“The manner in which life deals the unexpected. So constantly unfinished.”
Colum McCann, Transatlantic
My son Ronan’s time of death is recorded as 715 am on his death certificate, but this is a lie. He died at 230 am of GM2 Gangliosidosis: “a rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.” He had Tay-Sachs disease. The day we are born is the day we all begin to die, but for Ronan that cliché was the truth, and the unraveling happened quickly.
He began his last stages of dying on Valentine’s Day, when his skin started to turn a mottled blue for five and ten minute periods of time before returning to its original color. Sometimes a shadow crossed his face, a change in light so pronounced it produced the urge to turn around and see who (or what) was there. Dark impressions appeared under his eyes and then disappeared, as if they’d been pressed there and then suddenly erased, as if someone were marking him and then changing their mind. Who? A tube delivered fluids through his nose, what hospice care referred to as a “comfort care” intervention although nothing about it looked comfortable, the little tube taped to Ronan’s face with flesh-colored tape so the tape wouldn’t move and shift this tool of comfort to one of discomfort. His father, my parents and my boyfriend and I dangled from each strange and precious moment. We made lunch and put dishes away. We dumped laundry detergent over dirty clothes. We drank water and red wine and said I love you because it was the designated day to express such sentiments. The hospice nurse told us it was “a matter of time.” So we waited.
Mid-winter. A few dry, cracked leaves fell to the ground and made a scraping sound or lay trembling, trapped by a typical wind made suddenly strange, in the brown yard, on the concrete sidewalk. The sky was hard and colorless, a cruel cinderblock above the adobe house where Ronan lay dying.
According to his death certificate–a piece of light blue paper with a vaguely royal-looking imprint from the funeral home that must be presented to prove, as the insurance company calls it, “proof of loss,” a document I would photocopy and file and stare at for months after his death–my son when he died just before the age of three was:
Born on March 24, 2010
In possession of a social security number: 611-81-4007
Inactive in the armed forces, a member of no tribe. Those boxes remained unchecked.
He was a baby, then a boy, and then, after the moment of his death, which is actually not recorded accurately on the certificate that proves he died, which is a way of proving that he lived, he was a decedent.
For days after his death I imagined the crematory fire, and I wondered what happened to his tongue, his eyes, his toenails. These thoughts made me wretch. I wanted to crawl into pictures and hold him. Where was he? I woke up at night, waiting for his ghost to appear at the side of the bed, his scent of powder and prunes to float through the air. I listened for rattling chains. I imagined myself inside silly moments from A Christmas Story or in melodramatic scenes from a reality show about paranormal phenomena. I sat up in bed snorting and shouting. I wanted to punish myself in some way for ever once wishing that he would die peacefully, or at all. I hated most people I saw on the street, without reason and with a force that terrified me. I read obituaries as an excuse to get angry. Beloved wife and mother dies at 92. Dying at 92 is not a tragedy, I thought. Fuck you. And by you I meant all of the people ordering lattes at the counter while I rifled through someone’s left behind paper. Every pundit on the news talking about budgets and bills. Every smug-looking mother–in those weeks every mother in the world. Everyone who dared to laugh. Everyone moving around in a body that was not the body of my son.
I watched a typical Santa Fe couple at a local café. “I want to eat under the brella, Mama!” the little girl cried, although it was the middle of winter and too cold to do so. She was two, her brother about five. Both had pale blond hair. Their parents were toned and tattooed, fit and young. They held water bottles made of recyclable metal and the mother cleaned the table with a disinfectant wipe before they sat down. Swelling before me was this alternative life, this life on the other end of the odds. I rushed out the door before I could shout at them for being alive.
As his official death statement records, Ronan had no descendants. But he did have survivors. I did not want to be one of them.
Ronan was born on March 24, 2010. When he was born he weighed six pounds and 12 ounces. Across the soft dome of his head were wisps of reddish blond hair. Eventually he grew a full head of golden hair that curled up at the ends and at the back. When it grew very long, I would sweep it up into a fountain on the top of his head and secure the shape with hair gel. He smiled and giggled a lot and learned to say one word: gee.
When Ronan died he weighed almost 11 pounds. We had to be careful when we moved him not to dislocate his shoulders and hips he was that bony, that wasted. His breath smelled sour and strange and of the ground. His mouth was locked open and unmoving. His eyes were fixed on what was beyond, whatever that might be. Every bone in his face was visible. The fabric of his onesies pooled around his elbows and knees. I could literally see how he was made, where the heads of the bones eased into their sockets, and how his illness was unmaking him, a yarn without price rolling away. I could circle his biggest bones by touching my thumb and pinkie finger in an awkward circle, and this physical act, so simple for me, requiring no thought, was a movement so advanced for the limitations of Ronan’s brain that he was never able to do it. In those final days of my son’s life, I thought I would die, but knew I would not, which made me want to die even more ardently. Still, I lived. How? Perhaps I didn’t live at all but existed, half-alive, half-dead, in some liminal space. There is no proof of those final moments, no photos, no words.
When he was nine months old, Ronan was diagnosed with Tay-Sachs disease, a rare genetic neurological condition with no treatment and no cure; it is, as a good friend described it, “the Hitler of all diseases.” When I understood that Ronan’s brain would gradually shut down and that he would die, and horribly, like some tragic character in an unbearably sad novel, I didn’t actually understand a thing. I didn’t know what it was like to watch a body give out, reach its limit, and then end. I imagined it was possible to have dignity in death, but there isn’t, not really. It’s messy and awful and then it’s over and silent and the person is gone. “Dignified death”: two words I repeated to myself in the years before Ronan’s death, as if I could give him that gift of dignity, and words that often slip from my mouth now, even though I don’t believe in their pairing. To wish for dignity in death is a kind of ambition, and in this final stage we will reach in our lives it is a useless concept, and perhaps in every other stage as well.
In those years of Ronan’s progressing illness, I felt an obsessive, rattling, almost compulsive desire to live, to succeed, to create, and I also understood that none of these achievements truly mattered, because they would not save my son, and they would not save me from watching his death. The world was strange and jagged but we were together in it, spinning inside some powerful centrifugal force that is the bond between parent and child.
I imagined Ronan’s death all the time after I learned I’d be a witness to it, but I was totally unprepared when it actually happened in those coldest hours of that coldest night of mid-winter. I wonder if anyone ever is prepared for any kind of loss. I think of the people who lost limbs in the many wars that have raged over the last few years (and since the beginning of wars, or the beginning of time); I think of the people who lost limbs in the Boston Marathon bombing in the spring of 2013; I think of my own limb loss, at four years old, and the way my doctor and my parents tried to tell me a story about what was about to happen in the days before the operation. You’re going to sleep now, and when you wake up your body will look and feel different, but it will be okay. When my parents patiently described–one of your legs will be gone–what would happen to me I probably sniffed at them and asked for a cookie. What does preparation look like? I’d like to know. Or maybe I wouldn’t like to know. Or maybe I wouldn’t like to know that nobody knows. Does anybody know? How do we ever prove what we have lost? Who weighs it, quantifies it?
When Ronan was dead my mother and I dressed him in his white fleece “MAX” suit inspired by the book Where the Wild Things Are. Then we wrapped him in a white linen shroud embroidered with his name in green and blue, little matching waves stitched around his name. I had selected the fabric and the yarn at a Joann’s Fabrics at a strip mall in Phoenix with my friend Tara the year before; she stitched the shroud, and for almost a year I kept it folded up in a blue plastic bag at the top of my closet in Santa Fe, waiting for the day when I would need it. Part of me never expected to need it, but when the undertaker walked carefully and quietly into our house as the sun was coming up on the morning of Ronan’s death and offered to hold his bird-weight body in her lap rather than put him in the back of the car, as was the custom when removing the deceased from a private home, I was glad I had asked Tara to make the shroud, and that she had accepted, and that I had remembered where I kept it in the closet. I was glad I had anticipated this moment thoughtfully, planned for it.
After the funeral van (I had expected a hearse, and felt a moment of strange, almost euphoric happiness for this very normal looking van) drove away, I stood in the doorway with Ronan’s father, who had the hood of his sweatshirt up, and felt bolted to the world and untethered from every tangible, known, or valued thing. I thought, I now have to make something of my life, because my boy has been driven away in a gray mini-van, and he is dead, having never had a chance to make anything of his life, or make a single decision about how to direct it or live it. I also thought, I could care less about publishing another book, staying in shape, getting the perfect teaching job, or anything at all. If there is an all powerful being in the business of throwing lightning bolts like lethal javelins, now is the time for him or her or it to take aim. And finally I thought fuck this world and all of the people and things in it. I felt relieved and gutted, furious and insane. My friend Julia came over and kissed my face. I ate a bagel. My neighbors never said a word to me, although some of them were getting into their cars that morning as Ronan’s body was driven away, beginning their commute, still alive, still making lists and plans, and very soon after that morning I moved away with my sadnesses and they were unburdened from whatever feelings they may have had about my situation. My landlord, over the intervening weeks, was concerned about the logistics of how and when I would be moving out. I wanted no happiness in that house ever again and wished misery for everyone inside it. I wanted it burned to the ground. Months later, when a tornado ripped the roof from the house of my aunt and uncle’s house in Illinois, the two of them clinging to a shower pipe in the downstairs bathroom, telling me later you could not believe the noise, we thought we were going to die I wished that a natural disaster had hit the place where Ronan had died. A dramatic hole in the ground, a roof of sky, would prove that something had happened there. Otherwise who could possibly live there? I longed for those old Sunday school stories, for stones rolled away, a shroud on a bench, some apparition floating in a cave saying I’m just fine. Proof. Provide it, show it, give it to me.
For nine months I drove by the funeral home at least once a week, thinking I would walk through the doors and thank the woman with the long dark braid and thin fingers who had showed up at my house on the morning Ronan died. I would thank her for her kindness. I never did this. I imagined the cold morgue with its loud metal drawers, and then the cremation fire, and my stomach flipped and I drove through the stop sign and into the strange and punitive world. I drove by the house where I lived with Ronan and his father and then with only Ronan, and imagined (then worried, then hoped) that I would see myself walking out of the front door, Ronan still living and dressed up for a walk in the cold (puppy hat, neck support, abundant blankets), my own breath visible in the air, the two of us still a kind of unit, going out into the world. I hoped I’d see myself in some alternative existence, the veil between this world and some other imagined world thinned. I imagined myself as a character in a Dickens novel, the ghost of my own past, wonderfully plagued by impossible circumstance, visited often by the dead. I wanted to see Ronan with my eyes open, to hold him with the same hands that put food in my mouth every day.
This was not the way it was supposed to go, the way my life was supposed to turn out. I’d had some struggles–limb loss at the age of four which led to a succession of eating disorders and food phobias and intense body hatred that plagued me and still does. I had a warm-up marriage to someone I fell in love with over written letters, which at the time I thought was romantic, and then when I was certain I was a grown woman, a full-fledged adult, I married a man I thought was the kind of person with whom you make plans, grow old, die. We decided to have a baby, and then we did. Nine months later that baby was diagnosed with Tay-Sachs disease. The gene must be carried by both parents; I was tested, but not for all possible mutations, and it was into this crack of genetic chance that Ronan fell, an unlikely cliff drop, a “freak” accident, but what about an accident isn’t freakish? I gave birth to him; I might as well have pushed him off that cliff.
Although his father and I didn’t know it, that day of Ronan’s diagnosis, driving home from Albuquerque in January 2011, the light strong and cold and winter-bright, was the end of our marriage. I no longer know the person who was Ronan’s father. I don’t know the person who chose to marry him, and I do not know the ambitious, striving person who wailed in the backseat that day, perhaps mourning without understanding quite yet what she was losing or, if time could fast forward as it does in a Virginia Woolf novel, what she had already lost. The woman I had been died on that day. All of her anger, envy, vigor for success and achievement died also. It was, in a sense, an instantaneous and painless death. The recovery was more difficult; how do you move from an ambitious person with many goals to a person whose only ambition is simply to live, and sometimes not even that? What will you do now? people asked in the days and months – now nearly a year – since Ronan’s death. Live, of course. But how is living different from survival? How do you prove you’re even alive if you no longer recognize the thoughts that move in and out of your brain or the patterns of your own breath, once so known to you?
My son Ronan was often called the Buddha. He shared aspects of that historical and spiritual figure, at least the Buddha that is depicted for modern spiritual questers: silence, a sense of peace, total immobility and an ability (in Ronan’s case, his only ability) to sit for hours at a time without moving. Because Ronan’s cognitive function was stalled at six months old as a result of the neurological disorder that eventually killed him, he let life happen to him; and, eventually, death, which was a known outcome for him by the time of his diagnosis. He literally let time pass, and pass it did, fast and then slow, agonizing and then elastic. Then the void.
Nobody is prepared for loss, which is necessarily linked to the passage of time. I believe we’re equally unprepared for gain as well. I’m expecting a child, a girl, in March. My partner Kent and I were ambitious about conceiving, about starting a family, in part because we fell into a deep adult love–a feeling of falling that is always gracious and generous and large–while we watched a child die, an experience that is telescoped to a narrow room, lightless and cold. The contrast made us want to kick back against the world, against the beauty and unfairness of it. Now we are building, a different enterprise with the same threat of loss imbedded within it.
Life: so easily given, so easily taken away. We’ve seen our daughter several times on the big ultrasound screen, rubbing her eyes in the funky 4D images that make her look like she’s lounging in some kind of bumpy uterus moon crater. I half-expected an embryonic astronaut to float through on a non-umbilical cord and plant a flag near her head. All of her limbs have been accounted for, the chambers of her heart measured and observed, her brain examined from above, her heart beating out her living time in the dark and quiet room, an insistent, impossible thumping. That’s the blood moving in and out of her heart; that’s her kidney; that’s her bladder. Vibrating ink blots on the screen. I feel her moving, as if the belly is being scooped out, hollowed and hallowed. Is this how I felt while I was pregnant with Ronan? I don’t like to think about it, because as soon as he was here, it seems, he was already gone. I’m scared, excited, elated, totally untrusting and yet also feeling saturated by, incredulous with luck. Luck, by the way, being a concept I do not believe in. And yet here it is, blinking in the dark, saying, “Hey, look at you, lucky girl! Pay attention!”
A good friend told me once, when I was in one of the many unlit places that were a part of the progression of Ronan’s illness, that suicide was not an option. I really wanted it to be. I wanted to have it there, waiting, a promise of a total and permanent release from pain. Was there a world after this one where I might meet my boy again? If so, there was only one way to test that theory, one way to get there. This friend postulated (and, I think, reasonably so, and gently and compassionately so), that although suicide is not necessarily an immoral choice, it is unethical. He went on to explain that it’s unethical because we don’t know what’s going to happen in the next five minutes or five days, let alone the next five years. And refusing to give or receive any joy or happiness or goodness you might spread or experience during that future time would be illustrating a serious lack of ethical integrity. Or maybe it was moral integrity. Maybe I’ve confused the two. In any case, his point was that life is about your place in the world, your role, what you might do. You don’t have the right to take that from yourself. Maybe it’s less about destiny and more about determination.
Ronan died on February 15, 2013. By March 24th, 2013, when he would have been three years old, I was divorced from a man I no longer recognized and for whom I could resurrect almost no tender feeling. Six months prior to that, in August, I had fallen in love with Kent, the father of my daughter. I think it happened with a single gesture, when he lifted his big hands in the car on our second date to tell a story on our way to dinner. Light was shining through the window. I was laughing. His hair flipped up at the ends. He was big and strong in the world, and happy. Curious. I couldn’t believe in that moment that I had so faithfully and ardently believed that I would never be happy again, because there it was, happiness, mercifully uncomplicated. I could have split down the middle with the delicious, unexpected pain of it. And the feeling could not be picked at; it just was.
Is it unkind to say I never would have married anyone if I had known it was possible to feel about a man the way I feel about Kent? Probably. But maybe it’s not such a bad thing to be unkind, especially if it’s the truth. Sometimes I wander around the house we share together, feeling heavy, getting heavier, often forgetting that I need to (really) wear a bra for the first time in my life, and wondering who I am. I feel compassion for Ronan’s father in fits and starts, it comes and goes as quickly as the light changes through the long windows in our front room, and although I cannot cry when I think about Ronan’s final days because the images are too unbearable to let the emotions even sniff around in that direction, I can cry for Ronan’s father, and for his sadness, and for the existence of cruelty in all of us. I don’t like the feeling that nobody wants to talk about Ronan anymore, or that he’s forgotten. In meetings or at dinner parties, listening to people talk, complain, emote, I sometimes long to scream Do you think I really give a shit or that any of this matters? A child suffered and died, my child. Don’t cry about not getting a promotion. Don’t cry about your bad day, your bad luck. Never cry about anything ever again. That is certainly unkind, and I’m careful to wipe those thoughts away as quickly as possible.
Ronan existed, he was, and then he did not exist, and he no longer was. Now he is a collection of sense memories (his skin, his hair, the sound of his voice, his toenails, the way his hair fuzzed at the back of his head after a bath), but memories are the intangible blocks of narrative and story. Memory is not presence. It is not a person. A few weeks after Ronan died I heard a mother screaming at her little boy in an airport bathroom. I guessed by the size of the shoes I glimpsed under the bathroom stall that he was about three years old. She cursed at him and I wanted to rip her head off. But what would I say? Hey, you’re lucky to have him, my kid died, don’t hit your kid you stupid bitch? She would only punish him later. Just another no-win situation. Just another situation that can’t be fixed.
There are frameless pictures of Ronan that are curling and dusty; other pictures I pinned up to a small corkboard before I knew he was terminally ill that have never been moved; a sad, wallet-size photo of him sits in a top desk drawer. I was angry with him when he sat for that six-month portrait. He wore seersucker pants and a white polo shirt. He wouldn’t smile for the camera because he couldn’t see the camera. And I was angry, or frustrated, or some other stupid emotion that masked my real fear, my real instinct, which was that something was terribly wrong with him. What happened to that person, that misguided mother? I hope I never meet her again. I wish her forever dead and I want no proof of her existence.
Everything moves to dust. I learned this as a child in church. Everything comes from some totally secret and mysterious place that it is now possible to partly illuminate with a sonogram machine operated by a stranger while you’re lying on a table in a white (usually cold) room with your legs spread and propped up in the air. This life in a place–marked–where a moment before there was none is so commonplace and fleeting and yet also totally remarkable. Death, and then, in the middle of it, life. Your child dies and you get pregnant again. One week your growing child is compared to an olive, and then slowly graduates to being compared to a successive number of fruits and vegetables (lemon, avocado, tomato, etc.). A boy was born in the world, already doomed by genetics, in March 2010. A girl, if all goes well, will be born in the world in March 2014, and born to do what? Are we born to do anything, that phrase that’s usually tossed around during the Olympics or during an election year, or are we just born, and then chance and chaos take hold? Is this your first child? No, I had a son and he died. This is the new crappy conversational exchange that is always brutal and brief.
I am not prepared for this next part of my life any more than I’ve ever been prepared for anything, regardless of my notoriously earnest striving. Expectation is not the same as preparation. My preparations have not amounted to shit, it turns out. I don’t know what to expect while I’m expecting, and I’d like to burn every extant copy of that book. Expecting disaster is decidedly unhelpful, but to expect otherwise seems foolhardy, given that there are babies still being diagnosed with Tay-Sachs, a disease that is still treated like a kind of dark mystery. I can’t be smug about being pregnant because I’m too superstitious and I find smug mothers particularly exasperating and disheartening to the point of howling annoyance, but I’m also superstitious enough to worry that if I’m not appropriately grateful this baby will be snatched from me. I ring bells meant to cast away evil spirits, given to me from a friend who also lost her child. I hang the evil eye on my bedroom wall. I’m watching you, I think, but who am I watching, and what for? To whom can I prove that I can do this? If proof of loss is such a mystery, what would proof of gain look like?
This fall, seven months after Ronan died, I saw my favorite teacher from graduate school in San Diego. As we stood up to leave the beachside café where we had met for coffee he said, “God has a lot to answer for.” We, the living ones, have much to answer for as well. We have to answer for our happiness, our days, the shining moments we know and don’t know. This is the true proof of loss: that we continue on, breathing and loving and trying to be happy. When we still have a choice–and a chance–to strive for what remains, today, unfinished.