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On Sudden Infant Death: the Unrepresentable

Living in New York City as a graduate student and young professor, thoughts of having a family were not only far from my mind, I deemed the very notion of having a child as abject. It was not uncommon for me, when being asked for seating preference in a restaurant, to point to the table with children and exclaim, “Anywhere far away from them.”

The joke was on me, however, when years later I decided to have a child through IUI (intrauterine insemination) and I became pregnant. I was quite innocent about the entire process since I knew I wanted a loving relationship in my life and simply had found anything but this with my previous partners, the last of whom stalked me for well over a year. I had also come to a personal acceptance of my potential to nurture and love a child and to be a better parent than my own mother who currently holds the honorary Joan Crawford Prize of childrearing. In short, I knew I wanted a healthy and loving relationship with a human despite thinking, for much of my adult life, that the only loving relationship I would ever have would be with another adult. Thanks to my ex-the-stalker, my thinking on this subject changed as I came to understand that creating my own family—even and especially without a partner—was suddenly a possibility.

Upon getting pregnant I continued the renovation of my house, I worked steadily upon research and book projects and I undertook the search for that person who would help take care of my child. I was by all measures extremely fortunate with a full-time job in academia which allowed me the personal finances to afford the freedom of having a child on my own. I knew I was extremely lucky and I ran with this newly found desire to create a family.

Dealing with pregnancy as a single woman revealed a world of sitcom hilarity and ethnographic realism. One man jokingly told me he would have helped me get pregnant “the natural way” saying, “Now why did you do it at the hospital and spend perfectly good money to get pregnant? I would have helped you out for free!” Others would share their divorce stories to exclaim, “I wish I had my child on my own since my ex-wife doesn’t let me see my daughter.” And at a friend’s birthday party in a Montreal lesbian club, I was given the “evil eye” by a few women who didn’t seem to understand that I actually wanted to be a single parent. Overall, I found people immensely supportive of me despite the cultural baggage of sexism, homophobia, racism and classism rearing their heads from time to time.

During my pregnancy what concerned me most were the “practical” ends of having a child which I thought would be limited to the search for someone to help me with childcare and buying clothing and a car seat. I was no more prepared for the mountainous volumes of junk mail that concerned life insurance and installment plans for the future education of my children than I was for handling the sexist and classist presumptions about my child. For instance, I did not wish to know the sex of my child yet people would persist, “But don’t you want to know?” Obviously my not wanting to know was in itself the answer to their question, but these individuals desperately needed to understand why I didn’t wish to know my child’s sex, some asking “But aren’t you dying to know?” Invariably, I would retort: “Are you asking me if I am dying to know if my child has a vagina or a penis? I just want a healthy baby.” Yet there were those who continued to insist that I “had to know,” asking me what was my preference. Finally, I would cave and say, “Yes, I do have a preference: a hermaphrodite.” Just one conversation stopper and I was freed.

The sexism did not stop there. Then came the questions from both women and men alike about the child’s “need” to have a “male role model.” I would usually engage these questions head on with a deconstruction of sex asking, “What makes you think that if I were with a man that both of us wouldn’t be the female role models, or that I might not be the male role model? What is a bloody ‘role model’ anyway?” Or, when one Haitian gentleman asked me, “How will you raise a child without a male figure present?” I answered, “The same way I will raise my child without the presence of my pet giraffe.” He looked at me confused saying, “What does a pet giraffe have to do with having a child?” I responded, “Precisely as much as a “male figure” has to do with having a child.

There were many times when parents would attempt to warn me about the task I was about to engage in saying, “You will see–you will no longer sleep! Say goodbye now to life as you know it.” I always expected horror film music to start playing amidst these lectures (it never did) and I would usually answer such premonitions with , “I ordered the silent model.” The class situation was equally as unpredictable to me–I was truly puzzled by people’s need to project education and wealth onto my fetus. For those obsessed with my child going to the best schools and universities I would declare that my child would be an illiterate–albeit rich–plumber or electrician, joking of course. I wanted to protect my child from expectations of any sort since it would be for her/him to decide all matters of life. Some of my friends were perplexed as many of them were engrossed in the rat race typical to New York City parents where enrolling your child in preschool while the child was still in utero is considered a necessity. I was told, “You don’t think of this now, but trust me, you will regret not getting on the list now.” So “The List” became my reference for all the things I did not want to do.

My not wanting to conform to such notions of parenthood was not in resistance to being “different” from the rest, but my reaction had much more to do with my having taught for over two decades in higher education where I faced, on a regular basis, the products of parents who over-planned their children’s lives: university students with great doubts as to who they were, what they wanted to study, and tremendous fears of disappointing their parents. So my response to this paradigm was to tell those concerned that my unborn child go to the university one day that my child would be the king or queen (or both) of solar panels. My attempts to subvert were not always met with kind responses, but generally people in my life understood my desire to give my child the possibility of creating his/her own life with the freedom to resist the weights of my own or society’s expectations.

Finally, my beautiful child was born and I was beyond euphoric. I understood only then what parents meant when they would say, “You can’t understand being a parent until you do it.” When I saw my son for the first time in his incubator, I remember feeling overpowered by the magnanimity of this new life, as if I had stepped into Michelangelo’s fresco lining the Sistine Chapel‘s ceiling which reveals God’s and Adam’s fingers almost touching. As I approached the nursery, my son knew immediately who I was–it was as if he saw through me. And all I could think when I laid my eyes on him was not how beautiful he was, nor how he looked like myself. Instead, I immediately thought, “No nanny is taking care of my child!” I surprised myself by the speed with which I had become the cliché I had resisted all my life and I not only cancelled the nanny and back-up nanny’s services but I found myself bragging what a “genius” (I actually used that word) my son was when he latched onto my nipple on the first try. I was so worried about every detail of this new life that the nurses in the hospital laughed at me and inevitably so did I. From the moment my little tadpole was born there was nothing I would not do to protect him. Our days were spent feeding, sleeping, and diaper changing and then in the evening we would listen to music, entertain dinner guests and even dance to the music Om Kalthoum or Warda. Occasionally we would watch an episode of The L Word and I would forewarn my child, “This is why your mommy is single.” I would cuddle him as we watched the drama unfold on my computer screen with my editorializing certain scenes with, “She is crazy.” My son would just look around the room, at me and of course at my milk-filled breasts. He was seven weeks old and life was beautiful…dare I say, perfect.

That is, until one night when I woke up to find my child’s lifeless body next to mine.

I remember calling 911 and the drive to the hospital taking forever. I remember the doctor saying, “I am sorry but I could not save your little boy.” I remember a minister asking if I wanted to pray. I remember turning to her to say, “What for? There is no God.” I remember a nurse coming into the room where I was asking me if I wanted to to take a photo of my dead child, lying on the gurney. I refused. She asked if I wanted his footprint saying, “you will want a memory of him for the future.” I told her my memories where “here”, as I pointed to my heart. I remember wishing that my child had not been “the silent model” so that I might have heard him. I remember laying for six hours with my child’s body on a hospital bed before I was transferred to the psychiatric ward of another hospital. Sadly, in Canada many institutions conflate mourning with psychiatric illness. So I was sent off to spend the rest of the day watching people with various mental disorders hit walls and scream as I awaited a psychiatrist who would prescribe me 40 sleeping tablets. In Islam the mourning period is 40 days. I said to myself that I did not want to spend my life in grief so I gave myself these 40 days to take these sleeping pills, these forty days to mourn. I do not remember much else. I had amnesia and to this day I have holes in my memory associated with the weeks and months following my son’s death.

What proved most troubling to me in the aftermath of my child’s death was how so many people, to include some friends, could not cope with my child’s death in any way. Instantaneously people avoided me as if I had a communicable disease. Some people were there for me, but mostly my contacts with the outside world were institutional (ie. a SIDS specialist from the Montreal Children’s Hospital) and the many strangers whom I would meet in my daily life. It was through my isolation that I came to learn about so many other parents just like myself and I learned mine was not a unique story. The Italian fruit and vegetable saleswoman at the Marché Jean Talon gave me a medallion of Maria as she confessed having lost her child many years before. The tears welled up in her eyes as she told me her story. The salesclerk at the paint store in north Montreal similarly told me her story of having given birth to her daughter who had a congenital disease wherein every day of her daughter’s life had been spent awaiting her daughter’s inevitable death. The man from whom I bought olive oil told me of his sister who was still struggling with her son’s death. The Mexican immigrant who worked at Home Depot told me of his daughter’s birth defect and his family’s struggle to remain positive. On each occasion where people empathized with me it was often accompanied by their sharing their own personal stories of the loss of a child in their life. I had stumbled upon, sadly, a forbidden subject I never wished to experience–that of the dead child.

There is something intrinsically taboo about a death of a child. The innocence of the child’s life coupled with the loss of hope for the future and the finality of death create this unspeakable event that nobody wishes to discuss, especially in Western societies. In the months following my son’s death, the way I viewed the world changed vastly for me both because of the loss of my son and because of the way people treated the subject of his death. I remember having coffee two weeks after my son’s death with a friend who had brought her 10-month old daughter with her. She turned to me and said, “At least he wasn’t her age when he died” as if there were a better age for a child to die. I never heard from her again after this meeting. Another friend advised me to “get a dog” as a replacement for my son. Another friend was upset and found it “suspicious’ that I didn’t answer her email to explain my son’s death. I wrote her back asking her to “never contact me again.” The blood stopped in my throat as I imagined the inhumanity of this person. I remember someone telling me, “Everything happens for a reason… I know it hurts now but you will see.” I did not strangle that person, but my eyeballs did. And if I had a dollar for every time I heard about how my little child was now an angel, I would be an extremely wealthy mother of a dead angel. Like Nicole Kidman’s character in The Rabbit Hole, I would grow frustrated with people’s attempts to make me feel better by saying that God needed another angel. Kidman’s response to this God’s need for an angel was spot on: “Why didn’t he just make one? Another angel. He’s God after all–why didn’t he just make another angel?”

I could not relate to the religious metaphors, the afterlife beliefs, nor the pernicious desire to “see the bright side” of the situation. Many friends–especially those with children–avoided seeing me as if death were a contagion. I began to realize that the death of a child is a contagion, a kind of social malaise in our society. Most people in our culture are uncomfortable around death–especially that of a child. Because of others’ discomfort, my task in the following months was to deal with my loss on my own and to attempt to forgive those who were not strong enough to be supportive. I can say that this was a most awful task.

So just weeks after becoming a mother, I had to rewind my life and step back to a pre-child time demystifying anew all the cultural prejudices and projections that are married to our incapacity to deal with death. And so it went that all the classist, homophobic and sexist and predilections were revealed in the mourning process just as they had been in the prenatal period. The discourse of the natural was one of the most common references I heard and although this might not a seem to be an offensive discourse, the resonances of the “natural” were unavoidable even in this very de-homophobizing world. For instance, I heard on many occasions: “It’s not natural that your child dies before you.” Of course I knew what the interlocutor meant by this statement, but it was hard–if not impossible–for me to respond to it. Having experienced the death of dozens of friends from AIDS, I knew that neither life nor death was qualifiable. Yet, I cannot deny that the death of my son felt so much worse than even my own brother’s death as a result of AIDS years before. The discourse of the natural smacks of that which should be so, a form of biologistic entitlement, and it smelled of truisms which I found as comforting as they felt troubling. After all, why enter into discourses of the “natural”? Certainly we cannot forget that this is the history of homophobia and of sexism to include the resentment towards women’s liberation from certain canonical (sic “natural”) roles they must play in society. I was not about to enter into the discourse of the “natural” because what mattered was not the “unnatural” aspect of my son’s death, what mattered was the simple fact that he was dead. Full stop.

Others would tell me, “It must be so much harder on you than on your husband” to which I would ask my interlocutor a simple “Why?” The general response went something like this: “Well, your child came from your body…you carried him nine months.” I realized the patent absurdity and offensiveness of this statement because attachment is not biological–it is emotional. However, to allege that a child’s loss is harder because of the nine months of gestation unveils all the somatic and biologistic discourses that prefer the “natural” child to the adopted child and that evidence a society for which adopted children are the “backup plan” to the hetero-normative (sic preferred) reproductive model. Such statements which implicated my suffering as somehow “worse” touch upon a society which privileges a constructed love based on biology over emotional love. In the months after my child’s death I found myself having to explain to complete strangers that loss is personal, that it is individual, and that it certainly has very little to do with the nine months I carried this child in my uterus. For when I miss my child, I miss his smell, his stomach, his smile, the sounds he would make, and just about every living experience we shared. I miss my beautiful child and not any emotional projection of a child I had not yet met. What I mourn are the moments I will never have with my child to include the day he would have been crowned the king or queen or solar panels.

What I have realized in the months and years since the death of my child is that one does not ever “get over” the death of a child. We can just move through the pain and inhabit it in a way that becomes part of who we are in all the beauty and bitterness that life and death embody. To this day I still maintain a rather bizarre relationship to the amnesia I experienced in the time after my son’s death as the impact of those beautiful seven weeks took over my heart and mind. I realized I was in trouble when I found myself driving one day in Montreal and somehow ended up on Celine Dion Boulevard. I could not remember where I was going and I certainly did not recall how I got there. I just sat in my car and attempted to understand this strange geographic trajectory I had just made.

For months after my son’s death I would obsess over the following subjects:

cryogenics

time travel

why George W. Bush didn’t choke to death on the pretzel

the man who threw his child off the balcony somewhere in China

the Madeleine kidnapping

the couple who, after the death of their child, jumped off Beachy Head with the body of their son in a rucksack and his toys in another

what if I had just woken up five minutes earlier?

or ten?

what if?

why a terms like SIDS would be used to explain an unexplainable death?

why give it a name at all?

I looked for answers only to find there were none and I found myself isolated by our society’s refusal to embrace anything that would not sell fast cars and plasma televisions. Indeed, my sympathizing with world news events made complete sense given that the community I had before 2007 was greatly reduced in and by death. I felt more sympathy by world events and struggles of people who really were suffering than by platitudes to take up a hobby or dive into my work. Also my political work in the field of human rights helped me grow stronger and more realistic about both life and death issues. I met men and women who had lost all of their children and still continued living.

I tried to move on from this experience of having and losing my child only to realize that there is no “moving on”–there is only moving through. While I learned that there is no correct way to discuss or represent my son’s life or death, I was thankful for those friends and colleagues who would make the simple gesture of stating, “I don’t know what to say.” Their presence, their silence, their sitting with me in silence, meant more to me than comments which would attempt to dismiss death. Indeed, these conversations incur bumps and ironing out of misunderstandings as we are not given a handbook called 101 Things Not to Say When Someone You Know Loses a Child.

I had to learn how to react to certain comments and not cut off completely from people who had good intentions but little or no tact. For instance, one well-meaning friend turned to me after the death of my son and said, “Have you thought of adoption?” I looked at him and said, “If your boyfriend died today, would you want me to set you up with my hot, single friend tomorrow?” He immediately apologized and I realized that many of these comments I was told that deeply hurt me were mostly made out of the individual’s inability to cope on a very raw level with the fact of death. We do not like death, we do not wish to think about it and certainly we do not want to be reminded that we could lose that very precious promise of life, the child. Certainly I felt much in common with some of those men and women with whom I had worked years earlier at Gay Men’s Health Crisis in New York as I recalled their stories of friends and family disappearing once they were diagnosed with HIV.

When I was two weeks pregnant I lectured at the university in Freiburg, Switzerland. I had already begun to be exhausted in the late mornings from the surge in hormones. Just after checking in to my bed and breakfast, I laid down and turned on the television to watch Swiss television. The first channel had a program on congenital birth defects. I changed the channel. The next channel had a show about a child who suffered from a debilitating disease whose name I cannot remember. Even more quickly this time, I changed the channel. I thought to myself how I should not think about such “negative” conditions. Now I realize how in our culture we maintain superficial notions of “negativity” attaching it to something that is simply part of life–death. Back in Freiburg I did not want to think that such diseases could occur in my life, I did not want to embrace their reality. Ten months later however I was living a reality that was inescapable and that was there all the time, even had my son not died.

When you lose a child you remind people of what they stand to lose and there will never arrive a moment such as that which often occurs months after a break-up where you realize what you gained from such an awful situation thinking to yourself, “Well now I am so happy to be out of that unhealthy relationship! I have learned a lot about myself from that dreadful experience.” There is no way to represent that lost child as anything but the beautiful creature s/he was and there is no narration which will leave people feeling chipper and upbeat. There is no “lesson” to be learned. I have certainly tried and failed miserably on that count. Once I walked into a small shop and the owner and his friends were inside telling comparative tragedy stories as part of a competition. A woman who talked of her horrid childhood; a man who mentioned his ex-wife’s antics; another man who discussed his treatment and recovery from cancer and so the stories rolled out from one person to the next. After finding what I had been looking for I returned to the front of the shop and one of the group turned to me and said, “Do you have a sadder story?” I answered thinking I was being clever, “Absolutely…but if we were to take bets, I would win hands down.” The crowd became silent in their curiosity and one woman asked me to share my sad story. “My son died when he was seven weeks old,” I replied. I don’t know what I was thinking–I imagine a small part of me was hoping they would laugh because indeed I had won the contest. Instead, they all grew sad and said collectively, “I am so sorry.” And that is where death is the most painful: the silence after hearing “I am so sorry.” I wish there were a follow-up as in quality control surveys: “In order to serve you better, please give us your feed-back.” I certainly would have written this: Please kill sadistic world leaders and leave my child alone. Oh and make rose water and astroid ice cream. Thank you!

About a year after my son’s death I was in New York with an old friend, Noritoshi. I hadn’t seen Noritoshi since before my pregnancy and when I told him about my son he retorted quite matter-of-factly, “So he decided to leave.” Somehow those words helped me and I cannot completely understand why. Perhaps it was this ability to lend agency to my son wherein he made a choice to leave this world and life was not taken from him? Or maybe it was this notion that my son could possibly have had agency and I was unable to allow that thought into my head because Western societies do not allow infants such agency in relationship to their own lives and deaths? Or could it have simply been the fact that Noritoshi came up with this response as an answer and not the answer? I still do not know exactly why, but I feel comfortable with this idea that my child left and from his life I take inspiration for how I deal with his death. So, instead of mourning the 60 years I so desperately wanted to know my child, I am thankful for the beautiful seven weeks that I shared with him in which he was in perfect health and happiness. Likewise, as hard as it is to understand why people abandon the site of death and scamper from anything that detracts from the projected televised “perfection” of family and friends, I have learned to remain vocal about my son while remaining compassionate to those who chose to live in their carefully constructed death-negating closets… And I still hope to one day taste rose water and asteroid ice cream.

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Julian Vigo is a scholar, film-maker and human rights consultant. Her latest book is Earthquake in Haiti: The Pornography of Poverty and the Politics of Development (2015). She can be reached at: julian.vigo@gmail.com

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