Tag Archives: grief

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.

farewell, dear friend

Yesterday, a friend of mine died, a friend I never had the pleasure to meet. Three and half years ago, she began commenting on this blog. She found me through a mutual friend and followed Caemon’s story to the end. When my boy died, this woman I had never known but who wrote the most beautiful comments reached out to me. Her only son had died too, as had her husband. And so even though we were decades apart in age and oceans apart in space, we became sisters on this dark path that is grief.

When Caemon was diagnosed with cancer, I never imagined the good that could come out of it, and when he died, I certainly never thought that there could be bright spots. I have learned since that the bonds I have formed with other bereaved parents and other parents of children with cancer are some of the truest and deepest I have known.

Throughout the past few years, my friend has come to feel like family. She has sent me voice messages on my birthday, poems and letters for my son, my wife, my daughter, myself. She has shown me that grieving openly and earnestly and without apology is important. Throughout the past three years, she has grieved with me through the magic of the internet, remembering every anniversary, honoring my process, helping me see that one can live with this albatross of grief with grace. We have read one another’s writing, commented thoughtfully, offered words of comfort and warmth, and more than anything, we have understood the other.

I had dreams of traveling to Australia and finally giving her a hug, of sitting with her all night talking about our sons, crying and laughing together as I knew we would. I know I would have enjoyed her cheeky humor even more in person. I think she would have liked my own sly wit. It would have been more a meeting of long-lost friends than internet strangers, for we were two bereaved mothers, two women longing for their sons, two women so familiar with pain but unafraid to laugh, two travelers in lives that became almost too painful to bear, two survivors of the worst loss. We knew one another’s souls. But that meeting was not meant to be.

I will not be able to see my friend off in the traditional sense. I won’t be attending a memorial or visiting her grave, but I can say my goodbyes right where we said our hellos. And as much as I already miss her, and as much as I know everyone she touched misses her, I also know she has finally escaped the unrelenting suffering of her grief.

T, sweet friend, wherever you are, may you finally revel in the twinkling of those lights.

You can read T’s poem “Twinkly Lights” inspired by a post about Caemon on her own blog here

 

 

the boy behind the glass

 

 

IMG_0017Recently, I was looking at photos on Caemon’s iPad, a gift our family gave him for his bone marrow transplant. When he received it, my budding photographer quickly found the camera function and began snapping pictures. He
photographed his feet, his hospital room, his bed, the ceiling, and now and then, he captured his gorgeous face. These images of his face, though, are usually somehow obscured. Some are blurry. Some capture only a small glimpse of him–a sleepy eye, a sly smile. And then there are these odd photos resulting from him tinkering with his camera settings, thermal images of sorts, which capture him in the midst of expressions so uniquely Caemon, moments when his lips were pursed in concentration or his grin seemed to broaden because he was in my arms. These are the pictures I want to see most. But instead of appearing true to life, they feature wild, Technicolor versions of Caemon. It’s him, but not quite. I can’t quite see my boy. IMG_0019

Three years and one month have passed since I last saw my son. Soon–in four months– Caemon will have been gone longer than he was alive, and as this reality looms, I find myself straining more and more to remember his voice, to feel his little arms around my neck, or to quickly pull his face into view

Naturally, I rely heavily on photographs and videos. Any time I find an image of him that I either haven’t seen or have scarcely seen, my breath catches. For a moment, I see a new expression on his face, an angle that may not have been captured before. I study the image, commit it to memory. It becomes one more piece of him that I can carry, one more inch of my son for me to know.IMG_0015

But I can’t quite do that with the iPad images. I have tried my hardest to edit them into normal colors or black and white or some form that is more recognizable, but to no avail. These are Andy Warhol’s version of Caemon, not the boy I birthed and held and kissed. They won’t quite let me access the nuances of those moments the photos were supposed to capture. This has plagued me for three years and one month, and any time I see those images, I strain to see him. 

I can’t help but notice that this is how so much of my memory of Caemon feels now. I can see his face, but I can never fully bring it into focus, as though I am perpetually looking at his image through foggy glass. Lately, I find that the photographs are all I can remember, and this is unsettling too. I can remember the days that were chronicled with pictures; the others are hazy, and while I am glad to remember them, I am also troubled by how much less real Caemon feels. So I challenge myself, and I challenge Jodi, and she challenges me to remember him without pictures. We recall moments. “Tell me about what you two would do when I left for work,” she will ask me, and I will piece together bits of memories of baking muffins or walking to the park until soon I am remembering a life with my son more fluently.

We do this more regularly now. “Do you remember what he looked like when he sat at the counter drinking his tea?” one of us will ask. “What about when he would make a stack of books and sit in your lap to read?” “Remind me of how he looked when we turned that cardboard box into an oven.” It’s a game we play, Jodi and I, the game of remembering our son as he was, the way only she and I knew him. Those are the memories subject to decay as our minds age, as time wields its relentless eraser. We tell these stories and invoke these images, remind one another of the tiniest details the best we can. We do it over and over in hopes that we will etch them permanently into our consciousness. But for all that work, there are still things we have both forgotten. I will try to remember a certain phrase he used, and it will be gone. I try to remember the lower register of his voice before leukemia, and it’s just beyond my reach.

He is always just beyond my reach.

I so desperately want to see him, to hear him, and oh, to smell him, but he is fading with time as he must. It would be too hard for us to keep living were we to remember him with the same detail as we did the day he died. Time must soften the edges of our boy in order to ease the pain, but isn’t this the rub? I don’t want the haziness of a soft-focused son; I want the sharp clarity of a boy still here.

Recently, Little Sister has started to notice photographs of children in our home. Naturally, among these are photos of her brother. She smiles at the images when she sees them. Just last week, she was expressing even more interest in the photos of her brother, so I carried her around looking and then stopped in our hall where our family pictures line the walls. “This is your brother Caemon,” I told her. She grinned widely, eagerly. She seemed so happy to see him, and I wept to think she wouldn’t know him, but I delighted in her joy all the same.

The next day, I wanted to show Jodi her reaction to her brother’s photos, so I took her to IMG_1099the hallway. I told Little Sister, “Let’s go look at your brother,” and her head quickly turned toward his image. Once again, she grinned broadly, cooing, giggling even. She reached her tiny baby hands toward the glass, wanting to touch him, and Jodi and I both welled with such a flurry of emotion: relief that she seems to love him even without knowing him on this plane, sadness that she doesn’t know him here and now. More than that, we keenly understood what it is to want so fiercely to touch that handsome face only for the glass, time, and the cruel, cruel reality that is Caemon’s mortality to keep him forever out of reach.

Still, there is something in her desire to reach out, something from which I can learn. Her joy doesn’t end when she cannot feel him. She continues to smile and coo and even squeal just because she can see him. Of course she continues to try, and the glass is amassing a wonderful collection of baby finger smudges as a result of this new ritual she enjoys, but she seems to revel in just being able to see him at all.  I’m trying to allow myself a similar joy, trying not to feel only a greater sense of yearning when my hand is stopped by the two-dimensional representations of a boy no longer here.

I am fortunate to even have these images of my son–vibrant, shining, alive. So long as the photos are here, I can remember that I did indeed have a son, that my daughter had a bigger brother. Time will undoubtedly continue to steal strands of his memory. He will grow more and more difficult to reach. But nothing can rob me of the way he burst my heart wide open. Nothing can erase the imprint that boy has made on me.J17J6

 

 

Thirty Days of Caemon–Day 21: Mosaic

From Jodi

While Caemon’s legacy is filled with inspiration and wonder, there is always a duality at work. His death shattered our lives, and we were left with the shrapnel of our hearts, our identities, and our relationships littered around our feet. We lost friends who should have been there for us during our darkest hours but could not, for whatever reason. We learned that some would not walk this path with us, and we came to accept that we had to do our heavy grieving alone. There were many months of rummaging around in the wreckage trying to make sense of it, and later, trying to put it back together. I admit, at the time I didn’t know if I had the heart to try. But along this journey over two years, as I have begun to pick up and examine the pieces of my past, I see that some pieces don’t fit into the new mosaic of my life, and I must discard them. They are useless to me now. New pieces, sometimes surprising ones, show up to fill in the gaps: friends I’ve made who have given me hope and strength, volunteer work with the toddlers at our church, a new project at work, a peaceful living environment, Caemon’s legacy work, and of course, always the longing for another child to love.

I am a work in progress. Despite myself, I see a new picture emerging, and it includes more than loss, more than tears. It’s the beautiful faces of my cousins Willow and Angie, Caemon’s Goddess Mothers, whom Timaree and I have gotten so much closer to since his death; it’s the music and art of Thursdays, the peace and solitude of nature, and the garden full of tomatoes and sunflowers that we will grow this summer, the buzzing bees always at work.

I couldn’t have predicted it or planned it this way, and left to my own devices, I probably would have pounded the remaining shards of my life with my fists, pulverized them to dust, and then raised a bloody middle finger to the sky. Here is where Caemon’s legacy really saved me personally. Even in death, I am his Mama, and I owed it to him to be the person he loved. I had to try harder and do better. I couldn’t succumb to despair. If I fell down, I had to get up and try again. This is what I taught him when he was alive, and I would be devaluing those lessons by not living up to them. I would put my pain to better use, and the new people in my life would show me how. Together, we work on this mosaic, always keeping in mind how each piece honors him and heals us.

I am surprised that what my wife and I have been through is actually survivable, and even more surprised that there are as many good days as bad ones. There are days I’m actually happy, and I forget to look over my shoulder for the misfortune sure to befall me. Children keep us firmly locked in the present, giving us barely any time to brood, or that’s how it was with my son. He seems to be helping me stay more in the present even now, and I am grateful that I get a chance each day to be the person he thought I was.

Joyful Jodi

Thirty Days of Caemon–Day Twenty: My Boy the Muse

Caemon has been inspiring me to create since before he was born. I have been writing about him his whole existence, painting little things for him, even making up songs. The heart-swelling love a parent feels for a child has a way of doing this over and over when we let it, and sentimentalist that I am, I often let it. It’s no surprise to me that some of the best writing of my life has come from my love for him and my losing him. My golden-haired boy with his Pacific Ocean eyes have been and forever will be a great source of inspiration.

Why it would surprise me that others are similarly inspired by my boy to create I do not know, but the fact is, in introducing my boy to the world, some of that world has gone on to remember him in their own beautiful ways.

It really started before he died. The youngest artists, my son’s peers, regularly drew and painted for him while he was sick. They drew him, and they drew things they thought he would like, and his drawings decorated his walls. Nurses, friends, supporters all created for him too. One nurse made brilliant caricatures; another made crocodiles on sticks. It was so touching when we would awake in his hospital room to find new treasures made for our sweet little boy.

20121111_125916In the hospital, Caemon found his own creative streak, once or twice deciding to use the easel and paints in the playroom instead of going straight to medical play. With little patience for realism, Caemon preferred to create in squiggles and lines, circles and spots. We still have his treasures around our home, the most priceless pieces in our art collection.

But the work that others have created in his honor is endlessly touching. There are a few pieces in particular that stand out to us though.

When Caemon died, we needed a vessel for his cremains. We didn’t want to buy something generic. We didn’t want a traditional urn. Instead, we wanted something that he would like, and so, we put the call out, and a friend of a friend came forward and offered to make him a small box. She came to our home just a few days after he died, and she talked with us about him, about what he liked, what his aesthetic preferences were (and, yes, our three-year-old had his very own aesthetic). She spent time with his things, sat in his seat at our big farm table, and she just felt him.

IMG_0126The day before his memorial, the same day we picked up our son’s ashes from the funeral home, she  brought us the box. It was whimsical, sweet, and so very Caemon with his name spelled out in blue, green, and orange letters on the front, words like “dance,” “laugh,” and “cook” written in different textures of rope on the sides and back with corresponding images of cooking pots and hearts, and then on the inside, a wooden blue butterfly—much like the Morpho butterfly—our boy’s soul transcended. And finally, on the bottom of the interior of the box, the word “Live” in wooden letters, along with two fantastic wooden teapots. Complete with a latch on the front (oh how he loved latches), this is a box our son would have treasured. When an error happened with the size of his bench plaque at the Oakland zoo, we were given the original, and so this now graces the top of his box, our own addition.  His is not a marble urn, not a solemn vessel; in fact—dare I say it?—I often smile when I look at his box. It contains my son’s ashes (well, most of them—other bits are scattered in forests and canyons and oceans), but it also quintessentially captures his huge spirit. And we add to this creation from time to time. It contains his tattoos, special stones, and feathers, lots of feathers.

IMG_0130The box has been a reminder of the inspiration our son can be to those who haven’t met him, but we didn’t necessarily know that others were experiencing Caemon as muse in their own art. When a friend contacted me last summer with an urgent need to come for a quick visit, as she had something for us, another gift of our muse-child came to us. She presented us with a fantastic hand-made purple box with hearts, and inside, a ceramic sculpted heart with our son’s face in the center. You see, our friend’s friend is a brilliant sculptor. He makes countless glorious pieces, but just before he encountered Caemon’s story, he had begun making these amazing ceramic hearts, hearts of all kinds: hearts with butterflies emerging from them, hearts with text, each one with its own message. In Caemon’s story, he found inspiration for more. Caemon’s heart is a vibrant purple with a grid of hearts connected by other hearts and a photo of our boy in the center. This artist—Marcanthony L.–was taken with how many people Caemon’s short life—and death—had connected. On the back, he painted, “Healer of Hearts,” a line we wrote in his obituary, a line this artist had never read. For the next few months, as he showed and sold pieces from his “Having Heart” series, Marcanthony would donate a generous percentage of his sales to C is for Crocodile.  He not only created with our son as muse, but he gave in his honor. Our boy’s influence continues to spread.

And then there is the music written for our son. I have mentioned before our very talented musician friends, and one, a composer and cellist and all around brilliant soul, composed a cello piece for Caemon, for us. It is beautiful, intense, and it captures his whole life, from the waiting we did before he was even created to the mourning we have done in his absence. The middle of the piece is bright with bits of whimsy and joy, and it is bookended by longing. She wrote another piece, this one for guitar and with lyrics, which she shared with us on his fifth birthday last year—our son, immortalized in music, and oh how he would have loved it. I find this song playing in my head regularly, bringing ready tears, both for my boy and for the love of this friend who so exquisitely creates in his honor. (See the slideshow we paired with this lovely song at the bottom of the post.)

IMG_0128His inspiration has come to so many people, people who have made gorgeous IMG_0132crocodile gourds and lovely sun catchers, people who have written poems and letters and essays and stories for and about him, people who have written his name in the sand or created nature altars with him in mind, people who have photographed the rising sun and crocodile forms they find in the clouds. He is burned into the hearts of so many, and through all of this beauty, I do see the very imprint of his soul.

I’ll be honest and say I wish Caemon’s life as a muse had come from beating the odds and overcoming the worst of foes. I wish our son had emerged heroic, triumphant, alive from the horrible depths of his disease, that from his victory, we would have been all the more inspired, but that was not to be. The inspiration he offers comes from a boy with a heart too large to be contained in such a small body, a soul too wise to be bound to this earth, a life so full and bright and poignant that it was destined to become the stuff of not just legend but the source of beauty itself.