BREES” and “SOX” and “SCHOOSS” and even “DAH-WOK,” all of which come from Piper with clear ASL signs and well-known translations (cat, truck, dog, car, banana, blueberries-for-the-love-of-god-people, socks, shoes and music, respectively), DA-WA has become a generic and oft-repeated entreaty for whatever she’s pointing to, thinking of, or has seen recently. Woe betide the slow-to-comprehend parent who can’t intuit what she means! Even those who, on two three-hour chunks of sleep neatly divided in the middle by an orange cat who insists on feezling his whiskers around one’s nose, mouth and ears while one sleeps, feel like they’re doing pretty well just to be vertical and not falling asleep in the pancake batter. Or on the stove.

Anyhow, there we sat, eating our breakfast in the near-dark, Kate wearing Matrix-style wraparound sunglasses and wincing at every photon and Piper demanding who knows what. A return to the gold standard, maybe, and a little goddamn comity in Congress. Me, I just ate four pancakes with grapes and almond butter and maple syrup and told Kate she was pouring soy sauce on her breakfast.

For months, now, Piper’s been getting physical therapy to make sure her gross motor skills keep relatively on track with the rest of her. (She could identify ducks and squirrels and dogs and trucks early on, knew the ASL signs for them, and damn near had her Masters degree in fruit-specific botany terms before she deigned to try walking on her own.)

For a long time she insisted on having an adult finger in both hands when trucking around on the playground, and it took a little while to get her down to walking with just one hand clutching ours. But in the last several weeks, her confidence and balance have come roaring to the fore, and as of a few days ago, she’d made the switch from “default to crawling” to “default to walking,” with all the congratulations and hubbub from her parents and grandparents that you might imagine.

So when she and I got to the park yesterday, I unbuckled her from her car seat, lifted her out, reflexively swept the seat for pretzels and cereal, set her down on the ground, and reached out my hand so we could start strolling.

Instead, she took off without me.

For the next hour, I mainly let her take the lead and set our pace. We stopped to snack and shoo squirrels and make beelines for other parents who might have more interesting food, but mostly she toddled and explored, reaching for my hand only when she needed to go up or down stairs, or take an off road trip into the bushes or back paths. She would occasionally (and very carefully) bend at the waist to pick up acorns or particularly sparkly rocks, usually managing to stay on her feet.

Coming down a set of stone steps, she demanded my hand at the top and immediately released it at the bottom, having seen a particularly alluring acorn, and I found myself, just for a second, momentarily and ridiculously … sad.

“But sad for what?”, I asked myself. Sad that the hand-holding rituals of a whopping two months were changing? Sad that this little person is discovering and exploring her independence? Or sad to find myself one eensy bit less necessary in this one aspect of her life? I knew rationally that all of these are cause for celebration, but surprised myself by still feeling a minute sliver of loss when she didn’t grab my hand again.

I think that’s what surprised me: that in 15 months, the biological imperative To Protect And Serve could have already been grooved so deep into my brain that Piper’s polite “thanks, but no thanks” could leave me for a moment wondering what I’m supposed to do with my hands when I go walking now.

(Do all parents meet their kids’ increasing independence with this same mix of 19 parts joy and 1 part mourning the moments just passed? More worryingly, does this put me at risk for mawkish wistfulness for the “simpler” days of infancy, when “all we had to worry about” was getting enough sleep to let us remember to move the oatmeal out from under our faces before we passed out on the dining room table? Lordy, I hope not.)

For better or worse, I felt necessary again about 20 seconds later, as Piper cussed me out for my stubborn insistence on walking between her and the curb, beyond which rolled the cars in the parking lot. “What a jerk you are, Abba,” she said (paraphrased) as she tried vainly to get around me and go give the Escalade a big hug. “Ah, yes,” I thought to myself, intercepting her. “Those familiar twin feelings of Being Needed and Being Yelled At: we’re not done with them quite yet.”

I scooped her up, buckled her into her car seat, handed her the raccoon trap filled with dried fruit and cereal and pretzel twigs, and we headed home.

I really, really need to nip my own reaction in the bud, here. It’s way too easy for me to get caught in the minutiae of a single meal, instead of backing off and remembering: we offer her a wide variety of (mostly) healthy foods, and she picks and chooses and doesn’t ever go hungry. And if she doesn’t eat food X today, she might tomorrow (and, gallingly, vice versa).

Control issues around food: never a good idea.

One year ago today, Lucy-the-cat threw up on your (closed, thank god) laptop. I cleaned it up and never told you. By now, it should be clear there was nothing to worry about! Enjoy!

And people say men are no good at communicating in relationships.

We refer to this process as “hitting the snooze button.”

Also, after a long period of comatosity this morning while we brunched with Bob, she’s refused outright to nap this afternoon. Instead, she’s been lobbying for gazing adoringly at our faces (cute), crankily alerting us to imperfections in her diaper (necessary, though hardly endearing) and acting as an impromptu carpenters’ level by creaking whenever she lists sideways (this gets old quickly).

Earlier in the week, I took a trip up to Helen Hayes — at the request of the staff — to talk with a patient with GBS. Had a long and cheery conversation with her, with the strange double-vision of seeing the same halls and rooms I’d lived in through her eyes. She seemed to me to be in great shape, soon to return to school and very upbeat about her recovery. We talked about feeling constantly warm, foot pain, how friends react to odd and prolonged illness, and about the survivors’ guilt of the recovering paralytic amidst slowly- or non-recovering people.

On the way out, however, I ran into the family of another patient there with GBS: a guy who’s not nearly so sanguine. Found myself talking with him about how frustrating the relentless optimism of one’s family is while having to fight back the reflexive urge to tell him that he’d certainly get better from where he is now. Also found myself thinking about how, when I’d been at HHH for one week, I’d practiced a sort of … “active acceptance” of where I was, right then. I couldn’t sit up, it hurt to lie on my back, I was still sporting an active tracheostomy… and every single day I really tried not to look any farther ahead than that evening. Or lunch, some days. Had I looked any farther out, I’d have felt astoundingly helpless in the face of all that unknown.

And as to feeling helpless… Last night, on the way home from Queens, we had a very minor fender bender. We were stopped at a stoplight and a car tapped us from behind at probably 3 mph, no more. It was a solid jolt, though, and it startled the hell out of us and immediately woke Piper to squalling, dozing in her car seat. We made sure she was okay, got out, looked over the damage (nearly nothing on our car, and some nasty crunching on the grille of the ancient P.o.S. that had hit us), exchanged numbers with the driver, and weighed whether or not to call the cops and file an accident report, ultimately deciding not to. (The folks who hit us seemed eager, to say the least, not to have to involve the police or insurance, and since the damage to our fender looked minimal, we decided to take their offer of having our bumper fixed at their expense and not sit around waiting for police and paperwork. Naïve, maybe, but we’d had a long day and just wanted to go home and go to bed at that point.)

As we drove home, every other car on the road looked like a threat. All the vehicular motion around us was menacing, and the walls of our car felt paper thin. Piper was cranky and hungry, and her announcing this kept our nerves jangling. (I craned my arm around and volunteered my pinky finger as an impromptu pacifier, with which she happily calmed down, though my shoulder was not crazy about the angle of exertion required.) Got home, found a parking spot, and called the pediatrician just in case. They asked us some behavioral questions, wanted to make sure the latch on Piper’s abdomen hadn’t bruised her, wanted to make sure she wasn’t concussed, and then confirmed what we already intuitively felt like: she was fine.

That ride home, however, where we realized just how helpless we were before whatever the world threw at us, has stayed with me today. We went out walking to brunch; I jumped when cars drove by. A bee flirted with Bob and Bob’s breakfast at the table; I wondered where my long-expired epi-pen is living. It’s a hard thing, recognizing and accepting the limits of one’s power in the world, and it’s clearly something that needs to be practiced often if one is to retain calm in the face of motion, whether too much or not enough.

For all we know it’s plate tectonics she’s objecting to for 3-4 minutes at a stretch, or gerrymandering, or Orly Taitz, but when we know she’s well-fed, changed, not too warm and not too cool… at that point we pretty much resort to gentle mockery (at her) and going on with our lives (us). We’ve had to make some modifications — I ate my dinner standing up and bouncing with Piper wrapped to my chest and my dessert leaning back at a slight angle with Piper in full-on space heater mode, crisping all my chest hair with her mysterious heat emanations — but hey, tonight we managed to microwave leftovers for dinner and watch at least half of Harry Potter and the Even Longer Movie Than The Last One. Now we’re shoving the piles of clutter out of our way and collapsing into bed. Go us.