Tag Archives: grieving a child

this is halloween

Today is Halloween. It’s Halloween, and I have a three-year-old to dress up, a three-year-old with whom to share the wonders and strangeness of this day. It feels like a miracle.

2012-10-31-12-54-59.jpgSix years ago today, I also had a three-year-old with whom to celebrate Halloween. Caemon was dressing up as his favorite superhero: a nurse. He had scrubs the same shade of blue as his nurses, a pretty amazing counterfeit UCSF ID, a surgical mask, and a bald head to match all the nurses who cared for him.

But his mask, while conveniently thematic, was not necessarily part of the costume, and his bald head resulted from the chemo that dripped into his body to try to cure the most terrifying monster of all ravaging his little body. Still, my boy was ready for Halloween, and the fact that we were home for a rare few days from the hospital meant he got to enjoy the thrill of walking out into the world wearing the disguise of someone who was, in his eyes, invincible. Wearing his costume to have blood drawn meant wearing a surgical mask, which he needed to protect him from all the viruses fall has to offer, wasn’t so strange out in public. It also meant that the providers in the clinic we went to gave him more candy. But most importantly, it meant he felt like he was one of them and that he had some control over circumstances that so rarely seemed to be in his control.

I remember it rained that day, that we would get a call from our Nurse Practitioner at IMG_8183UCSF telling us we would need to come back that night, telling us to take him trick-or-treating first, telling us they would make it special for him when he arrived. I remember walking him in the rain to four houses in our neighborhood, the rain on my face hiding the tears that were flowing freely. As the neighbors handed him very special treats, I remember wanting so much just to have a normal Halloween for my boy, a normal childhood, a normal anything.

I remember driving that night over the Golden Gate Bridge, the rain and the lights of the city twinkling so magically and how sharply that contrasted the thick blanket of disappointment in the car as we returned to the hospital early with a very sick boy. I remember going through admitting at the hospital with my little nurse in tow, and as we walked the hall to the elevators to go up to the pediatric oncology floor, a nurse in the ER swooned when she spotted him and asked if he was ready to get to work that night. “Of course!” was his reply, as he began so earnestly to follow her. I remember arriving on his floor to find his room prepped by a favorite nurse with treats in the form of exciting medical supplies to find. And I also remember an hour-long attempt at getting him an IV from a beloved nurse in an Alice costume because in the morning he’d be getting his Broviac surgery—a central line—and he needed to be topped up on platelets.

I remember that Halloween more than any other. Trauma has a way of tattooing memories onto our minds, and while I have soft-filtered images of his first three Halloweens, that last one may as well have happened yesterday.

And it was his last. Caemon had four Halloweens. He was a polar bear, a skeleton, a kitty, and a nurse. That’s it. He carved pumpkins once. He trick-or-treated twice. He loved every bit of it, even as a sick little boy.

But here I am six years later. I am sitting in my car, dressed as a black cat, complete with drawn-on whiskers, because my three-year-old is at school, and I am to help with her Halloween parade. She is also a kitty, all in pink. She chose my costume so that I would be like her. The idea for her costume came from her love of the cat in the book Room on the Broom—a book of her brother’s, a gift from one of his beloved nurses. Even though he is not here, her big brother influences her. Our stories of him, the photos of him all inform her existence and my parenting. I treasure that, but sometimes I have to pause. Is my pain and grief somehow tainting how she celebrates these days? Am I wrong to let her images of her big brother color choices she makes?

As much as I have feared her living a life in Caemon’s shadow, I need not worry. This child shines in her own brilliant way, and she reminds me when I find myself lost in my grief this time of year that I have to keep celebrating. Though I was reluctant to do so, just as I have been every year since he died, she encouraged me to pull out the Halloween decorations. She reminded me that, yes, this is what we do. We display the big spiders and the cauldrons and candles and the purple lights. We visit the pumpkin patch and drink too-sweet freshly-pressed apple cider. We decorate pumpkins, first in stickers and paint, then with whichever design we opt to carve into them, and always at the last minute. We put on as many costumes as we can for the entire month of October. We eat the treats. We go to the parties. We celebrate.

And because of her brother, she gets to eat some candy despite my reluctance to give my kids sugar. Because of her brother, I go to her school and volunteer in costume even though I should be working. And because of her brother, I face this day with reverence, with poignancy, with an ache in my heart. But because of my daughter, I can finally see this holiday with joy again.

And isn’t that perfect? Halloween is a time when we celebrate the dark, when we look at the underworld and peek behind the veil to see what we don’t normally want to acknowledge. We see fear and horror and even death on parade. And to that we add the light–of sparkles and jack-o-lanterns, and, yes, little pink kitty cats. I can think of no better day to honor my two children, to see the intersection of the lost and the living, to embrace everything they are to me, to one another. And for the first time in so many years, I am grateful as can be to celebrate this day.

 

 

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opening day

Grief season began today. Every year as I spy August around the corner, and people start talking about kids going back to school, I start to feel incredibly uneasy. And before I know it, there it is on the calendar: August 20th, the day the crack in the ice opened up, the day the oxygen left the atmosphere, the day I learned the monster under the bed was real.

The months between August 20th and February 5th are filled with daily reminders of Caemon’s treatment. I obviously think of him in the “off” months. I grieve him openly and heartily. But August through February are peppered with memories of some of the most terrifying moments of my life, all culminating in the nightmare of losing my son.

Today, it has been six years since I rode for the first time in the back of the ambulance, my son strapped into his car seat, strapped to a gurney. Six years on, it is hard to know what to do with a day like today. I am careful these days not to relive too much of the trauma. I don’t need to sit in the moments when I was shaking so hard I couldn’t sign my name or shivering in the sweltering August heat because I was in shock. I don’t have to feel the trauma of holding him down for his first IV or the world going dark when I first heard the word leukemia. I know that I don’t have to relive the worst days of my life to see that they are there, but as this year’s grief season begins, I’m a fool to think I can avoid them entirely.

I know so many families now, so many families who have lost children to cancer, families who endured years of treatment, families for whom the entire year is filled with traumatic date after traumatic date. In this way I am lucky if there is luck to be found in losing my son. My dates are condensed, cooked down into the most concentrated and potent five and a half months imaginable. Much like Caemon’s disease. Much like Caemon’s life.

Grief season is upon me. My birthday comes soon. Then four short days after, Caemon’s birthday. There’s the day he first went back to the hospital, then Halloween, when we had to return early again. The last trip home in early December, then Winter Solstice and and bone marrow transplant and Christmas. And there is relapse, and there is his death day, and then it’s done. Grief season is over, just like that, and before I know it, I have memories free of hospitals. I have hikes in the redwoods and trips to the beach with my boy, whimsical weekends in hotel rooms, or days at home, walking to the park to swing. I ache for my son just as much during these days, but the off season is lighter, less shrouded. I can breathe.

But grief season is here with its dark, heavy cloak, and tonight, as I sat with the heaviness of that familiar garb, I lit a candle in front of Caemon’s photo.  I touched his face. I spoke with him. I wished so hard that I knew what he would be like now. I apologized to him that I couldn’t save him, and then I walked away for a moment. I wandered my house looking for something to hold, feeling my arms were empty. I scanned the room looking for something of him to hold. I walked into my room, earnestly searching, for what, I did not know. But my son was not to be found. His ashes rest in his box on the mantle, but this box, the crocodiles, even his favorite teddy bear, none of it were what my arms craved. I panicked for a moment. What could I hold? Finally, I stopped. I stood again, staring at his photo, held my arms out as if to welcome his embrace, pulled them back to my chest, empty, and wept.

J15bw

Image courtesy of In Her Image Photography

secrets

Below is a post written by Jodi.

I get credited with a number of positive traits like strong, capable, generous, and even inspirational. What if I told you that those are lies and you shouldn’t believe them? What if I told you that I am not at all strong, in fact that I am permanently broken and only a fraction of the person I was four years ago. What if I told you that I am sometimes incapable of even the most mundane tasks? And that what you see is what you want to see projected back. We all want to read the story of the hero who overcomes insurmountable odds, inspiring us to overcome our own sorrows and regrets, and I wanted to be that hero. For Caemon, for you, for my daughter, I have wanted to live up to that image. Fake it until you make it, I was told. I showed up to the events, stood on stages and told my son’s story again and again.

Right here on the pages of this blog I lied, or omitted the truth, and sought to project an image of strength and courage. In fact, I was losing nearly every friend I ever had for reasons I couldn’t understand; my marriage was crumbling; my hope dwindling. I drank until I could no more, and I didn’t tell you when I stopped. You might have congratulated me, but I didn’t want the attention on me.

I didn’t want to damage his legacy, my sweet Caemon. Losing almost everything wasn’t part of the story I was trying to write, but it is the truth. In all things, I wish to be truthful. Caemon was the strong one, the generous spirit, the inspirational figure, and I am just trying to be worthy of telling his story.

four augusts

It’s hard to go much of anywhere on social media this month without seeing parents rejoicing at the end of summer and the start of a new school year–that time of year when parents get more freedom and kids are the responsibility of some other adult for at least a few hours a day. Advertisements on television, mom blogs, displays in stores all point to the same euphoric feeling of relief that parents have this time of year, counting down the days until school starts. The culminating event of all this build-up is the iconic first-day of school photo, kids all decked out in their new-school-year finery captioned by their parents’ lament: “I wish she would just stop growing.” August on social media is a minefield for the bereaved parent.

All that festive back-to-school clamor hurts for fairly obvious reasons, but for me personally, it also heralds the beginning of the darker months, the time when, four years ago, all of the outside world became a jumble of voices and lights, and I focused everything I had on saving my son, only to find that these were the last months I would share with him.

My wife’s birthday was a week ago. It was a lovely day of celebrating, but that day too is marred by the beginning of the end. Four years ago on her birthday, we had our last family photos taken–the iconic photos that have become Caemon the Legend, Caemon the Hero, Caemon, the Beautiful Boy Who Had Cancer, Caemon the Poster Child for JMML. Exactly one week following that day, August 21st, was D-Day: the anniversary of our initiation into the cancer club.

In fact, four years ago at this very moment,  Jodi and I were sitting in the hallway of the children’s oncology unit at UCSF, talking to a hematology fellow who would confirm that our son had some form of leukemia. I remember shaking so hard I could hardly sign the consent forms for the studies he was entering. It was just the beginning.

August is the keeper of so many beginnings. It holds Caemon’s first day of preschool, his first camping trip in the redwoods, but after August 21st, it held his first stay in the PICU, his first chemo, his first oncologist. After February, this is the month I dread the most. One might think, four years on now, that I should be getting over the diagnosis, that I should learn to move on, that I should place all my focus on my healthy baby girl and teaching and new hopes and dreams and somehow forget. But how can I when it’s August?

It’s August, and before I know it it will be September and his birthday, October and November and the memories of the hospital, December and his bone marrow transplant, January and his relapse, and February, the end–the end of my beautiful Caemon.

It’s August, and I don’t have my boy who should be going to school, and I am not rejoicing. It’s August, and my son did stop growing. August is just too heavy to forget.

The coming months are the hard ones for me. They bring with them so many difficult memories, and while my daughter and my imaginings of her future do certainly provide a counterweight–even respite–to some of that pain, this time of year will forever be changed for me. There will never be a back-to-school season when I don’t wonder what a seven-year-old or thirteen-year-old or college freshman Caemon might have been like. There will never be a Halloween when I don’t think of his return to the hospital in his nurse costume or a Winter Solstice when I don’t think of his transplant.

And so, with August 21st, I enter the season of missing my son more poignantly. Another year has passed since the beginning of his end, four years of Augusts without him.

 

three years, five months

Three years, five months. Three years, five months. Three years, five months. 

This has been the refrain playing in my mind since July began. Three years and five months ago, my son took his last breaths.  He has now been gone as long as he was alive: Three years and five months.

I remember talking with another mom just three months after Caemon died. Her daughter had been gone for fifteen years, and she spoke mournfully of the day she was gone longer than she was alive. I remember thinking in that moment that this was a day I would dread. It was something that would loom long in the future. Would I even manage to survive three years and five months without my son? And then longer? Years later, here I am, still living, still breathing, still remembering.

And although this day has been looming in my mind’s calendar for years now, I have had trouble with what to make of it. I can hardly grasp that this time that has gone so quickly without him was the same time he spent on this earth. It feels unreal, but then, so does his short life sometimes.

The first three years of Caemon’s life were the best of mine. He made me a mom, something I had longed for for years, showing me the expansive love that comes along with that role. And Caemon himself, oh how he lived! In the time leading up to Caemon’s diagnosis, our little family was thriving as a triad. With his illness and then death, it was like the worst of eruptions, leaving nothing but a smoldering crater where my joy, my hope, my family, my son had been.

Two years ago, Jodi and I took a trip to Crater Lake–a lake formed in the caldera of a volcano. What was once a mountain is now a crater filled with the most pristine cobalt waters. Trees and wildflowers grow around the rim of this catastrophe-turned-wonder. But Crater Lake, as beautiful as it is, was forever transformed by the eruption that created this hole.  It will never be filled with the same material. It will never again be a mountain top.

This I am learning to be true of myself. In three years and five months without my son, I have not become the person I was before. Three years and five months have not reset me. I am a mother again, but I am not the mother I was with Caemon. That smoldering crater leukemia left is filling with beautiful things, yes, but never again by my boy. And we may be a lovely family of three, but we will never be the family we were, the family we were meant to be.

This week marks three years and five months since Caemon left my arms, three years and five months since I said my final goodbyes, since I drove with my wife back to our home without our healing son in the backseat of the car, three years and five months since the worst day of my life. Such a span is far too long to live without him. That I have to keep going, that he will forever grow increasingly further from my memory’s grasp is a new sort of heartbreak.

Three years and five months were all the days that Caemon lived, and in that time, he taught me to be a mom, showed me love like I had never known, fostered in me courage and strength. For three years and five months, he brought me joy bottled up in a blonde-haired cherub and the sort of laughter and wonder and light that no earthly body could possibly contain. 

Three years and five months was not nearly enough, not for me, but for Caemon, that painfully short lifetime was all he needed–to change me, to change his world.

mary lincoln and me

From Jodi:

mary_todd_lincoln

Mary Todd Lincoln

In her youth, Mary Lincoln was considered intelligent, witty, and gregarious. Unfortunately, life would rob her of her happiness, and she became known for her obsessive behaviors such as overeating and extravagant spending, violent outbursts, paranoia, long periods of depression, and multiple suicide attempts. For women of her era, this was more than enough to get her locked up in an asylum. Driven partly by concern for his mother’s well-being (Robert Lincoln was a politically ambitious man, and his mother’s behavior was a liability), her only surviving son committed her to a madhouse. Fortunately for Mary, she had connections and was willing to make a stink. She was ultimately released into her sister’s custody to avoid national embarrassment.

As if Mary Todd Lincoln hadn’t been through enough—two of her four sons died in childhood before her husband’s assassination, and another son died at age 18—she spent much of her post-White House years defending her sanity, even as she was valiantly trying to hold on to it.

Institutionalized for "exhaustion."

Institutionalized for “exhaustion.”

Mary Lincoln wasn’t the only woman diagnosed insane due to grief; history reveals that the cries of bereaved women echoed throughout Victorian era asylums. Women were routinely locked away by men for behaviors deemed unsuitable to their gender: using foul language, moodiness associated with PMS, menopause, or postpartum depression, being too interested in sex, and even for disagreeing with a husband’s religious beliefs. “One symptom was depression after the death of a loved one. For women, if the depres­sion continued to last longer than the woman’s family deemed an acceptable period of grieving, the depression became grounds for admittance to the asylum” (full article).

Surely had I lived during this time, I would have been committed to an insane asylum by now:

  • Violent outbursts/foul language
  • Prolonged periods of depression
  • Overeating / under-eating
  • Exhaustion
  • Addiction

Fortunately, I do not live in a world where women are locked away against their will for these afflictions. Still, my grief over the loss of my son has had a fallout effect not unlike what Mary Lincoln experienced.

We are far from our best selves when we experience loss and grief. Our culture does not address death in any meaningful way. We glorify it in the media, but when it comes to the real deal, many around the bereaved just can’t or don’t want to get it. It’s too painful, especially when we’re talking about the death of children. This societal discomfort often leaves grieving mothers alone in the silence because people “don’t know what to say.” They don’t realize how brutal silence can be.

Mary’s friends and family grew tired of hearing about her grief and didn’t understand her erratic behaviors, and so they distanced themselves from her, and she was very much alone in her final years. This shrinking of one’s intimate circle has happened to me. I have lost many of my most treasured friendships since my son died two years ago. I know why. Some things are just too hideous to look at. I’m one of them. Unlike Mary, however, I have access to support groups, psychiatry, and medication, which I avail myself of regularly in order to function in the outside world.

Inside, she and I are the same, though. We would do anything to ease our suffering, to be understood, to make sense of the senseless. She even consulted spiritualists to connect her to her dead husband and children and was taken advantage of by these charlatans. It’s not so hard to understand, as we look for signs everywhere that our loved ones are not really, entirely, all-the-way gone. But whatever momentary solace or distraction we find in anger or shopping or the bottle, nothing ever restores us. We walk around like amputees, making the rest of the world uncomfortable. That’s why she was locked away. That’s why my friends have ditched me; it’s why so many people sublimate their grief. Not for themselves, necessarily, but for the comfort of others. Those who refuse to acknowledge or deal with their grief will continue to suffer, perhaps silently, but suffer nonetheless. Mary wasn’t capable of silence, and she paid the price. She is regarded by history as one of the most reviled first ladies in our country’s history. Honestly, I’m not capable of stuffing my grief either. It is not how I’m made. It isn’t that I spend my days bleeding all over others, but I do not deny who I am or what I have been through, and I won’t stop talking about my beautiful son—ever. It is why Timaree and I write this blog. It is a natural impulse given our reverence for the written word. But over time, I have found it to be even more significant than my own healing. The writing here has given others the chance to process their own grief, to muster the herculean strength it takes to bring it into the daylight and let it breathe. I can’t say it is always comfortable having my pain and shame on such public display, but if I don’t acknowledge my grief and the fallout from my son’s death, I will certainly die miserable and alone, like Mary.

Once in a while I entertain the what-if fantasy that Mary Lincoln lives in modern America, and I imagine her walking around in a “Fuck Consumption” t-shirt. Maybe instead of being committed to a loony bin, she would check in to a boutique recovery center for a long rest, daily massages and mud baths. At least she would have choices. That’s what I regularly have to remind myself; I have choices that she didn’t, and I need to make better ones, not for the comfort of others, but for me, and in some ways, for Mary too.

lessons of a lifetime

My Facebook feed is filled this week with children starting their first days of kindergarten and parents saddened to see their children growing up. There is talk in the air of tearful drop-offs and what to put in lunchboxes. I have seen this week parents with excited children in stores with lists of school supplies gathering crayons and scissors and paper, new school clothes, all the things one needs to have a successful start. They’re all nervous, excited. I stand back and watch or scroll through the pictures, my stomach knotted, my eyes welling, my heart aching. 

Caemon should have started school this year.

Caemon never really got a chance to go to school. No, that’s not true. Caemon went to exactly two days of preschool at a wonderful Montessori school near the university where we teach. He had been going with Jodi for a few weeks to become acclimated, and then the week before his diagnosis, we had two days of drop-offs where Caemon went to school with the other kids and without his moms. We each dropped him off once. We both got to pick him up. I remember watching him before he knew I had arrived, seeing him earnestly helping with lunch cleanup. He was cooperating with the other children, looking so grown up, so capable. Both days, he came home with art projects. He ate all of his lunch. He liked his teachers. He knew the other kids’ names and talked about them.

But then leukemia struck, and he never went back. 

There are many things my son never did, and this becomes more apparent the more we are around the children who were close to Caemon’s age. We have friends whose children began writing letters and soon words when they were three, and watching these children develop written language skills has been surprisingly emotional and bittersweet.

Caemon never learned to write. He didn’t write a single letter.

Caemon never learned to jump. 

He never wrote his name.

He never potty trained.

He never drew stick figures.

He never rode a bike.

And when I think about these classic milestones that Caemon didn’t cross, I sometimes start to worry that somehow, my brilliant boy was falling behind, that he didn’t accomplish what he should have by the age of three years and five months. It’s natural for parents to worry about such things, but it does so little good, particularly when the child is no longer here. Beyond the worry, though, is sadness, a devastation that my son died before he got a chance to do all of these things, before he got a chance to be a normal kid. 

The one message that keeps coming back to me each time I face this regret that he some how missed out is this: He didn’t have time. Caemon had other things to do.

And it’s true. My son didn’t go to school for more than a couple of days on his own, or jump, or write, or draw anything recognizable, but he did do so many things:

He learned how to give warm, strong hugs to people he loved. 

He learned to say, “Excuse me; I have something to say,” when the adults in the room droned on and on.

He learned to tell a story.

He learned to memorize book after book after book and recite them word for word.

He learned to swallow a pill with ice cream.

He learned to make ice cream.

He learned to blow kisses and to receive blown kisses and tuck them into his shirt.

He learned to use “who” and “whom” correctly (although we never once mentioned this or corrected him in this particular usage).

He learned how to help other children who were also sick.

He learned to gently pet a cat.

He learned to make muffins, how to level a teaspoon of baking soda, and that the best part of baking is licking the remaining batter from the bowl. He learned how much patience it takes to wait for anything delicious to bake, and that time always passes more quickly with snuggles and tickles. 

He learned to plant seeds and bulbs. He learned when to pick a tomato and a pea, and he learned just how delicious food is when we grow it and make it ourselves.

He learned to hug trees. 

He learned to program an IV pump, to flush a line, to administer chemotherapy, to ask for a bolus, to sit very still for procedures, to breathe through pain. 

He learned to say, “I love you” when he meant it.

This list could be miles long. Caemon learned so much in his short life. He was so busy doing what he wanted to do, learning what he was ready to learn, that no, he didn’t have time for jumping and writing, but he did have time for compassion, for communicating, for nurturing, for connecting with other people (and machines).

Caemon didn’t need to learn to write. He could speak (very well), and that is all he needed to communicate. He didn’t need to jump; he could run around just fine when he wanted to. He didn’t need school because his curiosity kept him learning constantly, yes, even in his hospital bed. 

Of course it hurts that we have no child’s lunchbox in our home, no first-day-of-school picture to post, no teacher conferences or back to school nights and no “To Mommy” notes scrawled in an early writer’s hand. It’s impossibly painful and poignant that the art Caemon made in his three years and five months is all we’ll ever get from him, that his favorite books sit dusty on a shelf. I can take some comfort, however, in knowing what he could do, what he did do, and knowing how much of himself he left behind. 

My son never wrote his name, but he touched the hearts of thousands of people, reminded us to live, taught us to love more and fear less. How could I ask more of him when he gave so very much?

Caemon's first day of preschool.

Caemon’s first day of preschool.