Perhaps this is the twenty milligrams of Celexa talking, but it does in some crazy way make sense that Annabelle and I would have a child with these unusual types of birth defects. Just about everything in our lives is a little off. Our house is much smaller than it appears to be from the outside. Annabelle’s butt is much bigger than it looks when disguised in clothing. She’s told me many a time that my hair is far grayer than it appears to me in the mirror. Doors don’t close all the way and they squeak every time they’re opened no matter how much WD-40 we apply; the drain in the tub doesn’t quite close so it can never properly fill, leaving the bather scrambling to keep adding water; Ezra’s bedroom floor has a slant that causes his desk drawers to be constantly open; and we can’t get the outdoor floodlights to shut off during the day, even though they are on light-sensitive timers, so by the time we actually need them at night they’ve burned out. Plus the refrigerator door won’t properly seal; none of our eclectic furniture matches; my brand-new computer chirps like a cricket; our backyard tree grew into our neighbor’s yard, breaking the Spanish garage roof tiles and costing us more than a grand to fix; and we never get it together enough to send out Christmas/New Year’s cards until well into spring, if at all. Annabelle stuck our adorable, sweet-as-pie cat with the smelly name of Stinky and our superhandsome, seemingly normal standard-issue kid has all these quirky anomalies inside of him.
When the shit hits the fan, so to speak, Annabelle has been the one who does all the research and consults with the experts, while I adopt a wait-and-see approach and when the ball is passed to me, such as giving Ezra one of my kidneys, I’ll be sure to take it right to the hoop. Call it Zen acceptance, or some strange faithless sense of faith, but I believed that maybe by the time Ezra became a teenager there could be a cure even more effective than a transplant. Things do change and, unlike the Middle East and the traffic in Los Angeles, sometimes they can even get better.
She Says
Jeff insists that I made a comment about his fascination with all things anal on the day our son was born. I have no memory of this, but I did say, “No anus? What happens if he’s gay?” “We’ll be making him one,” our doctor informed us. “Great,” I answered. “My son was born in Los Angeles and they’re already making him an asshole!”
I missed out on Jeff’s hospital weepalooza because I was otherwise occupied with morphing into a character from a Russian novel. Anna Karenina couldn’t hold a candle to my moroseness. From my hospital bed, I phoned our friends and family, and instantly the cheerful muffin baskets we’d received with cards saying “We can’t wait to meet him!” were replaced by somber flower arrangements bearing notes announcing “Our prayers are with you.” I didn’t have a train to throw myself under, but I was able to heave myself into a wheelchair and take up residence in front of Ezra’s little isolette. With all of his appliances and the black silk sleep mask they had placed over his eyes, Ezra looked like a sickly baby rock star.
The next day Jeff and I made our first trip together into the neonatal unit. Oddly enough, the staff greeted us with confused looks. Finally, the nurses drew me aside, “We really wonder what it is you do exactly,” and they showed me the form Jeff had filled out when we arrived at the hospital. Where the form asked “father and mother’s occupations,” he had written “divorce attorney” and “balloonologist.” Jeff’s father, Bob, is the divorce lawyer in the family, of course, and his mother had at one point owned a novelty store that specialized in party-themed balloons. It truly hadn’t occurred to Jeff that they meant us. We were the parents now. Jeff had failed our first test as parents and I had something to tease him about until the day we die. I got my comeuppance not long afterward when we were informed that our baby’s esophagus was too small to aspirate his fluids. This meant that breast-feeding was out and the dreaded pacifier was actually prescribed to satisfy his need to suck. Ezra would also be required to sleep in a crib on a slant so that when he was fed through his tube, gravity would help the formula slide down easier. Thus ended the family bed idea, too. A parent for one day and the only real plans I had made were out, and Jeff, who had correctly predicted the pointlessness of my planning, now had something he could tease me about, too. All of my postmodern, enlightened motherhood posturing was instantly wiped away. I just wanted my kid to live.
People joke that children don’t come with owner’s manuals, but ours did; we were just too idiotic to understand it. When we got home from the hospital, we were afraid to be left alone with him. That’s when we entered the Kafkaesque labyrinth of home health care workers. It wasn’t just that the nurses were often incompetent; sometimes they didn’t even show up. Sometimes they felt the need to wake me up at three a.m. to inform me they were only staying the rest of the night if I paid them extra money under the table. One lasted less than fifteen minutes. Though her name has been forgotten, I will never forget her long fingernails—really, they were something akin to paring knives. Imperiously she strode into our home, and then took one look at Ezra and announced, “This isn’t for me,” wrapped her talons around her handbag, and disappeared forever. And she billed us later. I’m going out on a limb here, but anecdotal experience tells me that the home health care worker sector attracts more religious fanatics than other professions. Not only did we now have our friends and family praying for us, we also had baby nurses of all denominations exhorting the Almighty: Jehovah’s Witnesses, Catholics, Protestants, and a Seventh-Day Adventist. How desperate were we? We even hired a Christian Scientist who didn’t believe in medical intervention.* One of the only things Jeff and I found common ground on at this time was that we accepted their prayers. We were just too tired to refuse. After the initial crew we graduated into more-secular nanny types, but it seems as if there was some sort of tacit requirement to be a little eccentric to even want to take on the challenges of a baby like Ezra. I have fond memories of my favorite, Penelope. A salt-of-the-earth British lass who was “daylighting” as a nanny while in the evening she pursued her true life ambition, which was to become a bartender and make a living on a traveling darts team. Sure, we might come home and she’d be sleeping off a hangover while Ezra was in her care, but she could whip a colostomy bag on faster than you could say “‘enry ‘iggins” or “Another pint, please, mate!” Penny was my favorite because not one of our family members was able to deal with Ezra when his clothes were off and all his appliances were out in the open, but Penny was completely unfazed. Or she was too drunk to care.
We were just completely ill prepared for parenting as a science experiment. For more than two years we needed to record every ounce of liquid that went into Ezra’s body. I am not good at math. I cheated my way from the multiplication tables through algebra. I didn’t fill in most of the math portion of the SATs. Jeff, on the other hand, tried to do his math SATs, and somehow managed to score even worse than I did. Between the two of us we managed a subpar level of competence that was good enough to feed our baby, but poor enough to rightly suspect that each of us was doing it wrong and was off by precious ounces. We fought most viciously during the middle of the night. If our house had been wiretapped, you might have thought that we were running a meth lab: Male voice: “How many ounces of liquid did you pour in this morning? I can’t read your handwriting.” Female: “I can’t remember!” Male: “What were you thinking?” Female: “At least I write down what we’re doing!” Male: “But you have no idea what you’re doing!” Female: “Right, but I’m writing it down anyway, you idiot! You don’t keep track of anything! We can’t do this together. Get the fuck out of my way, I need to mix up a batch!”
Jeff says he still loved me. He just hated everything I did and every decision I made, and he made it clear he didn’t agree with me on a single course of action that had to do with Ezra’s care.
Jeff says we stepped through a portal into an alternate reality. I was certain we had fallen through the looking glass into a world that was always there, we just didn’t know it existed. While other families are cele
brating holidays with their newborns, families of kids with chronic illnesses are camped out in hospitals. Somehow, during the first two years of his life, Ezra’s emergencies always took place on holidays. Thanksgiving, Christmas, Fourth of July? But Big Mac never failed to materialize. We lost faith in each other, but Columbus was convinced Ezra was strong and resilient and sometimes that was the only thing that kept me going.
During the time that Jeff was fantasizing about a life of seducing women with his tale of our child’s rectal woes, I fantasized about becoming the Martha Stewart of the parents-of-chronically-ill-children set. I was sure I could beat this thing and become the best mother of them all—if only I could wrestle control of the situation and didn’t have to deal with Jeff’s bothersome opinions. As I fell asleep at night, I pictured myself on the Today show exhibiting the new and improved colostomy bags that I had whipped up in my spare time. Why not a bag for every season? Blue-and pink-shaded Easter bags, a fall bag in the shape of a pumpkin. Immaculately dressed and coiffed, I’d hold my kid in one hand, feed him through a tube with the other, sort medical bills with my teeth, all the while describing how I had adapted to my unexpected role as parent of a chronically ill child. “I’ve had to make concessions,” I’d confess. “Sure, it wasn’t my dream that my kid would make the cover of the anorectal malformation magazine, but hey, a cover is a cover!”
In my real life, every day saw new examples of my failure to be anything like Martha. Once I was outside a department store when a poop rolled out of my son’s pants and I kicked it under a decorative shrub. A woman who witnessed this act hissed, “I saw what you did!” Yeah, well, so what, that’s a woman who’s never changed a colostomy bag in an airplane bathroom! But I knew that Martha would never have done that. Meanwhile, I developed a twitch in my eye, I started taking Xanax and SSRIs,* my clothes were stained with bodily fluids and X-ray contrast dyes, and my coworkers’ patience was tested by my need to constantly reschedule shooting days to accommodate Ezra’s frequent surgeries. In fact, on our anniversary, during that first year of Ezra’s life, Jeff valiantly tried to instill some romance into our lives, but my work ran late and Jeff spent most of the romantic meal he had planned for us being pissed off at me and drinking alone. With every area of my life in disarray, I gave up on perfectionism and went on a campaign to pass as a normal mom.
I tried attending a neighborhood Mommy & Me group. The other moms would go around the room and share: “My husband just doesn’t understand—he dressed our daughter in a chartreuse onesie after I told him I wanted her in mauve.” My turns usually sounded like this: “You know, those onesies are just impossible to get over a colostomy bag. Especially when the bag fills with gas, which it does a lot. If I don’t empty out the gas every hour or so, it looks like he has a basketball growing out of his side! Anyhoo …” Silence. Looks of anxiety and suspicion. I know what they were thinking. Thank God I’m not her, and I wonder if she did something to cause those birth defects so I can avoid it when I have my next child. I know this because they’d grill me on how my pregnancy had gone, my diet and genetic history. The moms were really trying to be nice, but for the next few years when I’d see one of these moms around town, they’d look at me with pitiful glances and slink away.
So, yes, I found a different kind of parenting group. But Jeff is completely wrong that this was a symptom of becoming unhinged. It was how I stayed hinged. The leader of the next group was a very kind older woman, a therapist, whose grandchild tragically was born with a very vital organ located outside his body. One mom had a daughter who was facing heart replacement. Another couple had an adult daughter with limited mental capacity, yet these amazingly resilient and devoted parents spoke enthusiastically about trips they took in an RV specially outfitted for her needs. It would be accurate to say that each family faced harrowing obstacles, but I found them inspirational. They helped me put our problems into perspective, and besides, Jeff exaggerates; there was not one family with a crustacean for a child.
It’s also true that I found great comfort in the support group for kids born with no anuses and we did have a party at our house for the Southern California members of the Pull-thru Network. They were an easy group to please; while other kid parties focus on themes and entertainment, these moms just wanted to know how many bathrooms I had at the house! This loose-knit group of families offered me comfort and useful little tips on things I never dreamed I’d need to know, like skin salves for stomach acid irritation caused by a leaky gastrostomy tube. They also saved our lives. One night when Ezra was about four years old, I called a VACTERL mom whose number was listed as the coordinator of our “medical supply closet.” I was hoping to donate some leftover gastrostomy feeding tubes to another family. This mother, Kathy, alerted me to a condition called tethered cord. I had no idea what she was talking about. She explained that the spinal cord is something like a rubber band; it is supposed to taper to a thin filament as it reaches the sacrum (the triangular bone at the base of the spine that joins to the hip bone on either side and forms a part of the pelvis), affording the remaining vertebrae at the base of the spine a wide range of movement. Children born with the condition referred to as tethered cord can have a thick cord, or “fatty filum,” wrapped around the sacrum that eventually, due to the growth of the child and the stretching of the spine, can cause the cord to snap, resulting in paralysis and incontinence, and unfortunately, once the cord has been damaged, it can’t be repaired. It’s a horrible condition associated with the better known and also terrible spina bifida. Remediation requires a neurosurgeon to carve into the vertebrae and untether the cord while employing enough dexterity to avoid accidentally impairing brain function or causing motor function damage—it’s a hoot! As I hung up the phone with Kathy, I remembered that our son had, on one single occasion, complained of back pain. When I alerted Jeff to this, he couldn’t recall that incident. Both Jeff and Dr. McAlpin felt sure Ezra didn’t have a tethered cord, but I insisted that he have an MRI. I certainly didn’t want the results to be positive; however, it pains me to admit that part of me was aware that a positive result would represent a vindication: it would prove that I hadn’t been responsible for ordering an unnecessary procedure that at Ezra’s age required sedation and always carries some risk. We found out the results immediately. The solemn looks on the technicians’ faces as they wheeled Ezra out of the MRI told us my hunch had been correct. That was V for vertebral. Ezra now had an almost clean sweep of VACTERL anomalies. It was devastating news, and it was a hollow victory for me. We were advised we could wait to see if symptoms worsened, but Columbus called and said if it was his kid, he would schedule surgery immediately. In fact, he had a neurosurgeon standing by on call.
In yet another example of how we experienced events differently, while Jeff was exhausted by the surgeries, I was oddly energized by them. I found them comforting, even relaxing. Each reconstruction procedure, even the spinal cord untethering, as harrowing and exhausting as it was, served to channel my anxiety into specific, defined, and immediate goals. It felt proactive. We weren’t just waiting out yet another prognosis. As long as I was busy, it gave me the semblance of control over our destiny. And at least we weren’t home alone; at the hospital I could sleep because there was round-the-clock help!*
I liken those first few years to training for a triathlon. Just when you finish the bike ride, you have to jump in the water and swim, and then, oh yeah, you have to run. I’m not really cut out for endurance of any kind. My sister should have been the one with the kid with problems; she once did an Ironman. The closest I have ever come to any sort of athletic competition was the time I tried to see a full twenty-four hours’ worth of plays at the Edinburgh Theatre Festival. That was in 1989 and I’ve been exhausted ever since.
In some ways, Jeff and I became more isolated as Ezra’s reconstruction process went along. Once Ezra was appliance free and had a normal appearance, at least in clothes, friends would inquire, “He’s OK now, right?” Following his birt
h, I spent a lot of time reassuring pregnant friends that just knowing us would make it impossible, statistically speaking, for their kids to be born with Ezra’s birth defect. I made that up. It’s not true but it sounds true. Even members of our family grew inured to our drama and they wanted closure. My own husband didn’t seem to want to know that our kid had a chronic condition that required daily attention, most likely for the rest of his life.*
And then just when we thought we knew what we were facing, we heard more bad news. We were completely blindsided by the new diagnosis about our son’s kidney when he was seven. The kidney’s longevity was put into question due to its official characterization as “poorly organized” (which I assume is a trait inherited from me). Our nephrologist told me in our annual consultation that Ezra had a 95 percent chance of outgrowing his kidney in his adolescence. She predicted he would need a new one and was very upbeat about renal compatibility and the new transplantation drugs that are far less toxic than the old ones. The day I got the news, I lay down right there on the floor of the pediatric nephrology clinic and cried. After I told Jeff, he was so Zen in his acceptance that he refused to believe I had heard correctly and insisted we call our doctor so he could hear the news for himself. After we hung up the phone, Mr. Positive Thinking said, “A five percent chance of lasting—not bad.”
This is emblematic of the general position Jeff has adopted. An attitude that, I suspect, reveals a vestigial magical thinking superstition. Though both of us enjoy a shared mistrust of religions, Jeff takes it to an extreme. He claims to be something of a Sam Harris acolyte, espousing a desire to see an end to all organized religion, far surpassing my own atheistic, secular humanist tolerance for all faiths. However, Jeff postulates that if he just continues to think positively and hope for miracles, Ezra’s medical conditions will simply disappear as he gets older. This is being optimistic, he insists. Said point of view places Jeff squarely alongside Learning Annex seminar junkies and the famously superstitious, like Sharon Stone, who announced that bad karma had caused the 2008 earthquake in China. Who knows where this will lead? Will he advocate a return to sacrificing virgins in volcanoes, learn to bend spoons with his mind, or master the art of manifesting abundance in a one-hour seminar? My Zen husband also forgets that for at least three years after Ezra was born, he would turn to me, out of the blue, and ask me to list everything I had consumed during my pregnancy. He suspected that my having eaten sushi, which I did maybe twice while pregnant, was behind Ezra’s birth defect, even though there is no known cause of VACTERL.* Meanwhile, Jeff characterizes me as a pessimist, but I predict that he’ll be right there next to me, sucking down tuna juice from a knife hole in one of the sixty-five cans of tuna fish I’ve warehoused in case of an earthquake, fire, or flood. Should this come to pass, he’ll never let me forget that I’ve forgotten to store a can opener, but I say tuna juice will be better than nothing!
You Say Tomato, I Say Shut Up Page 11