“For I have eaten ashes like bread and mingled my drink with weeping.”

Joyce Carol Oates in The Tattooed Girl

For need can blossom into all the compensations it requires. To crave and to have are as like as a thing and its shadow. For when does a berry break upon the tongue as sweetly as when one longs to taste it, and when is the taste refracted into so many hues and savors of ripeness and earth, and when do our senses know anything so utterly as when we lack it? And here again is a foreshadowing—the world will be made whole. For to wish for a hand on one’s hair is all but to feel it. So whatever we may lose, very craving gives it back to us again. Though we dream and hardly know it, longing, like an angel, fosters us, smooths our hair, and brings us wild strawberries.

Marilynne Robinson in Housekeeping

If I can ever believe these words, so ethereal, so lyrical, describing both the object and its reflection in a way that adds dimension to a life flattened by despair, I will have reclaimed my son. For now, the moments, the hours, the months of longing have led only to more longing. A mirror within a mirror, cast back and back a thousand times always and only to the original image. A boy with tearful blue eyes.

Yesterday I went to see another movie. A silly boring animated film someone recommended as being “so much more than a cartoon.” I don’t know what that means. A cartoon is always a cartoon. Even with a tender message, a cartoon remains brittle. But I went and I remained seated though several rows were filled with children from summer camps, whispering and giggling. Little heads everywhere in the darkness. When the movie was over I walked the short distance to the drug store. I bought nail polish, more body cream I don’t need, a razor to shave my legs, some eyeshadow. Then I drove to the memorial that the Compassionate Friends Organization has dedicated to children who have died.

About a quarter mile down a bike/running path, past a bench bearing a small plaque from a mother to a son with whom she had shared the best nineteen years of her life, there to the right appearing almost apologetically in a patchy surround of scrawny oak trees,—four large stones to which bronze plaques had been affixed, filled with the names and dates of children who have died. Some who were born and died the same day. Others, in their teens and twenties. So many names. So many lives unlived. How had all these parents survived? All around the path separated by marshlands and a shallow inlet from the bay, are large homes. In the backyard of one were the sounds of children yelling from a pool. I could see the top of the water slide, a little boy perched aloft, then disappearing, squealing with pleasure.

I sat on a little bench in what shade there was. I talked to Maxx. I looked at the few seabirds flying above and I watched a few perched some distance away in the wetlands. It was hot. Maybe over 90. There, across the street from where I had parked my car, was the hospital where 10 years ago, after chemo, I had received 6 weeks of radiation for my treatment of breast cancer. Every day, five days a week, I drove from work to receive my allotted minutes of internal burning under a giant revolving, whirring machine with red laser beams criss-crossing my naked chest in a lead paneled, air-cooled room. Showing up for my prescribed treatment so that I could live to raise my children. If not for them, I would not have fought like a demon, willingly subtracting body parts one after another. If I had known then, a decade later, that I would be sitting on this bench in the oppressive summer air mourning my son, would I have chosen to die instead? Would I have chosen my own death rather than be with him as he died? What kind of life is this that a mother has to ask herself these questions?

Driven by thirst, I eyed a fine icicle outside the window, within hand’s reach. I opened the window and broke off the icicle but at once a large, heavy guard prowling outside brutally snatched it away from me. “Warum?” I asked him in my poor German. “Hier ist kein warum (there is no why here), he replied, pushing me inside with a shove.”

Primo Lev in Survival at Auschwitz

I picked up a small stone and set it upon a dead oakleaf on top of one of the memorial boulders. Then, hot and sweaty, I drove home. I will say this. I don’t want to be here. I just don’t. I cannot find any peace. My heart shatters again and again, moment after moment. I cannot stand this life.

Birthday

Yesterday was a day of assault. Everywhere, everything was mortar fire. I did not come away unscathed. I was trying to keep quiet, a low inner profile because tomorrow (today) is Maxx’s 23rd birthday. I will not say “would have been.” I will not talk of him in the past tense.

The new college semester is beginning on Monday. The new Freshmen are landing on campus to move into their dorms. Young men walking in T-shirts and basketball shorts are beginning to appear. Young men with close-cropped hair and long legs taking loping strides across green lawns. Big shoes and back packs. The look of innocence and insouciance mixed with a bit of wide-eyed hesitancy. It is breaking my heart. Summer breezes blow dead leaves from the trees and into small swirling circles along the gutters.

Just at the lunch hour one of the full time professors, a Ph.D., the Co-Chair of the Psychology Department and a practicing therapist for over 20 years came into the back office to say hello. She taught Megan, she’s known me for about 12 years and she knows about Maxx. She has two grown sons of her own, one is Maxx’s age and the other a bit younger. She took Megan to dinner once during the first year after Maxx’s death to talk with her about how she had lost her own teenage brother when she was 18. I thought, given who she is, or at the least proclaims herself to be, that she knew better.

She announced to everyone that they were putting their house on the market and moving to the town in which we live—a city I would do anything in my power to leave. She comes from wealth, as does her husband. She is a well traveled woman—one who takes summers in Greece, Italy, all of Europe. She had just returned from a month in Africa. She is always tan. One of those for whom working to earn a living is probably completely financially unnecessary, but who likes to pepper her pronouncements about herself and her well-lived life with facetious remarks about how retirement, now, is impossible. One of those who chooses to cloak herself with the “salt-of-the-earth” persona when it is convenient and politically correct. “I’m a highly educated, cosmopolitan, thoughtful, professional, moneyed women who owns and wears eclectic clothing and jewelry from all over the world, with a beautiful family leading a charmed life---but I’m still “real,” a person of the earth.”

I was standing up to leave with my purse on my shoulder, ready to go to the grocery store during lunch—to test the waters of the drink and frozen food isles again—to see how much further I could go, or if I could do it at all, to subject myself to the fire of self-immolation, to withstand the frostbite of a dead heart, to walk past items I would have purchased for him, to look at packaged Sushi, to step from my ghost wasteland into the throbbing sound of people shopping, looking to feed themselves, gloating on the freefall gluttony of consumerism and all that implies in a life untroubled by suicidal gloom. I was holding my keys in my hand. My keys. I had a short list in my purse. If all went “well” in the store, I was going across the street to pick up some items at the drug store. I am patient with myself and I don’t plan too far ahead. Always, when I leave to drive somewhere alone, I am waiting for the car accident that I secretly hope will annihilate me in a violent blast of crushed metal and bone.

I was turning my back when she made this self-satisfied announcement about needing to buy a new home where it’s warmer than the foggy coastal town she lives in now, with a pool so her boys would have a place to bring their families, a party-house.

My jaw clenched. My head started to buzz. I looked at her in disbelief. Her “boys” are Maxx’s age. Did she just forget I had a son who died? Did she think because it was something that happened “a couple of years ago” that the mention of her future happy family gatherings was anything I would be interested in, or ready to hear, let alone acknowledge with pleasure at her continued good fortune? I did not respond because there were two other people to whom she was also speaking. I did not know what to do. To walk away. To run away. To scream and run. Perhaps it would have been different if we had not had some kind of semi-relationship that implied an understanding between mothers of sons, had we not had conversations in the past about our boys, (before and after Maxx became ill) had she not on several occasions presented herself as a loving mom and a caring individual. Had she not been a mental health care professional schooled and practiced in the treatment of psychic pain.

I said goodbye and left. I was artificially, superficially pleasant.

I did go to the store where I watched obsessively as a mom and her 20 or so year old son shopped for family groceries. I lingered too long in one aisle after another in a state of shock, trying to select a brand of breakfast bars, crackers, walk quickly past the juice aisle, but wait, I wanted bottled iced tea. There were new drinks he would have liked. Power drinks. I talked quietly to myself and shook my head. I haven’t purchased or eaten fish since he died, but I picked up some frozen salmon burgers. I don’t eat salmon but I put the patties in my basket anyway. I bought fresh sourdough. I looked at magazines and remembered how we tried to find something for him to read on the way back to the hospital where he was taking a 4 day chemo treatment. We never had much luck, because everything he liked to read was about health and fitness…and he was dying. I bought some low fat Swiss cheese slices because I should not be eating full fat cheese, though whether I get fat, die of a stroke, or keel over with a heart attack doesn’t make any difference to me in the least. I bought vanilla yogurt. To others it appears that I am “shopping,” reading labels, making selections on some basis of preference or information. Nothing could be further from the truth. I don’t know what I’m doing or why. I might as well be stumbling through the always open door of Hades.

Returning to my car, I noticed the young man wheeling a full cart behind his mom. They were laughing. I got into the front seat gasping. There is an ancient rusted mechanism in the heart of a bereaved parent who finds herself stuck in the outside world—one, that if all goes as it should, would never be noticed, let alone used, that slowly, haltingly groans into the on position when the stunning immediacy of grief becomes too great to bear. It is as if all life around you grows dim, fogged through tears, though you may not actually be crying. Sight, though working minimally, is not connected to what is really there. Sound disappears, but a screaming in your brain that comes from your heart begins its piercing shriek. It is at once distant and deafening. A physical bursting within your mind that breaks over you with the force of a cyclone.

WHY IS HE DEAD???? WHERE IS MY BOY??? PLEASE, PLEASE, I WANT MY BOY!!

This is how I drove the short distance back to work. I did not stop at the drug store. The drug store where they play that horrible canned music from the 70’s and 80’s popular when I was in my teens, 20’s and 30’s and life was still ahead. “I love you more today than yesterday, but not as much as tomorrow.” “I can’t live if living is without you. I can’t live, I can’t live anymore.” “Baby, baby don’t get hooked on me, I’ll just use you then I’ll set you free, baby, baby don’t get hooked on me.

Where did our lives go? What happened? Who are these people who live? With their party-houses and plans for a future? You are dead. So am I.

Today is your birthday. We donated money to St. Jude’s hospital and sponsored 9 DogTown dogs in your name. We love you and miss you sweet Maxx. Always, always, always. Always and forever.

Sundays are the worst. Sundays I disintegrate into utter internal chaos. My mind flings itself, a ramrod against the doors I’ve worked so hard to keep closed all week, opening one after the other onto adjoining charred cells each rank with the sour smell of fear. This one reeks of doubt—did I do enough, did I say enough, did I fight long enough, did I make the right choices at the right time—this one spews the acid of panic into my face—how can I live the rest of my life and never see him again? Never hear his voice, touch his face, run my fingertips through his hair?—Here, this one, filled with the smothering smoke of disbelief—is my child really dead? How could he have been here so full of life, then gone? Is he still gone? He is not coming back? This one, heated beyond bearing with the rage of an unquenched fury, the fire fueled by my vitriolic wish to destroy all that continues, myself included, because he cannot live. Here is where I spend a great deal of time, sweating drops of blood, coiled in a corner, a dying snake, before I can, slither myself forward into the last cell, the one with the mirror propped against the wall showing me who I have become. A silver shining that reflects the destruction that make-up, a new haircut, or pretty earrings cannot disguise. Witness to the fact that I have forgotten to eat, forgotten to close the refrigerator door, or put the dishes away, forgotten to remember that I am still alive physiologically and require a minimum of attention just to remain so. Though why I can’t say.

I turn from a book, to something onine. From something online to the television. And all the while I am losing Maxx. Again, as if those days were happening now. Again and again I see his illness begin its slow strangulation. I hear his voice and am with him again in the hospital rooms, oncology, the ER, coaxing him to eat. Shaving his sweet head. Lying next to his body heated with low degree chronic fever, rushing for Kleenex to staunch his constant nosebleeds. Trying to memorize the marks and small blemishes on his back because I know in my heart he will die. Trying to sniff the skin behind his ears and stifle my screams. These are my Sundays.

This is what I do. I sleep until noon. I wake up and have coffee but no food. I look at my email from Chadwicks, and Victoria’s Secret, the Body Shop and Amazon. Steve and I will talk about what we will do, but in my head the clanging and banging of the ramrod bashing against the doors has begun and I know I will go nowhere, do nothing. I will read for a bit if I can. But soon, sooner all the time I will start the downward slide. I will begin to stare into a corner. Sometimes I get cold. Then I get restless. I will move back and forth from the living room to the kitchen. Finally, I will stand at the sink, arms spread holding the counter where I start to cry. This is where it usually begins for me standing at the counter or the stove. It is there in that kitchen, that formerly hallowed room where I cooked and fed and nurtured my tiny family, that my resolve, my shallow hope for something, anything, dissolves. Then I start to wander back and forth crying and talking, shaking my head. I will grab a sponge and a bottle of spray bleach and begin to spray and wipe. Crying and spraying. I don’t know what or why I am doing anything. I have come undone.

Sunday, used to be the day before the work and school week began filled with chores and homework and preparation. Now, there are no preparations. I don’t care what comes on Monday. Or Tuesday. These are simply days that pass until the next round begins. Sometimes I can wait until 3 or 4 before I take a pill and have a beer. Today it was a bit earlier. I went to sleep again about four hours after I had awakened. Then I get up to have something to eat, wait a few more hours, take another sleep med and go back to bed for the night.

I wonder what people think we do as we’re “healing,” (a favorite outlier word to describe a process that occurs in a Disney movie when after being orphaned in a forest fire, or watching both parents die in a stampede, the lonely little cub makes new friends each of whom in his loving and quirky way cares for him until he can be whole and strong again.) “Did you have a nice weekend.”? Sometimes I say, “ Fine.” Sometimes, I say “Not so great.” What I want to say, no, scream, into their dull-eyed faces, is “Don’t ask me about my weekends ever again.” Asking me about my weekend is like asking a prisoner if the wrack this Sunday was as painful as last, or the hot pokers which burned your skin were just as delightfully sharp and sizzling as they were when you last experienced them. Keep it simple. Don’t ask. Whatever we did or did not do is something we don’t wish to share with anyone in any case.

Here's to another Sunday. I'll try do some Yoga tomorrow.

Today is Megan’s birthday. She will be 28. It will be her second birthday since Maxx died. When I was 26 I had been married for a year. When she turned 26, her baby brother had been sick with cancer for 2 months. Tonight we will have dinner and hug her, give her a few gifts, try to be together in some form for three or four hours as a family—shattered as we are—without Maxx. The idea of marking anything except the time passed in months, and eventually years, since his absence feels absurd. And for the most part we don’t even try. In fact, we do the opposite. We hide, we ignore, we live through until the next day.

But Megan’s birthday we will not wave aside, nor would we if we could. She is my firstborn. My only daughter. And I remember her baby days, her childhood with great love. Megan taught me how to be a mother. She awakened within me all the love I was meant to express. She turned my life from “me” into a state of “another,” a dynamic, electrified giving response mode—switched on and never turned off--that has determined the course and shape of my life all these many years since she was forcibly pulled from my body. I think she must have known, even then, that this was probably not a space she wanted to enter. This world.

But despite her fierce desire to stay put both within me and, failing that, in a universe where only immutable goodness and justice exists, and my inability to sustain that universe for her, loving Megan taught me how to love Maxx. She is the reason I live now. And it is her birthday.

My beautiful, smooth skinned, peach complected, intelligent, funny girl with the shining hair, hazel eyes, and delicate features. My lovely daughter whose heart is lonely and aching for her brother’s smile, wit, his gruff, but genuine expressions of care.

Her poor broken-hearted birthday.

Everyday when I leave work I have to make the decision about how I'm going to spend the next few hours before I can go to sleep. I know that I will have either a beer or a glass or two of wine when I get home. (Although I usually, eat something, food is optional). The more important decision is whether to take 1/2 an Ativan before I leave work, or try to postpone it until closer to bedtime, in which case it may help me sleep more soundly combined with the Ambien.

Truthfully, there hasn't been one day since Maxx was diagnosed that I have not taken some form of medication either to quell my anxiety, panic, horror, desperation, hopelessness, or to help me sleep for a few hours. During the first year, I took a wider variety. Now, although it remains a given that I take something at some point during my waking hours, I have worked out a dosing schedule that does not in any way impede my ability to function. In fact, like those who are prescribed Methadone, without some form of medical "de-enhancement," I am not able to maintain any kind of balance at all. So, based on careful calculations and an internal check of how close to the edge I am at any particular point in the day, I consider all upcoming options and any evening requirements, and choose the time when I know the effects will be most beneficial.

This evening instead of taking the Ativan, I mistakenly took 1/2 a Valium. I realized as soon as the bitter pill dissolved on my tongue, what it was. I didn't really care because 1/2 of anything is always better than nothing and the results vary little. Ativan calms me a bit, but does not make me sleepy. Valium, on the other hand does. So after dinner, I became drowsy and went to lie down. It occured to me as I dozed that the house was quiet for perhaps 30 minutes. The dogs had stopped barking, my husband was on the computer and the TV was off. There were no slamming car doors, or voices from the neighboring house. For just this short time, because of the quiet inside and out, my stomach stopped hurting. My stomach has bothered me for two years. It is rare that I am not constantly plagued by a sense of gripping tension in my gut. I am not always conscious of it, but when I feel it relaxing, is when I know that it is always constricted with stress.

I lay in the darkened bedroom for perhaps 45 minutes. I thought about the years when a nap after work was a simple pleasure. I could rest for an hour without a sick stomach, or startling at every sound, gasping when a cupboard slammed in the next room. I used to fall asleep with the sound of Maxx's basketball banging against the garage door outside my bedroom window. In those days the slam of his ball, the shake of the wall each time it hit the wooden door and bounced back onto the slanted, cracked driveway became a soothing lullaby of white noise. He was home where he belonged shooting hoops, doing something he loved. I cradled the rhythmic repitition of sound in my head as I drifted and slept. Maxx...slam, thud...Maxx...slam, thud...Maxx was home. I could rest. I could dream. He was safe, so was I.

Never shall I forget that night, the first night in the camp, which has turned my life into one long night, seven times cursed and seven times sealed. Never shall I forget that smoke. Never shall I forget the little faces of the children, whose bodies I saw turned into wreaths of smoke beneath a silent blue sky.

Never shall I forget those flames which consumed my faith forever.

Never shall I forget that nocturnal silence which deprived me, for all eternity, of the desire to live. Never shall I forget those moments which murdered my God and my soul and turned my dreams to dust. Never shall I forget those things, even if I am condemned to live as long as God himself.

Never.

Elie Weisel

I thought to write about the movie we saw this weekend, Defiance, a true story of the four Jewish Bielski brothers who escaped German death squads and established a community for other Jews in the Belarusian forest during the Russian collaboration with the Nazis in 1941. The film is powerful and I could not help but be overwhelmed by how the metaphors of survival and courage expressed through the individual characters were so similar to our lives now—to Maxx’s then. I am still thinking about the tremendous courage those people displayed. In the face of such madness, such evil, grew a community at first tenuous, then vibrant and committed to that which is most precious in the human soul—an affirmation of life.

I am thinking about how Maxx had come to this awareness, at least for awhile— before he knew he would not live. It is hard to think about what he knew or thought after he realized he was going to die. We could not talk about this. He chose not to and while enduring this was more painful than I would ever have dreamed, I respected his need for privacy. He was dying and how he chose to leave this earth was entirely his decision, not mine, to make. So I can only imagine and this imagining is fraught with pain and anxiety, confusion and ambiguity. I have not yet, nor perhaps will I ever, come up with that story, the one you tell yourself, and try desperately to believe for just a few moments of silence.

But, I am distracted from my original intent. Leaving work today I was called into my boss’s office. He wanted to “ask” me to take on an additional task, one that would require more responsibility than I am either ready or able to manage. Recently, I asked to be allowed to work 4 days a week instead of 5. I had expressed a need for a reduction in responsibilities and a change in my workload in order to avoid having to take a stress leave of absence. I was granted both requests.

Today, I refused to take on this additional task and explained again that I am not the same person I was before Maxx died. I stated that this was the place where I came to work to perform a certain set of duties that comprised my job—those which had been specifically decided upon when I reduced my work week. Then I went home and resumed my life in hell. I try not to bring my personal destruction into work with me, but I am still devolving emotionally and I am not “OK.” He replied that I seemed to be fine and not “too spacey,” able to perform my job without any apparent difficulty. I told him it took every last bit of resolve I had to last the day before I could get home and to bed. He went on, I went on. I realized half way through this insane discussion that he wasn’t hearing me. He began to tell me about the challenges he faced raising two small children. I answered, “Yes, I raised two children as well. People do that all the time. It’s difficult to be sure and certainly a challenge, but it’s done. It is not the same as watching your child receive torturous chemotherapy, suffer, and die while you stand by helplessly unable to do anything. It’s not the same. And I’m not the same. I’m sorry, but I can’t do what you ask.”

Listening to his rationale for why he was making this request, it was as if the discussion we had 6 weeks ago about my stress level and health had never occurred. And this fact became the focal point in my mind for the continuing absurdity of the conversation that followed. For everyone around me, with few exceptions, it is as if I had never had a son who had died a brutal death from a vicious disease. The unspoken, implicit message is that it’s “time” now to move on. Given that it’s over a year, at the very least I appear to be quite deliberately dragging my feet. “Some people choose to be miserable,” one co-worker once told me several months ago.

The discussion was hopeless and I could see that, though I continued to try to make myself understood. Eventually, I gave up. He accepted my response. But he did not accept my reason. That my son has been dead for 20 months made no difference to him. Those who knew me before Maxx became ill, believe that because I show up every day, I am as I have always been. Though no one would ever willingly admit it, they are all sick of my “excuse” for what they see as my withdrawn demeanor, my hesitancy to speak, my unwillingness to engage on any level.

I am not ready. I may never be ready. That is my choice—the only privilege I have left. To be left alone to be whoever it is I am, or will become. I owe no one, other than my husband and daughter, anything. I am not here on this earth anymore to please others or to acquiesce. If I choose to dwell, now and then, among the living (or I never do again) that is ultimately my choice. If this means, in the end, that my futile attempt to be honest (speaking without rancor) to my superior results in losing my job, then so be it.

At some point during this pointless exchange, my boss began with the sentence that so many bereaved parents have heard. “I can’t imagine what…. .” I stopped him and said, “No you can’t. No one can unless that person has watched his own child die. It’s unimaginable. It’s unthinkable and nothing that anyone should ever have to witness.”

I tried to make myself understood, but I think I only had one thing confirmed. Most people, though they may hear, do not listen. They do not think, or feel with their hearts. Compassion is not the equivalent of convenience.

If there are a few things that I would wish “outliers” to know about "us," it is these:

Understand that we are not who we were. We will never be who we were. Stop pushing. Give up waiting, glancing at your watch, tapping your toe, congratulating yourselves for being so patient and kind. We know what you are thinking and it is a terrible pressure you are exerting upon us, injured and disabled as we are. We cannot join you now. It will be a long, long time before we are even ready to wave across the canyon that looms between us. Let us determine our path according to our own timetable. Do not forget to respect our differences. For we can never forget that once, not so long ago, our babies lived, grew beautiful and strong, were filled with laughter, potential, joy, spirit, courage, commitment, morals, beliefs, hopes, dreams, promises. You may “forget” to remember that our child was at one time, our life’s blood, that he was ALIVE. But we do not forget. Not for one single solitary second of any day does the awareness of who and what we have lost ever leave our minds or our hearts.

Please do not make assumptions about me to ease your own conscience.

20 Months

Hold quiet the bearing
of this grief.
Be still in your mind.

Be not the shell-shocked soldier
gazing hard at an indifferent sky
nerves zinging with the clash of
two realities
seeing his eyes wide and glazed
with fear and disbelief.
That was my face too, the inside one
grief-spattered for what remained
of our lives together
his soon to be a memory.
Explosions surrounding the shallow ditch
where the two of us huddled
folded over around the soft bits as if
we could protect ourselves
from the unbearable piercing to come.
No longer able to hear (though I did)
following with bleary sight
the slow leak of my blood
mixing with his
the leak of our lives together
into the frozen ground.

Hold quiet the bearing
Of this grief.

No one would know
the rip of my heart
nor suspect
the imposter conductor who
directs the sluggish workings of a
Frankenstein woman.
They are willing to accept my
fallen limbs
refuse to notice the
netted black autopsy stitches
appearing indelicately above my collar
threaded in a jagged Y to my throat.
Primitive butchery
age-old patching of flesh
to stem the gush of a mother’s sorrow.

Hold quiet the bearing
Of this grief.

And they will
let me live among them,
if I wear lipstick
or occasionally a scarf.

Though it would be easier to die.

On August 6th it was 20 months since Maxx died. I don't want to begin this blog with the history of what happened. I don't know how I want to begin. I don't even like the idea of blogging, telling anyone who happens to find this, how I feel...about anything. It feels wrong. I am a very private, solitary person. I am of another generation, born in 1952. The public sharing of self that has come to define the culture in the past 20 years is not an activity, a persona, with which I am comfortable. I have written about the death of my son in a journal of sorts. Not often, or regularly, but I have put my pain into words.

And though this public forum feels and seems alien to me, I admit that I have searched endlessly in my grief for similar stories of the deaths of young adults from cancer. I have found many, but Maxx's case was so unusual, induced by the immunosuppresive drugs he was taking to keep his Ulcerative Colitis in remission, that there are no other stories anywhere that seem to touch all these unimaginable, unbelievable slipping down circumstances that piled, one upon the other, as we all tumbled headlong into his grave. He was strong, his chronic IBD was under control, he was set to begin his senior year in college. Otherwise healthy, athletic, intelligent, funny, kind, he was diagnosed as a result of feeling unwell for about a month, on July 13th, 2007. He died 5 months later on December 6th of Hepatosplenic T-Cell Lymphoma, Stage IV at the age of 21. Seventeen weeks of horrific decline after 20 beautiful years filled with the joy of his presence, hope and excitement about his future. Gone. Extinguished. Perhaps 30 other people in the entire United States have died of this disease as a direct result of the same recombinant medical protocol with which Maxx was treated.

There is no one who has lost a child to cancer who does not suffer the agonies of the damned. It does not end. It changes a bit here and there, the context in which the destruction of a life (his and ours) manifests, evolves. But it is forever. Perhaps I have something to share, perhaps I don't. This month, our old family birthday month (myself, my daugher and Maxx) feels so brutally empty. Last year, though we felt stricken, remains a haze. This second year brings with it deeper nuances in the landscape of finality. I wanted to mark it, somehow. This was how I chose to do so.