Enter The Deuce, Part IX
I’ve been thinking about how I transitioned from foreswearing surgery to grudging consideration, to rational acknowledgement that surgery was the only reasonable option for the Deuce’s recovery. To anyone else, this may seem a relatively understandable transition, one that held no miracle epiphanies or hypocritical backtracking of attitude. I, however, have a fair memory for things my mouth issues. One of them recently has approached the speed of mantra: “As long as we avoid surgery, we’re good.”
I can willingly admit that I wanted to avoid surgery the way Grover Norquist wants to avoid new taxes. Surgery struck me as a concession. A concession of what is hard to say, but it indicated a larger failure of less-invasive therapies. It also meant that my son wasn’t quite as strong as I’d wanted to think. This was no minor flaw if surgery was the only solution.
The turning point, I realize, came during our consultation early in the week with the head of the NICU, the charge nurse, the social worker and the ombudsman. Sounds like the title of a French film, doesn’t it? During our meeting the doctor made a statement that I glossed over. I was too focused on getting the answers I wanted to really consider the implications of his statement.
But before I get to what he said, I’d like to discuss the word “imminent.” It’s a word that I’ve heard most often used by defense wonks and neocons. It’s the descriptor they attach to threats, dangers they want to act against. When someone calls something an “imminent threat,” what they are saying is that the boogeyman isn’t just around the corner, he’s turning the corner as we speak.
Imminent is a word that I would use to describe my understanding of my relationship to the earth in that nanosecond I had to consider my circumstances before faceplanting into the ground. There was no avoiding the soil, the gravel, the crash, my face pulverizing terra most firma and the planet returning the favor for my lower lip. Imminent.
The surgeon said, “I believe surgery is imminent.”
I was taking notes as he spoke and I touch-typed that statement into Microsoft Word and then hit return to catch the next significant thing he said. Judging from the open window, I typed more of what we were told, but that’s the only statement I recall from memory, the only one that required further reflection, the only one that forced a change in my views.
:::::
In her introduction to the groundbreaking volume of poems “Live or Die” Anne Sexton compared the ever-shifting mood of her work to the jagged line of a “fever chart for a bad case of melancholy.” That image of a fever chart that has returned to me as I’ve tried to digest the Deuce’s turns in condition. There have been ups and downs in his path to proper development—I’m always cautioning myself against using words like “recovery” because it suggests he was once complete and whole and the challenge has been quite different. The issue for Matthew is just reaching proper health, attaining the biologic maturation of other babies that allows them to grow and flourish once leaving the womb.
Once we realized the Octreotide has ceased to work for him, taking him from the shallow end of a bell curve well into the meat of it, we understood that he wasn’t improving as we’d hoped, that the arrow of his development was pointing down, not up. While nothing had truly changed for him in those five minutes as the doctor explained his condition to us, our understanding changed and each of those changes in the arrow’s direction reflected changes in our understanding. His changes in condition unfolded on a much longer scale with turns too gradual to track from one hour to the next.
The Deuce was fortunate to sleep most of the day following the surgery. The general anesthesia he had been on was something from which he was weened very gradually. While I wanted to see my son’s eyes, to have that eye contact, I knew that more sleep following the surgery was good for him.
Boy, was I right. A day later, as he finally started to come out of the anesthesia, he was the most unhappy he’s been in his short life. To say I can imagine the pain he must have felt as he woke is to suggest I have powers of empathy that border on divine. I cannot begin to process how his inability to fathom the world around him was wrapped in such pain. I ached each time he woke and he cried out in pain until he began to cough. Of all the reactions he might have to his situation, coughing must surely have been among the worst possible, a kind of awful that soars somewhere above having a broken leg hit with a sledge hammer. Poor kid.
Fluid continued to dribble from his chest for another day. It wasn’t much but anything at all was sufficient to prevent me from relaxing. The biggest challenge came yesterday though: The Deuce’s doctors decided he had healed enough to try feeding him. It wasn’t a victory, but it was too significant a step not to be present.
Shana made it to the hospital in time to deliver the first feeding herself. Because of his chest tube, he’s unable to be held, so these initial feeding are from a bottle. Still, it’s not the TPN IV drip that he’s been on virtually since birth. TPN is Gatorade on steroids; it’s prepared to the individual patient’s needs to contain an optimal blend of carbs, protein, fat, electrolytes and more. However, it’s not a perfect instrument. The way the TPN dumps the fats and protein directly into the bloodstream is rough on the liver. Poor Matthew had been on the stuff so long they had begun to cycling the protein and fat out of the TPN for periods of six hours out of every 24 in order to give the liver a chance to rest some; it was effectively recovery between intervals. Sometimes I can’t not see the world in terms of the bicycle.
Feeding him his mother’s milk from a bottle was going to give him a chance to actually fill his belly, to know the payoff that comes from sucking on a nipple and to experience being sated. So far, he’d been sucking on a pacifier for hours each day with exactly zero dividend. It was a wonder he had continued to persist for all the benefit he had received.
His nurse began the process of thawing frozen milk and putting 10ml servings into bottles. These servings are so tiny the amounts of fluid my other son spills as he drinks something could dwarf what those bottles contained. Gradually, over the last day his serving size has increased, though, from 10 to 15 and now up to 30ml. In his mid-afternoon feeding I sat in terror, and I do mean terror, as he spit out the nipple repeatedly because his initial few sucks on the bottle resulted in such a flood of milk he gagged. It turns out our nurse had used a high-flow nipple on the bottle and the experience was so alarming to him I had to work for a half hour to convince him the same thing wasn’t going to happen again once the nipple was switched to a low-flow one. Poor kid must have thought he’d been fed a fire hose.
The reason feeding him mother’s milk is so important isn’t an issue of nutrition. It’s the crucial test for the surgery. I likened what the surgeon did to patching a hole in a roof. The TPN IV isn’t much of a challenge for the repair to deal with. It’s a brief drizzle to the newly patched roof. To find out if the repair is really going to take, what he needs to experience is a classic Deep South thunderstorm. He needs a biblical deluge while doctors sit under the ceiling with pans at the ready. To that end, his chest tube is still in place, but doctors have turned the suction off, to make him a bit more comfortable. It’s a nice step, but the fact the chest tube is still in place is our signal that we’re still watching and waiting to see if his thoracic duct can deal with the lipids (fats) in his mother’s milk.
This isn’t a live-fire exercise for a new soldier, this is the first patrol of Baghdad. And until the convoy is back in the compound we count off hours with no drainage the way I suspect soldiers count of kilometers completed. Each additional click is a bit closer to home, but you’re not safe until you’re home. Similarly, each new poop is a suggestion his system is doing what it needs to do.
Just how long this purgatory of watching and waiting will persist I have no idea. What I know is that I’ll persist in my devotion to being here. I want my wife to give him as many feedings as she wants and those that she can’t be around for, I’ll try to add in myself, but because of Philip, we can’t simply move here which means that most of the night feedings will be provided by his nurse.
That a nurse can report to me on his preferences and foibles carries the simultaneous pleasure of learning something new about my son, while adding the discomfiting realization that someone else is around him more than I am. It brings up all those dichotomies of blessing/curse, poison/cure.
It would be easy to overestimate his health based on the many metrics of his progress. He’s got fewer holes in him, fewer needles and tubes delivering into or transporting out of him medicines and waste. If nothing else, he’s more comfortable. That’s something, for sure. And there’s more of him as well; today he weighs 9 lbs., 12 oz. That’s more than two pounds up from his birth weight.
But this is a NICU. While I appreciate how everyone wants to project what my life will be like with the Deuce in our ideal future, a future where he’ll be an avid roadie with the willingness to let me suck his wheel—talk about idealized futures—this is the NICU. When Shana came downstairs to meet me and take Philip to his second park of the day, there were tears in her eyes and she told me not to go up yet. This is the NICU. Outcomes here are far from certain and today they lost a baby. It was born only yesterday and was admitted to the unit extremely hypotensive and showing signs of high acidosis. At a certain point the staff realized the baby was a lost cause and the entire extended family was admitted into the pod. Shana was with the Deuce as they wailed in the baby’s final hours. She left the Deuce’s side to give them the illusion of privacy.
This is the NICU. There will be no cheering until we get the kid in the door at home.
Enter The Deuce, Part VIII
Yesterday morning I joined some friends for our standard Wednesday ride, a late-rolling affair that’s as much a refuge from the normal work day as it is workout. Most of them know the score and asked how the Deuce is doing. In most cases all I could do was shake my head and say “Not good. The doctor’s want to operate.”
I’m not always the chattiest of riders and this was an occasion when I quickly realized that things would be better if either I was at the front and pulling or at the back out of the matched pairs. On the climb up Mandeville Canyon, where residents are known to have all the friendliness of the Taliban (only one car buzzed me as I rode on the white line on this trip up), I made a heavy surge near the bottom and took my bloodstream to a beat below boil. The desire was less to see how fit I was than to inspect the toll the stress was taking. I reasoned that following a single hard pull I should be able to recover and stay with the group, unless the stress really was that bad. In that event, I knew after a single effort my body simply wouldn’t recover and I’d be left doing the bicycle equivalent of strolling through the mall.
At the top a friend said, “You held it pretty long.” That’s a polite way of saying I had had a single, foolish, pull in me and after hanging on the group for a while following my effort one tiny surge by another rider demonstrated that recovery was for people in hospitals, not me, and I shot out the back of the group.
When the group stopped for coffee in Santa Monica that gave me a chance to split off and head straight for home. I could only muster middling effort; 21 felt like 25, but I pressed hard as I considered what options the Deuce might have.
The surgeon hadn’t called. Why not? Would the doctors continue to tell us that it was okay to wait but they would suggest doing the surgery now? What would happen if we chose to wait?
Even as I was walking through the garage I was pulling my phone from my back pocket. I had a text from my wife and a message from the head of the NICU. The surgeon was at the hospital. He wanted to meet with us. He’d had back-to-back surgeries the night before which is why we didn’t get a call.
I drank my recovery shake in the shower.
The drive to the hospital seemed to be going well until I looked down and noticed I was doing 85. “Easy there chief,” I said to myself. “The hospital is likely to last another four or five hours, at least.”
The head of the NICU and I spoke on my drive and I told him I’d meet with the surgeon when he was available. “I’m really thinking about this, aren’t I?” I said out loud in the car.
Rapport is something for which there is no saccharine. No substitute will suffice. Either you build it with someone, or you don’t. I’d met the surgeon briefly a day or two into Matthew’s stay at the NICU so when he walked up, I recognized him, but what he said, “I recognize you. We spoke shortly after your son was admitted, I believe,” came from a personal place. It was something the doctor/parent relationship did not require, but it was just the thing to break the tension. With that, he asked me what questions I had.
“What I’ve struggled to understand is exactly what his current condition is, just how much effusion there is, how much fluid he’s giving off on a daily basis.”
“It doesn’t really matter. This is a binary problem. Either his duct is leaking or it isn’t. It’s leaking. How much isn’t really important. We’ve tried the two therapies there are other than surgery. Just waiting and letting him develop didn’t work. Adding Octreotide and waiting didn’t work either. In my eyes, we are out of options other than surgery.”
The hyper-logical geek in me loved that he’d used the phrase, “binary problem.” I couldn’t not see his point. Yet, despite his clarity and rational evaluation, he had a warmth to his responses and a relaxed manner as he slouched in the chair next to mine that was more disarming than that of a hostage negotiator.
He then told me about the surgery and how he would try to do it laparoscopically, via a tiny incision in his side and aided by an even tinier camera. Our consent would give him permission to make a big incision in his chest if necessary, but he would try to avoid that if possible. I drew half a breath. Next, we discussed just what the fix was; he was going for the triple-shot approach. First, he would attempt to find the source of the leak and suture it closed. Next he’d place glue over it to try to seal it, the way you might put tar on a leaky roof. Finally, he’d scar the lung so that it was stick to the chest wall, something it’s already supposed to do—stick, that is—but isn’t doing because of the fluid in that space. Finally, he’d insert a second chest tube, this one on the right so that if the leak persisted and began to fill the other side of his chest there would be a way for that fluid to escape.
He asked if I had any other questions.
“Not really. I’ll talk to my wife as soon as she returns from pumping and we’ll sign the forms; I just need to have a chance to talk to her before we sign them.”
The basic logic here is that you just want to go in once and be very, very thorough. I found that oddly appealing. I mean appealing the way I mean I find dying in my sleep more appealing than being eaten by a lion. You know, if you’re gonna get a choice and all….
Half an hour or so before Matthew was wheeled into surgery his nurse inserted a feeding tube in him and began to administer—if you can call it that—whipped cream. He might as well have been a bound goose given the way 40ml of the stuff was pumped into his stomach. Crazy as it sounds, the whipped cream was meant to put something fatty into his system so that—hopefully—it would leak out his thoracic duct and show the surgeon just where to scorch the earth.
What he did next was something everyone within earshot held in sympathy. He began puking up a bit of the whipping cream. He hadn’t had anything in his stomach in more than two weeks. However large it had been, perhaps the size of a cashew, it was even smaller now. What were we talking? Pea? It shouldn’t surprise anyone that stuff was coming up; it didn’t surprise the nurse, anyway, but our nurse was trying to catch and quantify just how much was rejected so she could consult with the doctor. Was this a problem?
The process of disconnecting the Deuce from each of his various devices and Medfusion pumps reminded me of taking down a computer network. Things were disconnected in an organized and systematic fashion. I looked at it and couldn’t tell where you would begin … or end. And then, in a coordinated three count, the nurses picked him and his assorted lines up and transferred him to the cart called “Transporter 1″ that would be used to roll him to surgery.
Damn, this is really happening.
I was aware that of the many decisions I’d made in my life that if this one went well, it would go largely forgotten except by my wife and me and only in our most private moments. But if this, to use the popular term “got sideways,” it was a decision that would haunt me to the end of my days, one that would rob my peace on those occasions when I would most need it. If this didn’t go well, I’d spend the rest of my life trying to forgive myself.
I followed the nurses out the door and to the elevator. Inside the elevator, I bent down to talk to the Deuce and try to comfort him. With my torso at 90 degrees to my legs I felt what must have been an alarming sensation for him as the elevator dropped. I’m not normally bent over when in an elevator, so the sensation was every bit as foreign to me as it must have been to him. We locked eyes and I kept talking. Down a floor, I followed the nurses to a doorway until another nurse stepped out and steered me down another hallway, signaling the end of my time with my son. I felt like I was driving a team car and the nurse was the commissaire that steps out to signal me to turn off the course in the final kilometer. No finish line for me. That was it. If things didn’t go well, that had been my last glimpse of that little guy. She guided me to the waiting room for family members of surgical patients and I quickly scanned the room, realizing that the collection of anxious people, rambunctious kids and sobbing mothers was too much for me to sit there in any relaxed way. I walked straight through and climbed on the elevator to head back up to Pod G.
That Shana has spent so much time pumping her breast milk is something I alternately envy and pity. I admire the effort she has made in pumping her breast milk. She has devoted a part-time-job’s-worth of hours to this. Bottle after six-ounce bottle goes into our freezer. All the space they allocated for the Deuce in the freezer at the NICU was filled more than a week ago. Yet, I’m aware that this has been a labor without reward. It’s hard to do anything this demanding without some positive feedback and while I’d like to think my praise is magic, I’m less than a pale substitute for the bond that comes from your baby at your nipple. My wife is the unsung hero in all this.
We sat beside the empty isolette to which we hoped the Deuce would be returned. I know we talked during that time, but I couldn’t tell you what about. Those hours are an erased blackboard—I can tell something was there, but I can’t quite read it.
In the way that all things we expect to happen happen, eventually the door to the pod opened and they wheeled Matthew back in. At minimum, we could relax because he had survived the surgery.
Enter The Deuce: Part VI
Nature does not abide the straight line. Perfection in nature is rare and what it looks like can be surprising. Imperfections can be just as hard to recognize; often hidden by what we expect to see, what seems normal, they can be the most mundane of details. So while in a straight line we see consistency, constancy, the absence of error, a mathematical precision that suggests a kind of mastery to please the human mind by reassuring us and banishing fears, nature takes its own course, one where the route might be no less imperative, but a path without the arrogance to pass all things undisturbed.
When the housing market took off in the early 2000s, a friend laughed at me for putting what little money I had into a magazine, when—of course—any sane person would buy a house. And if they already had a house, they’d buy another. There can be little doubt it would have been a better use of my money but when my interest rate would have shot through the roof and I couldn’t afford to pay my mortgage—something I considered so distinct a possibility I refused a loan I was offered—as it turns out, I would have been able to keep my house because other tax payers would have been forced to rescue me from my bad judgement. It turns out that my responsible judgement was worse than everyone else’s bad judgement. Who knew? The point being that as he and other friends laughed at me for missing out on what everyone was saying was going to be a permanent escalation in real estate values for all time with prices gaining double digits annually until the sun burned up all its hydrogen. That whole linear function thingy.
Only it didn’t play out that way. But because so many people banked on exactly that impossible scenario (among other factors) our economy still hasn’t recovered.
The Deuce is now a corollary to that fundamental truth. Based on the confusing, incomplete and occasionally contradictory information we’re getting from the doctors, our son either hasn’t improved in a week or he’s worse. Or maybe something else entirely. We’re not sure. But my mind keeps going back to the dissatisfaction I experienced with the housing bubble because though I wasn’t rewarded for good judgement, I knew the market wouldn’t continue to go up, that the bubble would burst, that there would be hell to pay for all those people who bet the farm on a linear function.
What ought to be giving me smug satisfaction right now is just a source of irritation. I knew that the Deuce wouldn’t get better every day until finally he’d go home. But what is really hard to deal with is knowing that he may or may not have gotten any better for a week, but we really can’t be sure because doctors waited six freaking days to decide to inspect his chest tube that was draining no fluid.
Six days ago they told us there was fluid in his chest. Six days ago they told us the fluid wasn’t draining. Six days ago they told us they weren’t sure why the fluid wasn’t draining. Six days ago they admitted the tube might be clogged.
Yesterday, I repeat, yesterday, they pulled the tube out only to discover that—lo!—all three openings in the chest tube were clogged with a thick, pussy gunk.
In my previous discussions with the doctors I made it clear that they had my trust. I made it clear that all I asked was clear and frequent communication based on the facts. In those circumstances in which we didn’t have a complete set of facts, talk to me about statistics and percentages, what was most likely to play out. I know that no one sinks the 8-ball on their opening shot. Just tell me how many shots are likely to elapse before someone calls “corner pocket.”
Don’t bullshit me. Ever.
The request I didn’t make because I didn’t think I needed to make it was, “Stay on top of your patient.” Okay, so that’s not a request, but I could have asked, “Would you please stay on top of your patient?” I’ve received a great many nice notes from medical professionals and regular folks like me who encouraged me to stay chill and let the docs do their thing.
Which I did. I stayed chill.
And what did they do? Well, I’m not sure, but it wasn’t “their thing.” I consider “their thing” to include getting any and all stray fluid out of my son. If his primary problem is fluid leaking from his thoracic duct into his chest and thereby compressing his right lung so that he can’t breathe properly, then they should do their shit and get the fluid out. Proto, or in their terms, STAT.
Look, if this was a carwash and someone missed hitting my tires with the Armor-All, it would be no biggie. My tires aren’t going to go flat. I’m not going to lose control of the car in a turn. My gas mileage isn’t going to fall to M1 Abrams.
But this ain’t Armor-All. This is a rare and otherwise fatal condition in my son. My son who is relying on their skill and know-how to hopefully one-day leave the NICU and move to Redondo Beach. For him to go home, he needs to be well. For him to be well he must improve. For him to improve, he needs optimal treatment, that may or may not include surgery. But we can’t know exactly what treatment he needs if his doctors don’t really know what’s going on with him. And I’m sorry, but if you’ve taken five days to decide to pull out a chest tube that hasn’t removed any fluid from his body to the little measuring receptacle because it is clogged with some sort of puss-like gunk, then I think I have a right to tell you to your face that you aren’t operating with a full set of facts. And if you aren’t really operating with a full set of facts, but those facts are there to be gathered—all they needed to do was pull that tube out to know—then you aren’t really doing your job. That’s an important detail and I have a right to ask why and receive a straight answer.
Look, if I show up for a hilly bike race with a cassette meant for the flats because I didn’t bother to read the course description or look at the course profile, and I have trouble getting up the climbs because I’m over-geared, that’s my fault and I deserve to have my ass handed to me. There was data. I could have made decisions based on it. I didn’t do my due diligence.
My understanding is that once my son has been here 30 days, he will be evaluated for progress. That seems reasonable. However, if his progress depends on treatment that requires a complete set of facts, it’s unacceptable to spend 20 percent of that time wondering why fluid isn’t draining out of him.
Changing a chest tube is no picnic. If Maslow had a hierarchy of discomfort, this would rank way higher than, say, a bagel cut or road rash. You’d rather have the stomach flu than a chest tube. And you’d rather have a colonoscopy than have someone remove or insert a chest tube. But that’s no reason not to do it. Matthew was on a witches brew of drugs yesterday after they did, finally, change his test tube. Dr. Drew Pinsky has made a career out of treating people who think the cocktail Matthew was on—Phenobarbital, Lidocaine, Lorazepam and Naloxone—would make for the ultimate party. He slept the entire afternoon and evening.
We’re three weeks in and our reality is one I struggle to accept. The Deuce’s nurses know him and his preferences better than we do. I hate that. Having a nurse tell me what my son likes makes me feel like the most absentee dad since … I dunno, name the father of some mass-murderer. Most days, I feel like I’m the parent of one-and-a-half kids, if even that.
I learned that a friend of my wife’s used Matthew as motivation while she ran a half marathon last weekend. She said that every time she faltered, she thought of him and that gave her strength. That a little guy who can’t survive outside an isolette can inspire someone to run 13.1 miles is one of those outcomes no one could guess. Finding out that the Deuce could give someone strength even as his situation robbed us of ours humbled me to my core. I felt as if someone else was experiencing more love for him than I was, and in that I was both embarrassed and filled with hope. If that’s not a fresh take on Keats’ notion of negative capability, I don’t know what is.
There Will Be Chaos
There will be chaos—keep pedaling
—Anonymous
This is, perhaps, the wisest statement I’ve ever heard about riding in a pack. I’d love to know who first uttered those words. Who had wisdom enough to say to a friend what might as well be known as the Cyclist’s Prayer? What was the occasion? Better yet, what was the circumstance that first taught a rider that lesson?
A teammate said that to me before a race sometime in the early 1990s. I’m reasonably sure it was before the Bear Mountain Road Race that the West Point cadets held as part of their annual collegiate stage race. What occasioned the comment was a descent on the course in which simply freewheeling inside that pack was guaranteed to see you hit speeds in excess of 50 mph. For me, it would be the fastest I’d ever gone on the bike, probably by a good 10 mph. He said that as riders felt themselves accelerate, some would start to freak and that it was important to put fearful riders behind me. It was good advice.
Two years later another teammate said it to me, though the circumstances are less clear to me now. It struck me because this teammate had never met the previous teammate. Their lives were separated by years, degree programs and geography. And yet, it was the same advice in a different situation. Many years would pass and then in the comments to a deeply personal post I wrote for Belgium Knee Warmers a reader shared that a teammate had once told him before a team time trial, “There will be moments of chaos, keep pedaling.”
For most of the time that quote has rattled through my gray matter, it has served as a rule of thumb, much like the advice to race car drivers to always aim at the crash because by the time you get there, it will be elsewhere. The advice to keep pedaling is comprised of layer upon layer of wisdom. In it, there’s the simple physics of a bicycle, that under power your weight will be centered and the bike will handle better, that if you’re not slowing down, the gyroscopic effect of the wheels spinning means you’re more apt to stay upright—even if you are bumped. There’s the reality of bike racing, that the worst expression of chaos is a crash and if you are pedaling then you’re probably not crashing. Another great truth buried in this little koan is that bike racing is, at its very core, chaotic. If you are to make peace with bike racing, then you need to make peace with chaos. The final kilometer of any race is the ragged edge of disaster itself, one narrowly missed explosion of metal and bone after another, resulting in personal glory for one rider and something approximating relief for another hundred or so survivors.
In the last few weeks, I’ve been thinking about that quote the way I like to think about my favorite quote by William Faulkner: “I never know what I think about something until I read what I’ve written on it.” There is no truer statement that gets to the heart of what makes a writer tick. We write our way into opinions, epiphanies, existence itself.
There will be chaos. Of that, I’m certain. There was a time when I would have railed against that idea. I’d have insisted that life didn’t have to be that way. And I was right; life doesn’t have to be that way. But it is. Chaos is beyond my ken, beyond my control. And it’s in every corner of my life. It is the work of entropy itself, that second law of thermodynamics that stipulates everything breaks down.
Some chaos isn’t so tough to deal with. The chaos of my son Philip’s toys on the living room floor? A bit uncomfortable if one is caught underfoot, but not a biggie. The chaos of the Deuce’s biology? Not something I’m at peace with. The real struggle is the in-between stuff. Modern life is sometimes compared to those Chinese acrobats who spin plates on the ends of wooden dowels. In my case, one plate holds Philip. Another holds Matthew. There’s one holding my wife Shana and a separate one for her mother, who will be with us another week. There’s what ought to be my work life and for much of the last week, I’ve added to that pressure a fresh dose of tasks in the form of everything I’m doing for an upcoming Kickstarter campaign. This afternoon, I was handed yet another plate to swirl into the air when the “check engine” light on my car came on as I was trying to drive to the hospital for some time with the Deuce. It was all I could do to nurse the lurching beast home. Not a bill I want … or need. Damn entropy.
Chaos was what I felt when I realized there would be no seeing the Deuce today.
So, yes, there is chaos. But that’s not how that quote goes. It states, “There will be chaos.” In that I hear the lesson of acceptance, that no matter how much I want to get through this particular chaos, the future will hold more chaos. Acceptance is my reminder to myself that I might as well chill; any plan I have isn’t going to it—the plan, that is.
The second half of the quote—”keep pedaling”—is an imperative. It isn’t an invitation. It isn’t a suggestion. It isn’t a request. It goes Nike’s “just do it” one better because in order to keep pedaling, one must already be pedaling. In as much as this is an imperative, it is also an assurance; you’re doing it right. Now just keep doing it.
I have begun to see this little koan in increasingly large contexts. Several weeks ago, when I was trying to spend every waking hour at the NICU, it became an admonition to stay on the bike, to keep logging miles. The drive wasn’t for preserving fitness, of course, it was just about stress relief, getting out there and clearing my head so that I would be more useful to my wife, more at peace when at Matthew’s side and more centered when talking to doctors.
It has come to serve an even larger role in my life, though. It’s a kind of moral north star for me, suggesting that what I’m doing is good and I can take heart in the idea that I’m on the right track and I needn’t change anything. It’s important to show up, to be present every day. It’s good for me; it’s good for my wife and it’s good for my kids.
Of the many things I need right now, a promise does me more good than all the kilometers I’d log in a month of Sundays. And that saying is nothing, if not a promise. This is going to be weird. It’s not really going to be fun. It’s not over, either—won’t be for a while yet.
But I’m going to get through and what I’m doing right now is what’s going to get me through.
Until We Ride Together Again
The following post is by a contributor new to RKP readers, though he comes with quite the pedigree. August Cole is, among other things, a former reporter for the Wall Street Journal. One of those other things is a dedicated cyclist. We hope you enjoy this new (to us) voice—Padraig
The months of February and March reside well within winter’s confines, but still offer the passionate cyclist a visual bounty.
There is the North American Handmade Bicycle Show, where the apotheosis of frame building is on display to the merry pilgrims who can travel to Denver to seek meaning in machines.
In Northern Europe, brute paths and farm roads that for hundreds of years were the weary arterials of Western civilization begin to coat the peloton with the requisite mud and manure that precedes the professional cyclist’s ablution ahead of Holy Week – De Ronde and Paris-Roubaix.
Our eyes feast.
Yet, for many of us, our hearts are cold. Inside, winter’s bite stings. It is a deep chill, deeper than has been felt in years. Or ever.
Maybe it is midlife. Or worst fears realized. Or a sense of betrayal, the worst kind, by legends who we knew to be our physical superiors and discovered to be our moral inferiors. The sport’s elite have pushed their bodies farther than we can legally and morally abide. Yet we still clothe ourselves just like them.
Cycling is searching for its soul at the very time when the bicycle itself approaches technical perfection. We can ride perfection for less than a committed smoker spends on their annual habit. We know what we see, and we like it. The intimate hours spent online reading about the industry’s finest work attests to it. The wink of carbon weave in bright sun. Team knee warmers matched to arm warmers matched to socks. We ride perfection for less than a committed smoker spends on their annual habit.
What we are not sure is how to feel about the heart of a sport that takes so much but can give back even more. It is like the weeks after a bad crash, when the body’s deeper aches announce themselves only after the Neosporin has done its job for the skin.
If we do not know how to feel about cycling, then how do we feel about ourselves?
Some search for answers during “Holy Week” as the cobbles of Northern Europe become the transcendent place we want them to be. The days spanning the Tour of Flanders and Paris Roubaix are filled with delicious tension. Closer to home, our local dirt tracks and potholed roads take on new springtime significance.
Others seek to imbue their handmade machines with a soulful energy that improbably comes from welded metal, made by men and women who have mastered working with fire. Others practice a mortification of the wallet and continuously lighten aerospace-grade carbon fiber bikes to better ascend.
There is no easy path. There is no single right answer.
What is most important is that we search together, on the road or off it. The best bikes, whether laid up in molds in Taiwan or welded in Watertown, Mass., are just vessels that we use to bring us closer. The camaraderie at a bike-shop Tour stage viewing matters so much more than the lead grimpeur’s VAM. When we see the peloton riding shoulder to shoulder, fighting for each extra centimeter of room on the Oude Kwaremont, we should marvel as much at their ferocity as at their proximity. The peloton binds them as it binds us.
Once winter ends and we ride together again it will be with our hearts, not with our eyes, that we see the beauty of this sport.
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.
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.
Enter The Deuce, Part I
No arc could describe the trajectory of the day. We arrived at the hospital awash in emotions bright as a teenager’s. We smiled through the apprehension of “there’s no going back now.” Of course, that sense was entirely illusory; there’d been no going back since even before the pregnancy test announced “YES” on an August-hot afternoon. There was the kid-on-Christmas-morning excitement as we wondered whether we’d soon meet our son or daughter. But there was the occasional nag, that hangnail of the soul of knowing that doctors had discovered a problem in our child’s chest—fluid surrounding his right lung.
That fluid, some unknown liquid, drove the doctors to decide to induce labor a bit more than a week before our child’s due date. Were it not for that fluid, I’d have been in Denver, my wife relaxing at home. On the ultrasound it appeared as a black L-shaped space in the chest, innocuous to all but the trained eye. To me, it seemed an absence, like something missing, the place on the car where the wheel used to be. How much trouble could it cause? Even the briefest survey was the stuff of nightmares and whole bottles of wine: mal-formed lungs, abnormalities in the heart, Down’s Syndrome.
But if cycling has taught me anything, it’s that life is about playing the odds. Train hard enough, race enough, and soon enough you’ll throw your arms up in victory. More applicable is how we all know that playing in traffic can mean getting hit by a car but in a year of riding you’re more likely to stay upright than not. The odds, as they say, run in our favor.
Human beings are the same way. Our biology is as resilient as rubber and as remarkable as Bach. In 100 clones of our baby, we might only get one with the unmistakable eye spacing of Down’s. One might have a heart like a broken watch and another might possess the lungs of a popped balloon. Nearly all would be fine, normal as sunshine.
All our hopes for the natural path of a labor disappeared with that first dose of misoprostal. Because our first son delivery was induced, we’d hoped this time to experience mother nature’s version of the Publisher’s Clearinghouse Giveaway, that knock at the door that tells you the big day has arrived. The reality is that a seven-syllable condition trumps every parent’s birth plan. So we waited.
And waited.
We reminisced about our son Philip’s birth, something that was easy to do because we were in the very same delivery room. We slept in fitful naps that did little to refresh us. Later, defenses down, with our nurse we counted off the different ways a night with alcohol can go wrong; there were at least four different kinds of spins based on what we could remember of nights that are, to tell the truth, better left forgotten.
Initially, the idea that we knew what day our baby would be delivered was a comfort. It cut down on some of the variables we faced. Shopping for a car seems a good deal less daunting if you’re certain you’re going to buy another Honda Accord. The actual circumstance proved much less decisive; my wife’s labor lasted more than 24 hours. After about 18 hours we couldn’t help but acknowledge that we felt as if we were in a Twilight Zone of labor where we might spend eternity with contractions continuing to come every three minutes but a baby’s emergence staying tantalizingly out of reach.
To break the boredom and remind ourselves of the lives our friends were still living, we checked Facebook between contractions, read encouraging words for momma and scoped all the bragging about who swung the wood at the day’s training rides.
Ah yes, the bike. Wouldn’t that be fun? But who could think of the bike at a time like this? I didn’t have a hard effort in me, but there was no denying I had missed riding for the last three days. Thinking about the bike and knowing what a central role it plays in my life served as a barometer for my emotions, my fierce allegiance to my wife and my unborn child. There was no other place to be. Not to be there would require a coma or death. My bike wouldn’t miss me and the group rides that I missed this week would happen next week, right on schedule.
But those rides were in the future. The future. What might it hold? Between my imagination and that next group ride was the birth of a child. That would change everything, but how big is everything? Would this be a routine birth with a normal baby? Would this be a challenging birth with some hangups? Would this have complications and go Caesarian? Would our child have some sort of profound disability, one that would require so much effort cycling’s position in my priorities would shift, knocked rungs down the ladder of importance into a once-loved hobby?
In a day full of interventions, what brought our child to us was a decisive finger, the Little Dutch Boy in reverse. With less than an hour to go—if my memory is correct—we met the neonatologist who informed us our child was to be whisked away on birth and cared for in a Neonatal Intensive Care Unit, or NICU.
What the what?
Between contractions I was on the phone with friends to find someone who could pick up my mother-in-law and deliver her to the hospital so that Shana wouldn’t be alone when I followed the child to the NICU.
With a final push our child emerged. I stood on tip-toes to get a look at the slimy purple squirm and cried out to my wife, “It’s a boy!” Last time I cut the umbilical cord but this time there was an urgency to everyone present. Even as he made his initial cry, the doctor cut his umbilical and handed him to the neonatologist.
We had yet to touch him. Why was everyone working so quickly? The began to clean him on the warmer and what I didn’t notice immediately was he had stopped crying. Above him, I watched the screen with his vital signs. I didn’t need anyone to explain which was heart rate, which was blood pressure. I watched 160 drop to 140, then 120. Instinctively, I found a spot between my wife and the screen of the warmer so she couldn’t see it. The numbers kept dropping. It was dropping faster than I could comprehend, so by the time I was nervous that his heart rate was less than 100, he was dropping below 80. My resting heart rate has always been low, but this occasion subverted all the joy I see in recognizing a low heart rate. Babies run high, but our son’s rate continued to plummet. The neonatologist was working feverishly to intubate him, that is, add a breathing tube. The fluid volume in his chest, I would find out later, was too great to allow his right lung to inflate properly. And because he couldn’t catch his breath, his body was shutting down less than 180 seconds after being born.
Without intervention, our son would code. I was watching what the death of a newborn looks like. I was watching our son die.
But they got the tube down him and began breathing for him with a bag valve mask. And with that they transferred him to a neonatal incubator and rolled him from the delivery room and down the hall to the NICU. Mayflower movers wish they were so efficient.
I still had yet to touch him. Ditto for my wife.
Did I touch him while he was in the NICU at the delivery hospital or did I have to wait until he was moved to another hospital with a more elaborate and robust NICU? I can no longer recall.
All parents know that touch is crucial in bonding with a newborn in those first moments of life. It’s a fundamental part of the experience, beer to pizza. Every hour that passed that neither my wife nor I touched our son left me feeling anxious and guilty. The experience alone was disorienting, but the feeling that there was something I was supposed to be doing and wasn’t—through no fault of my own—had the confounding effect of frustrating me even as an inner voice chastised me for inaction. But what action could I take?
In honor of his birthday, 2/22, we nicknamed him The Deuce. It also fit given that he’s our second born, and because I felt like his was already getting a second shot at life.
But the nickname was only a placeholder. When our first son was born we realized that none of the names we picked out ahead of time seemed to fit. We had to go through an elaborate bit of paperwork and pinky swears before the hospital would discharge us without having yet named him. We promised we’d come up with a name for him in the next 72 hours and would be back with paperwork filled out.
Having glimpsed the Deuce’s mortality so vividly, I felt a keen responsibility to get him named. It struck me that were something to happen, the clichéd “turn for the worse,” burying a child that never had a name in life would be a tragedy of monumental proportion, a true parenting fail. My wife wondered why the hospital administrators hadn’t started hounding us about the name. I had to point out the obvious: He hadn’t been released.
In fairly short order we arrived at Matthew. There have been a number of men in both our families that were given names beginning with the letter “M.” Choosing Matthew was a way to honor each of them without favoring one over another.
Any Normal Person (updated)
Any normal person wouldn’t be sitting at a computer while his wife struggles to find comfort on the couch in her final hours of pregnancy. Any normal person would have taken a couple of weeks off. Any normal person would keep the personal personal. Any normal person would keep a cycling blog strictly about cycling.
But as has been observed ’round these parts, I’m not any normal person.
Any normal person would admit they’re overwhelmed and at least this much I can claim to share with other, more normal, folks. I’m definitely overwhelmed.
My plan for this week, at least what I scheduled several months ago, was to ride and post in the early part of the week then climb on a flight for Denver. I was to serve as the chief judge for the North American Handmade Bicycle Show. After the show I was to return home and then a week or two later my wife was likely to give birth to our second child.
All that changed Monday. An ultrasound was performed that revealed a problem with our baby. It might not turn out to be a big deal, but it could turn out to be an indicator of a profound disability. The doctors scheduled her labor to be induced Thursday night with an anticipated delivery on Friday, when all the specialists would be easily at hand.
I’ve been working on four different posts and can’t bring a single one of them in the barn. I can’t concentrate. And I won’t be at NAHBS, though we’ve made provisions for me to assist the judges remotely.
Like I said, any normal person would take a few weeks off. However, we’re a tiny operation and our advertisers pay for us to deliver eyeballs. And I write roughly half our content. There may come a day when I can take a vacation or even a sabbatical, but right now, we’ve doing nothing so much as failing to deliver on our promise of at least five posts per week.
I’ll post as I’m able. Writing is how I process my world and without writing, I don’t understand much. And I respect that, even with writing, this may come to an outcome I simply won’t understand.
I’m reminded of what a friend once noted prior to a team time trial: “There will be chaos. Keep pedaling.”
Update: Respecting Padraig’s family privacy, I will just say to all well-wishers that a baby boy was born. Father, mother and child are tired.
Sea Change
In refusing to give up her seat on a bus to a white passenger on December 1, 1955, Rosa Parks unwittingly ignited a revolution in how the United States treated African Americans. It was a pretty simple act of defiance as things go, but by staying seated, Parks ripped the scab off long-simmering tensions between blacks and whites in the U.S.
In the decade that followed President Lyndon Johnson signed into law what was arguably the most radical and sweeping civil rights legislation since the Nineteenth Amendment—which gave women the right to vote—was ratified in 1920. African Americans were given the right to vote, protected from discrimination based on their skin color or national heritage and protected from discrimination in housing. What gave the civil rights movement its power was a societal epiphany, a collective dawning of consciousness about the inherent wrong of discriminating against anyone for their skin color. For reasons that we may never fully understand, sufficient numbers of Americans made their voice heard, a voice that said in effect, ‘This doesn’t work; we’re not going to accept this anymore.’
Of course, the road to equal rights wasn’t smooth or easy. There were murders, boycotts, riots, more murders and deployments of the National Guard to keep the status quo when the cops couldn’t or wouldn’t do it themselves.
I offer that as a backdrop to the recurring themes of today’s news. A majority of the American people have concluded they’re okay with gay marriage. What they’re not okay with anymore are priests and school teachers sexually abusing minors. They’re not okay with the Boy Scouts discriminating against gays. And they don’t seem to be okay assault weapons on the streets. The public not only wants change, they see it as necessary.
In our collective rejection of this old status quo I see a parallel to the civil rights movement of the 1950s and ’60s. We aren’t willing to turn a blind eye to these crimes. My sense is that we’re approaching another societal epiphany, a large-scale sea change, one that will define us as a society that rejects discrimination of any form. Naturally, I hope that this movement isn’t marked by the violence that threatened to overshadow all the progress we were making.
So what’s this got to do with cycling? That’s easy: I see cycling confronting the same issues. I now think Travis Tygart’s pursuit of Armstrong affair is the precipitating event to wake cycling fans from their complacency about the problem of doping, much the way Parks’ defiance was the precipitating event in sparking the civil rights movement. I’ll admit, it took me a long time to see the case in this light, but there can be no doubt that the public at large is now aware of just how deeply ingrained doping has been in the sport.
Most of the cycling public ignored nearly all of the accusations against Armstrong and instead chose to believe the fairytale until the release of USADA’s Reasoned Decision. Through that I hear echoes of white America’s tacit approval of segregation. Pat McQuaid and Hein Verbruggen are little different from the Southern politicians and police chiefs who resisted the new laws, insisting they weren’t going to change how things had been done for generations. Indeed, considering how McQuaid and Verbruggen denounced both Floyd Landis and Tyler Hamilton once they decided to unburden their consciences by confessing the details of their doping, they are no better than Bull Connor, the Birmingham public safety commissioner who directed the fire and police departments to turn fire hoses and attack dogs on peaceful demonstrators during the Southern Christian Leadership Conference’s demonstration in the spring of 1963. Connor, a member of the Ku Klux Klan, became the public face of Southern bigotry, the quintessential example of the old guard that was standing in the way of the equality we all now take for granted.
If it seems like a stretch to compare segregation with doping, consider that there was a time when seemingly reasonable people saw nothing wrong with separate facilities for blacks and whites—it was the law of the land thanks to the Supreme Court decision in Plessy v. Ferguson. Similarly, there was a time when taking performance-enhancing drugs just to get through a bike race wasn’t the least bit scandalous. Times change.
Could it be that the new generation of riders are analogous to what my generation was to the acceptance of African Americans as equals in school and on the playground? I think so. In their outspoken denunciation of doping, Taylor Phinney, Tejay Van Garderen and Mark Cavendish are a lot like the whites who linked arms with blacks and staged protests in the South. It may also be that riders like Levi Leipheimer and Thomas Dekker aren’t terribly different from Southerners who went with the flow until they recognized the tide had turned.
In shutting down the investigation by their independent commission, McQuaid and the UCI have proven to all but those with the most reptilian of brains that learning the full scope of doping in the sport has never been their primary interest. They lack the vision, the institutional spine and sufficient love for the sport to show real courage by allowing the commission to do the job they were charged with. After being booed by the crowd assembled at the recent Cyclocross World Championships, it seems impossible that McQuaid could somehow be unclear on the will of the people, yet he persists with the obstinate bearing of a smoker who won’t give up his cigarettes even after learning he has lung cancer. In that regard we can draw yet another comparison, this time to Arkansas Governor Orval Faubus. It was Faubus who called out the National Guard to prevent nine black students from attending Little Rock Central High School. You can’t help but wonder what he was thinking as he tried to prevent school integration.
It would be obscene to suggest that the issues cycling faces are as serious as the fundamental issues of equality that the United States wrestled with 50 years ago. But because sport is aspirational, a place in which we invest our loftiest dreams, the drama unfolding as a result of doping has held many of us in a disproportionate crisis. Sport is supposed to be a realm free of the clutches of corruption.
Democracy has a way of pushing aside tyrants in favor of more reasonable forms of engaging the citizenry. History remembers Faubus and Connor as villains who stood in the way of equality for all Americans, men who clung to outdated ideas and refused to change with the times. McQuaid and Verbruggen have denied any wrongdoing during their tenures, instead pointing crooked fingers at the riders, the teams and even the fans. They are our Faubus and Connor. History will show them no quarter.
So what might we expect from the future? It’s not unreasonable to conclude the UCI will be freed of the misguided leadership of McQuaid and Verbruggen following their next election. Of course, that is no more likely to put an end to doping than the civil rights movement put an end to the Ku Klux Klan. The difference is that the Ku Klux Klan wasn’t a fringe organization in the first half of the 20th Century, while today it is far outside of the mainstream of social thought. Likewise, drug use was a once widespread practice, but the day is coming when athletes will see doping for what it really is—
the most basic of lies.
