UPDATED: Kickstarting a New Book—Why We Ride
We’re into the final 24 hours of my Kickstarter campaign and I’m pleased to say it has gone very well. Pledges from good folks like you have helped me meet the pledge goal of $20k (and even surpass it). The book “Why We Ride” is now a reality. If you haven’t already joined the party, I hope you’ll stop by. We’ve got ribs on the barbecue and some great beer out back.
On behalf of my entire family, thank you.
Go directly to Kickstarter HERE.
Writing about cycling is a necessarily topical endeavor. From the latest gadget to the doping scandal du jour (année?), writing about cycling means keeping up with the times. I launched Red Kite Prayer with a mandate that centered less on the ‘who, what, when, where’ of traditional journalism than the ‘why’ of cycling itself. I’ve been more interested to publish good writing than to make sure we are the first to publish 300 words about the newest brake set out of China, but then that’s only because I believe that my job isn’t to provide data as much as it is motivation. You can find plenty information out there, but it’s harder to find work that helps remind you of why we stick with cycling even after Lance and the appearance of ghost bikes at an ever-increasing assortment of intersections.
We call those pieces that feed the jones and keep the off-the-bike demons at bay “evergreens.” For me, as a writer, they’re what I live for. They stand outside the typical focus of articles you’ll find on other sites during a given week. Evergreens matter because they find those opportunities to say something true about cycling, something that will be as true in five years as it is today. There’s a good chance it was true the year you found cycling as well. That chance to transcend time and get at experiences common to us all results in a far more satisfying experience for both writer and reader.
Such a book represents a pretty lofty goal. It’s not one I set out to swing at; it took a few years to realize I was circling this particular quarry.
I’ve wanted to pull together a number of my posts into a single volume for some time. While I talked to some publishers about releasing the volume with them, I realized that no one was going to be interested in offering a short run of hardcovers, an option I thought was important to present to my more dedicated readers. I’d been looking at ways to self-finance the printing of the book when I ran across Kickstarter. It seemed the perfect way to marry my desire to offer the collection to readers in both paperback and hardcover formats while hopefully realizing enough profit to serve my larger goal, which was to build a nest egg to move my family into a home in Santa Rosa.
Then the Deuce happened.
By “happened” I mean a couple of things. First, my wife’s search for a job in Sonoma County, which is essential to any move we wish to make, was put immediately on hold when we found out she was pregnant. You may wonder why we were even trying to get pregnant while she was in the middle of a job search. The easy answer is that because she was 41 and I was 48 at the time, we weren’t exactly sure how successful we would be. As it turns out, we’re crazy fertile, at least together.
By “happened” I also mean the Deuce’s NICU adventure. No one planned that, much less wanted it. My wife’s insurance coverage with Kaiser is pretty good, but in the inevitable calculus of health care, the interaction of deductible, co-pays, coverage limits and caps, the Deuce’s real-world value makes the sum the Beer Fund covered look like chump change.
Which brings me to the deeper why for the Kickstarter campaign.
The Beer Fund that my friends Robot and Eric put together following my crash last fall was a stunning outpouring of support. It re-ordered my world and taught me things about community I’d have learned no other way. Six months later and I need help, again.
But I can’t rely on charity. I can’t. That’s a well I drank from once, if reluctantly. I won’t permit myself to do it a second time, at least, not in the same year. But Kickstarter is different because it isn’t charity. The principle Kickstarter works on is patronage. It’s a way for a community of fans or followers to provide financial support that goes beyond simple commerce while still receiving something meaningful in return. It’s a way to further an artistic endeavor by a method that works for your wallet.
In what seems an unlikely event, should the Kickstarter campaign actually earn more than we need profit-wise, whatever is leftover will go toward that aforementioned dream of a nest-egg. One of the reasons we cut the Beer Fund off after only 24 hours is that we had earned enough to pay what turned out to be nearly all my emergency room bills. Ultimately, we were within a couple hundred bucks. Robot and I were of the same mind, that realizing a profit off of your kindness was untenable. Think Lance Armstrong flying on private planes at Livestrong expense distasteful. And that, dear reader, is why it’s so important for me to offer you something in return, something fun, something lasting, a concrete expression of both my gratitude and work.
I’ve come up with a number of different rewards so that there are options to fit anyone’s bank account.
Believe me, I’ve struggled with this. I’d hate for it to seem like I was profiting off my son’s personal calamity. What I’m attempting to do is profit from my work to pay for my son’s personal calamity; there’s quite a difference between the two. One I’m okay with; the other makes my skin crawl.
Check it out here.
Enter the Deuce, the Series
Now that RKP has settled (more or less) back in to its traditional editorial routines and I am doing what is more typically thought of as my job, and that I can also report with no small degree of pride and relief that the Deuce is healthy, seemingly happy and definitely growing, I’m willing to take a moment to respond to a few emails that I’ve received in the last week or so. Not all readers caught the series from the beginning, and as content would get bumped from the home page it wasn’t easy to find, at least, not without a bunch of scrolling.
Below is the full collection of posts that relate to the Deuce. I should note that when I wrote the first post (Part I) I thought that there would be a follow-up, but not more than that. I really hadn’t conceived of a whole series of posts—not that I couldn’t imagine such a thing, but I didn’t anticipate that it would either be necessary for me or anything I could justify as an acceptable devotion of editorial space. Lucky for us I didn’t get a choice.
So for those of you who missed the opening, or simply want to revisit the series, here it is. Thanks for reading.
Enter The Deuce: Home
Philip meets his baby brother, the Deuce.
The Deuce is home.
It’s a piece of information that needs no introduction, requires no preface, begs no questions. It’s a bottom line, an endpoint, a conclusion. Is it all the resolution I’ve wanted? That’s a question I asked myself this morning as I looked out over Santa Monica Bay as I pedaled toward home. I was aware that I’m still not really ready for group rides, that I’m still not back to my old self. I’m done with suspense, with surprise, with anxiety, with all the factors that make stress stress.
Of course, nothing will release me more from the weight of the Deuce’s 37 days in the NICU than just having him here at home.
Home.
Two nights into this and it still hasn’t completely sunk in.
Frankly, after more than 30 days in the NICU, the suddenness with which he went from “improving” to “discharged” could teach jai alai players a thing or two about speed. The day after his doctor removed his chest tube he said to me that they would soon begin discussing when he could go home. In my mind, given how things had moved with all the hurried pace of rush-hour traffic on the freeway, reading between the lines suggested that he might be released the middle of this week. And that would be fine. With the danger seemingly past, patience was something I had by the liter.
The next real surprise was when we arrived at the hospital later that morning and the nurse tending him said to us in a conspiratorial tone, “The doctor might release him at the beginning of the week.”
Oh, well, wait, what? Come again?
My wife turned to me with the high-eyebrowed look of someone betraying a lack of preparation, I knew what she was feeling, what she’d say next. So when she said, “I’m not sure I even feel ready,” it wasn’t necessary.
After all the waiting, all the worry, all the tears, I was surprised that my reaction to his looming discharge was to wonder if I was prepared to care for him. Though he was already five weeks old, his condition had left me with the indelible perception that he was fragile, more fragile than his brother Philip was at two days, when he went home. With his two incisions sutured shut and his various picc lines and IVs removed he was a baby—no more, and certainly not less.
Just a day later the doctor approaches us for our daily consult and says, “I’m going to release the baby tomorrow.”
I’d like a large serving of ‘whoa’ with a side of ‘hang on a sec.’
There wasn’t much to discuss. We made arrangements to allow our son Philip to go with a friend to an Easter Egg hunt while we picked up the Deuce. There were forms to fill out, instructions to listen to, guidelines to impart, appointments to make. It felt a bit like buying a car from a car lot with only one car.
As we went through the paperwork the stoner parents of the 480g baby dropped by for 15 minutes or so. It was the first time I’d seen them in more than a week. I had the feeling we were seeing the first act in what would be a tragedy that would unfold over a lifetime. I hope I’m wrong. I’ll add that I don’t really mean to pass judgment on them, but I can’t fathom the choices they are making; maybe their disconnect is just a coping mechanism but my sense of a parent’s love looks at them and says, ‘No way.’ Even though the Deuce is fine, I doubt I’ll ever get over the feeling that I wasn’t at the hospital enough. I spend more time in Trader Joe’s than these two do at the hospital.
So Matthew was released on Easter Sunday. I’m not a practicing Catholic; it’s a fact that pains my parents, but the whys and implications are the stuff of another work. Whether or not you go to church says little, though, about the spiritual life you live. The symbolism of Matthew’s release on Easter wasn’t lost on me. It was unavoidable. Walking out of the hospital into the sun with him felt less like rebirth than birth itself. It was our first time to be outside with him and there was no denying that was a greater testament to his life than the previous 37 days. This was real life—no safety net. In that regard it struck me that the experience was not unlike what Easter represents, in that Jesus Christ’s rise from the dead was the miracle of his life, and it matters not if you’re speaking literally or metaphorically. And no, I’m not comparing my son to Jesus Christ.
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Our son Philip is three and has shown all the interest in learning about Matthew that he shows in anything that isn’t a toy he can play with—very little. On one occasion I took a photo of a picture of him next to a picture of Matthew and then showed that to him. I thought the equivalence might help bring the lesson home for him and it did. For about 30 seconds. Next!
We arrived at the friends’ to pick him up and before climbing up into his seat, I opened the side door so he could peak in and get his first look at Matthew in person. His curiosity and regard for his little brother expressed a kind of love new to me. It was like learning about chocolate.
This stuff has been around all these years and I didn’t know?
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We’re finally getting to know our son. Really getting to know him. Life in that isolette stripped him not just of his ability to move but the sounds he makes and his opportunity to connect with anyone by locking eyes.
Here are a few of the things we’ve learned about him: He’s a night-owl. Loves to be up from about 1:00 to 4:00 every night/morning. And he’s noisy. He’s got a veritable vocabulary of grunts, squeaks and gurgles. Then there’s his gaze. This kid is taking the world in. Shana and I have compared him to Stewie on “Family Guy.” We have this ever-present sense that he’s scheming and planning, that his opinions and desires outstrip his abilities much the way we kid our cats believe they could run the house if only they had opposable thumbs. The intensity with which he’ll look into my eyes is nearly unnerving. This is not something his brother was doing at this age.
But I like it. I think we’ve both been craving this connection.
At his first follow-up appointment this morning the pediatrician asked if we’d learned the cause of the effusion. His question concerned mechanism, the way a stab wound is the mechanism for blood loss. No, we never learned why. And we never learned why in a larger sense either. Early in his stay in the NICU I asked his doctor at a point when the two of us were alone if this was in any way related to advanced maternal or paternal age. Did being over 40 have anything to do with this? He told me no and then quickly added how there was another baby in the NICU had the same thing but the parents of that baby were of prime parenting age. We’ll never know. He was a 1-in-10,000 baby and though that could have played out in many other ways, we scored the lucky break with a mortal scare, but a condition that was only temporary. My nerves are shot, but he’ll grow up fine.
“Alex, can I have ‘Beating the odds’ for $2000?”
As I changed his diaper following lunch I looked down at him. Two small scars dot his chest on the right; that’s the only evidence left of his 37 days. They’re each about 5mm long. They’ll fade in the coming years, of course, and that’s an outcome that will serve him. The day I can no longer find them will be a sad one for me I expect. They are my one physical reminder of what we went through and for now at least, they are a kind of talisman, a reminder of just what we all have survived, what we are all capable of surviving.
Enter The Deuce, Part X
Just like his big brother, he’s moving, taking the world in.
When reassuring people, we like to say, ‘The dawn brings a new day.’ It’s meant to remind us that the passage of time changes us, that healing takes time, that options that weren’t open to us yesterday may yet be presented to us. Well, we finally got that new day for the Deuce.
Yesterday, Matthew’s doctor removed his chest tube. His total inventory of tubes—the chest tube, an IV and a pica line—had been dropping, the removal of his chest tube was a big step. Originally, the plan had been to wait another day, but based on his x-rays the doctor decided he was ready. The decision may have been driven, in part, by the fact that hours after his IV and picc line had been removed he developed a fever. So, of course, an IV line went back in for the antibiotics. A classic case of two steps forward, one step back.
But in deciding to remove the Deuce’s chest tube, his doctor was minimizing one potential source for infection. Fine by us, but the bigger piece of news was that the medical team reviewing his x-rays had concluded that there was no more effusion. The Deuce was a leak-free zone.
Removing the chest tube was the definitive testament to the Deuce’s condition. As the surgeon had put it before, his was a binary issue. Either he is leaking or he is not.
Well, bitches, my boy ain’t leakin’ no mo’.
The immediate dividends this change in status paid were the very definition of life-affirming. My wife was able to hold him and breastfeed him for the first time in his (or her) life. She’d spent more than a month of pumping her milk five or six (seven?) times per day—so many times I would lose count. And compared to the way both mother and child’s brains are washed in oxytocin—a powerful neurotransmitter that has been called the “love hormone”—when breastfeeding, pumping breast milk has all the payoff of taking allergy medication to soothe depression.
I may not get quite the reward that either of them do by bottle feeding him, but I can tell you that holding him for the first time and cradling him in my arm as I gave him his bottle was powerful medicine for both him and me. It has been so long since he was born—more than a month—that holding him for the first time today was almost like experiencing his birth. For the first time. I haven’t yet had the opportunity to have him hang out on my bare chest in just his diaper, but I’m sure we’ll get that time once he’s home.
He’s got another day to go on the antibiotics, something that reminds me we have a few hurdles yet. Saturday he will be x-rayed again; I don’t know how important it will rank as a step toward his release, but my guess is that the results of that x-ray will be pretty important.
Equally remarkable as this has been his utter transformation since the bottle feedings began last weekend. Almost from the very outset of the first 10ml feeding—he was still being heavily supplemented by a TPN drip—he began acting more like a baby. He became more alert, began turning his head and looking around more and interacting more with us. If I’d been asked to guess, this change in behavior is something I would have anticipated to be more gradual and to have begun after the surgery.
That he perked up following his first feedings feels rather anti-scientific, as if it were the fulfillment of a promise made by some religion posing as science. I find miracles and science to make for poor bedfellows. Put another way, I don’t believe in magic. But there is something in the Deuce’s improvement once he started feeding on his mother’s breast milk that is nothing short of miraculous. It’s a fair word, I think, because it encompasses both the magnitude of his change and my surprise.
As the size of his feedings increased and the amount of TPN he received dropped each day, he has left what seems a twilight existence where he was never very awake and his sleep was lengthy and frequent but never seemed to refresh him. When he wakes now he is inquisitive, looking around his surroundings and moving far more than I ever recall his brother doing at the one-month mark.
When I bring him to my shoulder to burp, he lifts his head and looks around. He’s unsteady, but a lack of strength doesn’t do much to deter him. How he could progress so much in just five days boggles me.
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Matthew’s stay in the NICU is nearing the end of its fifth week. To my knowledge, he is the oldest baby present. We’ve watched babies that were admitted after the Deuce progress and graduate. But despite the length of this stay, the nurses are talking about him as a real success story, an example of just how good the care is, how babies that wouldn’t otherwise have a chance at survival go on to live perfectly normal lives, that by the time they are old enough to inspect their own bodies, the scars of surgery are gone.
There are two other babies in the NICU with effusions. Neither the doctors nor the nurses really share any of this information, but you meet other parents and occasionally you’ll overhear someone talking. One of those babies is the child of the stoner parents who showed up without their ID bracelets. Their little girl was a pound at birth and still weighs less than two pounds.
I’ve not seen them this week; neither has my wife. The last family member I saw drop by was a grandmother who spent her time dissing the mother for not being there. I struggle to comprehend the road the parents are traveling. I can accept under certain circumstances it may be hard to see your child with tubes and wires running in and out of its body, but at a certain point I would imagine that a parent’s love would take over and you just wade through just to be at your child’s side. My heart aches for that poor child that is getting more love from the nurses than she is from her own blood.
The other baby, who had surgery the same day as ours hasn’t recovered as thoroughly as Matthew. While the nurses won’t say anything and we haven’t seen the parents lately—they seem to do most of their visits at night after the dad gets off work—we’ve overheard descriptors that suggest the recovery could be going better. I have the sense that there may still be fluid leaking.
To have three babies in a NICU with chylothorax effusions is unheard of. It’s a one-in-a-million possibility, and while most children get through it, the Deuce’s cohorts in this condition make for a stark demonstration of just how serious the condition is.
We are owed nothing by no one and asking the universe to give us a break is only slightly less silly than rubbing a lucky penny before exposing the results of a scratch ticket. But the heart wants what the heart wants. Right now, what I want is the Deuce home and to cuddle up with him on the couch, me shirtless, him in a diaper, and just let him sleep on my chest. For a week. I want that. I. Want. That.
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.
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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 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.
