Enter The Deuce, Part V
The text was simple enough: “Call me when u can”.
I’d not have seen it for a couple more hours had I not been pulled over at the side of the road. I was four hours into what was likely to be a five-plus-hour ride for the simple reason that I’d been unable to recruit anyone to turn around before Point Mugu. We had dropped a rider somewhere on the way back and leaving people for dead is something that violates my sense of the social contract among cyclists.
Put another way, in my mind that’s seriously not cool.
It didn’t help that I might have been part of the problem. I’d taken some long pulls at the front and wasn’t entirely aware of what was happening behind me. So once I was aware, I told my buddies to stop at the next gas station and I was going to pull over and wait for our rider. After about five minutes, I pulled out my phone to text my buddies to let them know I was still waiting. That’s when I saw the text from my wife.
I rarely see a text from her when I’m riding. She sends them occasionally, but they are always the same thing: “When will you be home?” She’s okay with not receiving a response most days, or at least I think she’s okay with not getting a response. Usually, I’m riding with breaks that range between few and none, so it’s not uncommon for me to see her text as I’m telling her about the ride—after I’ve arrived home.
That she wanted me to call, that she wanted me to call before I got home, that she wasn’t willing to text me whatever she had to say, well it all added up. It felt more like subtraction, like I was going to be losing ground, but I knew well enough what the call would cover. The call was going to concern Matthew. A day-and-a-half before doctors had discontinued his Octreotide (that I can say/type that word without a hiccup is kinda disturbing). The most likely reason for the call is that doctors had found more fluid in his chest. The call was going to tell me something that wasn’t surprising, but was a long way from good news.
Our rider was nowhere in view, so I dialed. As expected, my wife told me there was fluid in the Deuce’s chest. He was back on the Octreotide and they’d turned the suction back on to hopefully draw out the fluid around his right lung. I told her I’d do what I could to get home as quickly as possible and then on to the hospital. And with that our wayward sheep rolled up and we rolled toward our rendezvous. If nothing else, I thought the extra mile or two of company before reaching the gas station would be good for his spirits. My plan had been to tell him encouraging stuff about how strong he was and how sorry I was that we’d rolled away from him.
I managed to apologize, but after that I fell silent. I think I may have issued a forceful and lengthy exhale, the signal that something’s rotten in Denmark.
“What’s up?” Maybe he was concerned that there was no escort back home. I said something about “son” and “setback” and mentioned how my role was to keep my wife calm. I didn’t mention how I was two hours from dealing with any of this, that until I reached the hospital all I’d be able to do was obsess, and I mean that in every sense. The only thing I was going to do was obsess.
On the way to the hospital, traffic slowed on the freeway; I was doing roughly 40 when a few motorcycles came by me in the carpool lane doing at least twice my speed. The phrase, ‘As if I was standing still,’ rang in my ears until I saw the Roman candle of white plastic and rolling bike and body. At a break in the carpool lane a sedan swerved into the carpool lane just as the motorcyclist and another rider passed a car. The playback in my head suggests the rider who went down bounced off the car then clipped the back wheel of the other motorcycle before high-siding.
I called 911 and they transferred me to California Highway Patrol to whom I reported what I’d seen in bullet-point form. Location, direction of travel, vehicles involved, injury, high rate of speed. They asked me my name and I hung up. At that point, I was ready just to turn around and go home.
Wait, it gets better.
Shortly after I got to the hospital, a couple arrived in our pod—Matthew had been moved to G—to see the baby next to Matthew. Naturally, the nurse, who has never seen them before, asks to see their ID bracelets. They’re not wearing them.
Allow me a brief digression here: When Matthew was born, he, my wife and I were all issued bracelets with a number stamped in them at the point of manufacture. The number matched on all three bracelets. The nursing staff put something even greater than the fear of God into me: the fear that if I removed my band, I’d never be able to see my son for as long as he stayed in the hospital. So when edema caused my wife to balloon like a tube inflated without a tire around it and her hand started turning purple beyond the wrist band, they cut hers off, but not before everyone agonized about what should be done next. Should they issue a new set of wrist bands? Should she just keep hers? Would the hospital administrators get upset? We put the band in her purse and waited for someone to flip out.
So both the mother and the baby daddy aren’t wearing their wrist bands. The nurse says ‘fine’ and asks to see ID. ‘Do you have driver’s licenses?’ She doesn’t have hers. He doesn’t have one. At all. ‘Do you have any ID, a wallet with anything?’ No. ‘How’d you get here?’
“Oh, we drove; I got my car down in the lot.”
As this is taking place baby daddy has his back to the nurses and is staring into space. He gets mad points for being completely unperturbed by this (in the retelling my mother-in-law wondered if he was stoned, a thought that—inexplicably—hadn’t occurred to me). Perhaps he didn’t know that at this point the nurse should have just tossed them out. She didn’t do that. Instead, she gets out the mother’s records and asks her for her address and the last four of her Social—something she manages to deliver. Him? Nothing. He could have been anyone, but they let him stay. The rest of the nursing staff is walking around with the raised eyebrows of, “Can you believe this?”
To her credit, the nurse was just trying to avoid sending a child’s parents home. She broke the rules for as decent a motivation as one might have. Dispensing with their protocols didn’t bother me. What bothered me was that I couldn’t help feeling that this helpless child—one with an effusion far worse than Matthew’s—deserved better than these two fuckups.
The neonatologist sat down with me and we went over the Deuce’s situation. They had stopped the Octreotide and some 36 hours later they did a chest x-ray (he’s had at least one per each day on the planet) and found fluid in his chest again as I expected. The doctors would have been more surprised if there had been none. effusions usually take a month to resolve. Two weeks would be unusual. They backed the drug off less because they figured he must be well than they needed to check and see if he’d made any progress in that time. The doc told me that it seemed like he might have, but they couldn’t really tell because the fluid wasn’t draining and they weren’t sure why that was.
If I’d had any reason not to trust him when he said that Matthew was doing well, that they were pleased that he was stable and felt he was making progress, that evaporated when I heard just how frankly who could speak to the parent of a newborn. The parents of the 480gm girl next to Matthew had departed after a seemingly brief visit and the doctor was now calling her at home. I’m not sure what he said that caught my attention, but I’ll never forget the words he spoke as he walked out of our pod: “I’m not going to lie to you. The situation is not good.”
For those keeping score at home, my day had included a long ride with friends knocked out at a tick or two under race tempo. Win. A quick post-ride lunch consisting of Wahoo’s enchiladas with a buddy. Also win. A motorcycle crash on the freeway. Lose. Witnessing the clueless attempts of a couple of kids to verify their identity as the parents of a newborn holding the biological equivalent of a pair of twos. Big lose. Finding out Matthew was producing fluid, fluid that was currently staying put. Yeah, lose.
Wait, it gets better.
Next-door baby needed some procedure that I assumed was more than drawing blood but less than surgery. Staff drew the curtain around as I waited for the shift change; I wanted to hear what info the our nurse deemed important enough to pass on to the next shift, plus I’d have a chance to be around for his next chest x-ray. Matthew had been awake and I’d been talking to him, telling him about my day, the new skatepark I was planning to take his brother to the next day, how I was hoping to catch up on my favorite show, Archer, that night after dinner. Explaining satire to a newborn isn’t as hard as you think.
Then I heard a gasp and an “Ohmigosh.” I was too spent to keep track of what was being said. It washed over me like a heater set on full blast, a buffet of other peoples’ panic. Things weren’t going according to plan and things were getting serious, STAT. While I had every right to hang out with my son and wait for the changing of the guard, not to mention checking out the x-ray, I wasn’t feeling good about being an accidental witness to whatever was taking place eight feet away. Decorum suggested I leave. Well, more properly, my sense of decorum demanded that I leave.
As I drove home there was still a CHP cruiser with its lights on parked at the site of the crash.
An oxygen line has been taped to the Deuce’s face once again. It’s blowing normal air, but it is blowing at two atmospheres. Of course, his rest isn’t the gold standard it had been. The thinking is that air blowing in him will help the lung inflate more fully. That should make the Deuce breathe more easily and fully, and it may help push the fluid in his chest out. What I know is that either that outcome of his body reabsorbing the fluid are acceptable outcomes. Of course, I am aware that you don’t have to be too inquisitive to conclude that they doctors will take action if the fluid stays put with the same stubborn intransigence of my other son on the couch at bed time. But just what they’ll do is an answer I don’t have.
And right now, I’m not ready for it, either.
Enter The Deuce, Part IV
Initially, doctors placed his Tininess the Deuce on a ventilator because his lung function was so marginal. Even though they used components small enough to put on a G.I. Joe, his head still looked like he was wearing a football face mask sans the helmet. He was anxious, uncomfortable and though new to the world, not a little pissed off. I think back on how I was once made to feel uncomfortable on my first day of a job and how quickly I came to detest that job and I couldn’t help thinking that the Deuce deserved a better shake than all that plastic.
Fortunately, his first big step was demonstrating stronger lungs, and that allowed doctors to replace the ventilator with just oxygen. For a while, the air flow was at two atmospheres, which is the breathing equivalent of drafting your buddy at 20 mph. Eventually, they turned the oxygen down to a single atmosphere before removing the oxygen altogether, less than a week after his birth.
Seeing him breathe on his own was quite a relief for us, and it was the first big step, strength wise, for him. But it has paid another benefit that could easily be underestimated: That’s one less piece of equipment attached to him. Three days later they removed the O2 line and then a day later, pissed off and tired of being pissed off, he pulled out the feeding tube that was running in his right nostril.
I should add here that having all that plastic off him did yield another benefit, one not insignificant to his mother or me: I can see his face in full and damn if he isn’t yet another handsome Brady.
As cyclists, we’ve all crashed at some point. And as you know, road rash aids sleep the way a wet chamois aids a long ride—not at all. I knew once he was more comfortable, he was going to sleep better. And if there’s another thing cyclists know, it’s that when you’re uncomfortable sleep doesn’t come easily and recovery comes slower.
Once the Deuce’s face became a tube-free zone his sleep did improve. That was a week ago. Since then he has slept more peacefully and for longer periods. That on occasion he has slept through my entire visit doesn’t bother me a whit. Biologists like to say sharks are eating machines. I call Deuce the growing machine. The more he sleeps, the more he grows.
We’ve also had reason to be encouraged because the fluid draining from his chest stopped last weekend. I’m told that initially he was producing more than 90ml per day. Late last week he produced only 30ml. Then, over the weekend, he stopped producing any fluid at all. That’s progress of an order that encourages his doctors and nurses. Still, his body needs to do some growing and adapting, and the best way for that to happen is if he’s draining as little fluid as possible. In my head I think of how hard it is to stack sandbags at the bank of a river if it is already cresting. If you can start stacking before the river crests, the job is much easier. To help cut the production of those fatty lymphocytes, the doctor has administered a drug called Octreotide, which sounds to me like the name of a sea-going dinosaur or perhaps a spy organization that James Bond needs to foil.
Ask a doctor or nurse any question about Octreotide, such as, “How much do you plan to administer?” or, “How much does a dose cost?” and you’ll get a curious response. The first thing they tell you is, “We don’t know how the drug works.” Why they all lead with that (and I’ve heard that statement from four doctors and five nurses), I can’t pretend to know. What I do know is that it does decrease the flow of the fatty lymphocytes and it runs $1000 per dose. That last detail nearly gave me a panic attack.
Because most of the time we’re here he is asleep, we have pretty narrow roles. Before the ventilator was removed his sleep, at least when we were here, was brief and fitful. Helping him relax so that he wasn’t so agitated was my one real job. I’ve spent a lot of time reading or writing. At some point while I was out last weekend the nurses commented to my wife on just how much time I was spending in the NICU. They told her not only was it unusual for a parent to spend so much time there, it was especially unusual for a dad to spend that much time there. That they’d make any mention of it mystifies me. I’m not doing this for some sort of “Best Dad” award from the nurses, and having it mentioned at any level makes me uncomfortable. I’m here because I need to be. That’s just my conscience at work. Honestly, I don’t know what else to do. Maybe their opinion of me changed when I didn’t come for three days this week because I was sick. Who really cares?
While we’re encouraged with his progress, his situation isn’t like with the flu, where once the fever breaks the outcome is all but assured. The distance he has covered since he was admitted is enormous. Doctors plan to end the Octreotide treatment soon. The progress he has made suggests his condition is a football spinning toward goalposts—headed in the right direction. But his condition is also like that football in that unless it passes those goalposts, there’s no score. Until the doctors are certain his body has stopped effusing that fluid, he’s headed for surgery, and for whatever reason, the likely outcome or how far in the future that necessity might appear, the doctors absolutely refuse to discuss the surgery with me.
The one detail I was able to elicit from a pediatric surgeon is that the surgery is difficult. It is difficult because the doohickey in question—his thoracic duct—is hard to find. Even though it functions like a vein or artery in that it transports a fluid from one part of the body to another, it is filled with a yellow fluid, rather than blood and so it doesn’t show off with the distinctive contrast that we see with arteries and veins. It doesn’t take a rocket scientist to understand that because this thing runs along the spine but behind the lungs a great many small and delicate organs would have to be moved. I think back on the mess I created last time I emptied the garage in an effort to clean it up and organize it better.
In refusing to discuss the surgery with me, not whether he needs it or not, but what the surgery would entail in detail, I’m left feeling more frightened of it, more certain that I’ll pray to any God—every God—if there’s any chance it might eliminate the need for even one scalpel.
The enormity of what we’re facing comes back in odd and surprising ways. There are details I process and dismiss if possible. Some just hang in the air unprocessed. On the day Matthew was admitted to the NICU here at Downey, when he was still just the Deuce, someone gave me a tour of the NICU. I heard how my son would be tended by his own nurse 24/7, how there was a private lactation room for my wife to pump, that there was a special freezer for her milk, how babies leaving the NICU “graduate” complete with a ceremony in which “Pomp and Circumstance” is played—detail after detail meant to reassure me that he was in a thoroughly superb facility. One detail hangs out there, unable to persuade me that our son is as healthy as they seem to want to convince me.
The NICU here is arranged in “pods” of six incubators. The pods are labeled alphabetically, with the healthiest babies, the ones about to graduate, held in pod “A.” Each successive letter means the case is a bit more serious. Matthew is in pod “H.” There are only eight pods. The math isn’t hard, is it?
One night the power went out while we were here. I’d forgotten about it until my wife asked one of the nurses about it the next day. When the outage hit, the lights went out for what seemed like two, maybe three seconds. Then they came back on as I expected, thanks to the generators. Filed somewhere in the recesses of my gray matter is a memory that hospitals have generators that will run, at minimum, for eight hours. I knew this was part of Southern California Edison’s service territory. I knew from having worked in communications for their Transmission and Distribution business group they’d have a couple of troublemen on the case in less than an hour. The popped transformer or downed line would be back in operation before our heads hit the pillows. I ceased to think about it by the time we were home.
In an email friend shared with me the circumstances of the birth of one of his children, how his wife was taken from him moments after his son was born and what little the doctor told him included odds of only 50 percent. As my heart was going out to him in terror, this despite knowing that he, she and their sons are all healthy, I flashed on how an infection began in my wife during the late stages of delivery. How she started running a fever and how we were told the danger threshold was 100.4 degrees Fahrenheit.
Hayzoos Hardened Christo! How do you forget a thing like that? By the time Matthew was delivered we were in a race to get him out because her temperature had risen to 100.2. No one would tell me just what would happen if she hit the magic number, though when I asked one nurse, “Caesarian?” she shook her head and said, “No, nothing like that.”
Okay, if not that, then what? I never found out. Doesn’t matter. The fever broke, she finished her rounds of antibiotics, stuff so powerful it burned her arm as it went in and she squirmed like a worm on a hot sidewalk.
What I’m left with is a new normal. It’s temporary, but anything you do for a month becomes a routine. I’ll gradually figure out how to keep up with the email that’s burying me—it turns out the wifi here on weekdays is weaker than watered down Gatorade—and how to start shipping orders from the RKP store again. I’m making notes of the music I can listen to that doesn’t make me snivel and wipe my eyes. Turns out it’s a shorter list than I expected. We’ve met with the people in admissions and got a number from them, one that describes what we’re on the hook for on a per diem basis; we don’t have a way to resolve it yet, but knowing what we’re looking at gives me a way to think about what I need to accomplish. It’s a bit like planning for a road race you’ve never done—at least let me know how many miles it is and how much climbing there is.
There it is again, the bike. I’m not exaggerating when I tell you that without the bike I’d be lost right now. From riding them to melt away the stress pedal stroke by pedal stroke, to thinking about them as a way not to obsess on my son’s care, to all the support I’ve received from the friends. And how my definition of friend has grown; naturally there are all the people I see on the rides, they who may say nothing more than “congrats” as they ride by, but it has expanded to include all those of you who have emailed me and commented here at RKP. Anyone who would share something so personal as the successes and losses you’ve experienced at this fragile entry point of life is a true friend. Amazing how much you can gain even as you stare into the abyss at what you might lose.
Friday Group Ride #159
Both Hinault and Hoogerland start with the letter H, and that’s pretty close to where the similarities end. We have, only recently, discussed the need not to make heroes of athletes, and if there is any lesson from the events of the last year (or decade) that must be it. Having said that, I cling to the idea that I can admire certain titans of the sport despite their human failings. In fact, there is little I appreciate more than the tragic tale of a flawed genius.
As a football (soccer) fan, two of my favorite ever players are Diego Maradona and Zinedine Zidane, a couple of characters who struggled with demons that almost always threatened to overcome their natural brilliance.
As we evaluate and reevaluate our sporting icons, there are two qualities that always seem to spark my passion, bravery and audacity. Bernard Hinault, a deeply flawed genius in his own right, is, to me, cycling’s very best example of audacity. Always looking to turn a race on its head, always willing to attack, Hinault could rightly be called an asshole, but it was his naked audacity that lit up the racing of the late ’70s and early ’80s, a time I was just becoming aware of the sport.
Johnny Hoogerland on the other hand is not much as a cyclist. Oh, he’s good, a cagey climber and opportunist, but he is not the dominating persona that we normally turn into a hero. What everyone remembers about Johnny Hoogerland is his crash from the 2011 Tour de France, a television car pinching sideways into a group of riders, Hoogerland spinning skyward and then bouncing into a barbed wire fence. He got up and rode out the end of the stage despite serious lacerations. Later, he cried on worldwide television as blood streamed down his legs and the polka-dot jersey pulled tight across his chest. Instant legend.
Forget the fact that, just a few months after being struck by another car during a training session, bruising his liver and cracking his ribs, Hoogerland is clawing his way back into the pro peloton. The guy is unstoppable, and I don’t know if he’s a hero of mine, but I certainly admire him his courage and wish him well.
We are in a different place now with our cycling. We see the riders differently, but maybe we can still have some heroes, some people whose audacity and bravery we can appreciate, even as we pass the opportunity to place them on pedestals. This week’s Group Ride asks who your new cycling heroes might be? What do you like about them? And how do you see them differently now, in light of all that’s come out about the sport over the last year?
Image: John Pierce, Photosport International
Incidentally
I think about the bike a lot. Too much. I think about my bike. I think about your bike. I think about the next bike. I sell bikes, and I tell stories about bikes. I reminisce about bikes I used to have, and I try to convince my wife that the next bike is important, more important in whatever very specific way than all the ones that came before, the ones still crowding the garage and spilling into the basement, leaning against the cedar chest, blocking access to the laundry room.
The bike, however, is incidental.
I will pore over the details of the build, wondering if 12-32 isn’t maybe a better choice than 11-28 for where I want to go. I will consider 28mm vs. 32mm, because of the particular ruts that mark graded New England dirt roads and the washboards that develop during the latter stages of mud season, the ones that shudder through your whole body as you plummet off the top of some nowhere hill. I will consider lighter wheels.
I don’t want another bike. I think I do, but I don’t. I want to get to the places the next bike might take me, long fire roads that connect high lookouts to hidden ponds, ropey dirt paths that lead past people’s other homes or the retreats of those who no longer wish to live so close to the flame of peopled lunacy, simple sand and gravel throughways that ring farms and bisect primordial forests. I want to feel the gravel and hard pack beneath the tires of that next bike, and I want to fall off it and scrape my elbow, lay in the road laughing.
The bike is no more necessary to that experience than the elbow.
I want to ride with people who have that sort of bike, because those are cool people. They’ll give you a bottle when you’ve underestimated the day, the weather, or your own capacity for suffering, because really, suffering you can seek and tolerate is no suffering at all, but only a gilding for your flowery ego. The people who ride bikes are the best sorts of people, because they’re all kinds of people, and the bike only gives you a reason to speak to them, that and the sand and the gravel and your desperate need for water.
I will call Padraig on the phone and wander the parking lot at work while we plot and plan the stories we will write about riding our bikes up and down geological formations, places where glaciers scraped up against granite, and we will try to piece together a second living from our efforts, all of it wrapped around bikes and cycling, all of it combing through the details, panning for gold.
We have this friendship, he and I, that seems to have started in a correspondence about cycling, but later found us standing face to face in a casino, hugging each other in incredulous first meeting bemusement. We drove out past the strip malls in the Las Vegas hinterland to crowd around a greasy grass track and watch a bike race, all of an industry swirling around in the spotlit darkness. On the way back he bought a Mountain Dew and a bag of Peanut M&Ms, so he could stay up and write more stories about bikes.
I don’t know if any of this, the farm roads, the casino, the people, if any of it happens without the bike. I don’t know. I am under the impression that you can skate, surf, climb, hike, run to the same sorts of salvation the bike has brought me. I can take the thing itself too seriously. I can focus all my attention there, when it is only really a cipher for life’s cluttered bucket of fun and misery, a pivot point.
The bike is incidental, deeply important, but only incidental. I think.
Enter The Deuce, Part III
I live in a world with little certainty, but plenty of answers. The number of things I know with certainty I can count on one, maybe two hands. Beyond the love of family, my life has taught me that nearly everything is up for grabs. From where I live to how I earn my living, any of that can change, and sometimes as quickly as a snowflake melts.
A pilot friend of mine likes to say that such a view of the world teaches you “situational awareness.” Answers change from day to day, moment to moment.
Knowing that Matthew’s condition yesterday may not be his condition today or tomorrow may mean less certitude, less assurance for me, but it means I’m less surprised by changes. In my life, that outlook leaves me feeling calmer, perhaps because I think I’ve got a better handle on reality that way. Some of the answers the doctors give us aren’t what we’d expect, sometimes they are better, but I try not to make the mistake of assuming that any improvement he notches is the new path of his growth.
That sort of thinking leads to real estate bubbles.
And though there are plenty of answers to even the most mundane questions in my life, I’ve been presented with one question to which I simply don’t have a response.
“What can we do for you?”
I’ve received texts, emails, notes on Facebook and phone calls. From family to friends and even acquaintances, people have reached out with generous offers to ease what we’re going through. I see this as a demonstration of the idea that it really does take a village to raise a child. This is a community coming together in the kindest way possible.
I have no idea how to respond. I went through this just a few months ago with my crash. Friends asked what I might need, and I told them honestly that I didn’t know. Had Robot and Eric not set up the beer fund, there’s a lot of love out there that people would not have found a way to express. The genius of the beer fund was its simplicity—buy a guy a beer. That it wasn’t my idea made it easier to accept. There’s an odd dynamic at work in crisis; I can say this is true for me, but I suspect it is also true for a great many people. When the glue melts, very few of us are against assistance. What is far more challenging is articulating what we need. Certainly, I have seen friends who can marshal the forces and get their house cleaned, fridge filled and laundry mastered. But there are those of us for whom naming a need has a difficult, two-fold effect.
In cycling, rendering aid is easy to do. If a rider is falling off the pace, you pull ahead, give them your draft and close the gap. If a rider crashes, you render first aid. If the pace is meant to be hard but output drops, you go to the front for one more pull. If your friend’s bottles are empty, you share yours. None of this requires a request or a response. This is the unwritten etiquette of the peloton. I don’t mind admitting that cycling taught me these lessons in concrete ways, that prior to cycling I’d been too much of a lone wolf to really understand the social contract.
If only real life were as easy.
Putting a name to what you need means acknowledging that your shit is not under control. That’s tough to verbalize because it requires vulnerability. Implicit in naming that need is a kind of request as well. Even if the help was offered, where things go wrong for the helpee is that by naming something specific, it feels as if we’ve asked for something, and again, that means making ourselves vulnerable.
The real trouble is that I’ve already acknowledged more vulnerability than I’d prefer. I’ve admitted to thousands of people that I’m terrified that my son might die, that even if he doesn’t die, that he might be in for the ultimate unmaintained fire road to good health. Isn’t that enough? To ask for help is to drop yet another rung down the ladder.
Matthew is frightfully fragile even now. When we’re in the NICU, hand sanitizer punctuates each interaction. Take a picture—hand sanitizer. Touch your hair—hand sanitizer. Type an email—hand sanitizer. I look around at the other babies in his pod and they are all premies, beings of such frail composition that they don’t yet look fully human.
As to that phrase, “When we’re in the NICU,” well, it’s taken on a more conditional flavor. Our other son Philip had a runny nose for half an hour or so on Sunday afternoon and now Shana, her mom and I all have some virus that prevents us from visiting Matthew. It’s not just not visiting Matthew, either. It’s that we accept that to step foot into the NICU would put every child, every doctor, every nurse and every staff member, not to mention every other parent there, at risk. I love my son and want to see him, but going to the hospital is a level of selfish that’s just unconscionable.
Each day of not seeing Matthew is excruciating; never have I loved anything so new with such abandon—college girlfriends included.
Of all the qualities I admire in other people, grace is the one that most consistently leaves me in awe. I think that’s due to how slow I am to recognize it. Grace is a souplesse of the soul, an effortlessness of self that makes interacting with some people a kind of endless joy. Those are people who make me feel better about being me. It’s the rarest of gifts. I think that if I had their grace I would know how to accept help in a way that gave me what I most need while allowing them the opportunity to show some love.
And that’s what this is about. The offer of help is just a matter of people showing that they care. They want the chance to stand up and be counted. Helping out new parents is part of the brotherhood into which all parents have been initiated. Not to answer is a kind of “no” and declining the offer of help is tantamount to telling someone you don’t respect their path as a parent. To find that I’d done that, even accidentally, would be as painful as insulting my mother.
Recently some friends said, ‘Here’s what we’re going to do: We’re going to bring you lunch on Saturday. What would you like?’ It turns out that was easier to answer. I offer this as a kind of apology for all those who have reached out with an offer of assistance—I’m not unwilling to accept aid, but articulating a need is like talking about the future when all the verbs you have are present-tense.
Allow me to breathe some life into a dog-eared cliché: It’s not you; it’s me.
Enter The Deuce, Part II
What we learned over following his initial day or two was that Matthew probably had a chylothorax pleural effusion, meaning fatty lymphocytes—lymphatic fluid—were draining into his chest via some defective doohickey—a duct, which is the lymphatic system’s answer to a vein—that ran from his pelvis to his shoulder. I did my best to follow all we were being told but at a certain point I was reminded of the “Far Side” cartoon about what we say to dogs and what dogs actually hear. I was hearing something like, “Blah blah, Matthew, blah blah blah, Matthew, blah.
We’re told that this usually resolves itself over a number of weeks. That means a tally of days in the NICU that can number in the 30s, 40s, 50s or even 60s. In my mind’s eye I see this thing as being something not fully formed, a body part that hasn’t finished growing and the time that passes is what’s needed to allow him to recover, although “recover” a misnomer of a term because it suggests that this body part once functioned properly and the facts suggest it never did. And I’m reasonably certain that there’s a better, more correct, more clinically accurate description for his situation, his prognosis, but the reality is, this is how most parents experience a situation like this. Initially, we hear lots of Greek. Eventually, we toss around terms like lymphocyte as capably as a physician’s assistant.
Near the beginning of that last ‘graph I used another term, a less technical one: usually. As in, this usually resolves itself. It doesn’t always. There’s a drug that has a name like a dinosaur’s that we simply refer to as, “the ‘O’ drug.” It works in 10 percent or less of patients it is administered to. That’s a terrible record. But sometimes it helps, and from what I’ve been told so far, it’s the last off-ramp on a highway that is otherwise headed straight for surgery. So far, the doctors won’t discuss the surgery with us. They say it’s a long way off and that more than 50 percent of these cases resolve on their own. I’m not a gambling man, in part, because a phrase like “more than 50 percent” isn’t sufficient for me to place a bet.
When friends ask how things are going, the word I keep using is “siege.” We’re not at war in any classic sense, but the nature of a siege is to wait out the enemy, in this case his malformed doohickey. We simply have to have more endurance than its errant function. Failing that, we will storm the ramparts, an option that scares me a good deal more than the sight I had of dirt and gravel into which I ram-rodded my face last October.
I’m spending most of my waking hours here at the hospital. A few days ago the head of nursing came around to talk with me, something I assumed was just part of their surprisingly friendly and compassionate care. By the end of the visit I concluded that part of her mission was to check how well-screwed-on my head was, perhaps because I was spending more time at the hospital than any other father, a distinction I was not aware of, nor cared about, but it meant I was at the shallow end of the bell curve of at least one population, and in a hospital, that makes people edgy.
So we talked a bit about how much time I was spending at the hospital. I told her, quite plainly that when I’m not here, I ask myself a simple question: Where should I be? Invariably, I feel that my first duty is to be here at the hospital.
I’m clear that I’m not doing anything to increase the quality of the care the Deuce is receiving. At best, all I can do is comfort him when he’s agitated, but that’s not insignificant. His mother, by pumping her breast milk into jar after jar for transfer to the hospital—and hopefully to his belly—is making the most significant contribution to his care that we can offer.
People have encouraged us to keep up our routines. Our other son, Philip, needs us to play with him. He needs to know we are still plugged in to his life. It hasn’t been easy. One morning earlier in the week he and I had a blowout with him refusing to put on his shoes or allow me to put on his shoes so that I could take him to preschool. The next morning we palled around as I dressed for a ride and I told him about a new skatepark I had found that I promised to take him to this weekend. The excitement on his face accompanied by an exuberant “oh boy” fist shake was just the jolt we both needed.
And yes, at the suggestion of others, I’ve gotten back on the bike. Early in the week I went to meet the Pier Ride, the Tuesday/Thursday beat down that serves as much a social function as it does a training one. Despite several good nights of sleep, I struggled to get my heart rate up, struggled to draft at 26 mph, struggled to enjoy the back of the pack. Less than half way into the ride I sat up, let the group go and began to spin in an easy gear back home.
The next morning was better. I joined friends for an easier roll up infamous Mandeville Canyon. The ride lasted more than three hours, long enough to leave me feeling anxious—as if I was playing hooky—but I couldn’t deny two essential facts. First, had I not been heading out to join friends I never would have made it out of the garage. Second, when I reached home there was no denying how good I felt. The stress of the week had me on edge and I was a bit hair-trigger. Just the day before I’d had a talk with the social worker because I was feeling pissed that too many people kept asking my relationship to Matthew. Because my wife kept her maiden name, Matthew is listed as “Reid,” not “Brady,” here at the hospital. As it turns out, I have a limit to the number of times I can be asked my relationship to my son in a single day. I also (and this was a surprise to all involved, including me) have a limit to the number of times any one person can ask me my relationship to my son in the same conversation. So if you ask me who I am and I tell you that I am Patrick Brady, the father of Matthew Reid, I expect your next question not to be, “And your relationship to Matthew is?” Even sitting here typing this my blood is at simmer and that was more than 24 hours ago.
Stress? Yeah, I feel some stress.
My son is my responsibility. He is also my legacy and one of the two people I most fiercely love on this planet. He is not a repository for my dreams. He is a person who I want to prosper insofar as I feel honor-bound to help him find what makes him most happy in this life. I don’t care if he’s smart. I don’t care if he’s handsome. I don’t care if he ends up getting rich. I don’t give a damn if all the other kids like him. If he’s happy, the rest will take care of itself. That’s my promise to him; I’ll do all I can to give him the resources to chase his dreams. I believe in the equation that if he’s happy doing something, that leads to being good at that something and if he’s good at something, he’ll eventually find the kind of success that will allow him to chase whatever variety of family he may want. That may be a wife and kids. It could be a partner and kids. It could be alone and with a dog. I don’t care. If it works for him, I’ll support it.
Before I can even dream about how smart he is, how athletic he is or who he might want to shack up with (let alone marry), he has a lot of ground to cover. There’s no doubt he has made progress, and this isn’t progress that is measured by some academic metric that only shows up on a chart. For that, I’m grateful.
Friday Group Ride #158
Charles Dube’s driveway. A stout piece of plywood and a stack of cinder blocks. We had jumped our bikes at nearly every house in the neighborhood, but his was the longest driveway and the best paved. We pooled at the back, next to his mother’s parked car and waited our turn to hurtle ourselves off the teetering ramp. The last jumper would linger by the takeoff to mark the distance.
As the day progressed we got bolder and began jumping over one another’s prone bodies, the bravery of the jump turning into the bravery of the jumped. It was that fearless time of youth when getting the lift of the front wheel just right seemed easy and power skidding into the gravel at the edge of the road is what you did, because you could. It was all effortless.
Perhaps not coincidentally Charles was the best jumper. A year younger than most of us, he was nonetheless the fastest both on and off the bike, that natural athlete letting us know, even at that age, that we were only average.
These days of jumping our dirt bikes seemed to go on and on. How many hours did we spend there daring each other to do ever more audacious and stupid things? How much blood did we shed from knees and elbows and sometimes heads? None of us had ever even seen a bike helmet.
I recall too sprinting down the sidewalk one day in the pouring rain, my friend Sean and I hustling to get to his house before we were soaked to our skins. And he just failed to lift his front tire to ford a curb and over he went, face first onto the sidewalk, the rain splashing angrily around him and his front teeth broken. I remember the blood streaming down his chin and the look on his mother’s face when we finally got there and the jagged smile he wore for months after.
I have had countless good and bad times on bicycles throughout my life. The intensity of the ones in my childhood seems to have imprinted the bicycle on my psyche, and I wonder if I had been a different kind of kid in a different kind of neighborhood if I’d ever have become the cyclist and person I am today. It’s a thing that is pleasantly impossible to know.
This week’s Group Ride asks what your cycling childhood was like. Did you ride BMX like I did? Were you the best jumper? Or was your path into this life different? What do you remember? And what, from that time, still inspires you now?
Image: Matt O’Keefe
