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Nine

1934879_1163654304221_2090715_nNine years ago today, I was struggling to birth a nine pound eleven ounce baby boy with a knot in his umbilical cord, a baby boy who would turn me into a mom. What I didn’t know is this same baby boy would also turn me into a cancer mom, and exactly forty-one months later, this baby boy’s death would turn me into a bereaved mother at 9:00 in the morning.

Nines. They followed Caemon his whole life. He liked eight, but nine was the number of his birth month, his birth year, his birth weight, his death time. He beamed with pride each time he shared his birthdate: 9/5/09.

But with all this familiarity of nine, I don’t know my son at nine. My boy should be nine years old today, but to imagine a nine-year-old Caemon is like trying to picture San Francisco in ninety years. Some of the structures are certainly familiar, but most of it is hard to fathom. I don’t know what he would have enjoyed doing today, what sort of fabulous birthday food he would have wanted, what kinds of gifts I might have gotten him. I cannot picture him beyond his blonde hair and blue eyes—but would he still be blonde? I don’t have any idea how tall he would have been or what his nine-year-old hugs might have felt like. Nine-year-old Caemon feels impossible.

But that’s because nine-year-old Caemon is impossible.

I am five and a half years beyond my son’s death, and I hardly know how to celebrate his birthday. His favorite foods of his three-year-old days are obvious. Those red Lindor Truffles will always make their way into my home on his day, and the toasting of his favorite cinnamon bread will fill the house with its warm aroma. Beyond this, beyond talking about him and wearing crocodiles and telling his stories, it becomes harder to know how to set aside the time for my son when there is another life to be lived. And there is grief in that too.

Caemon’s little sister, his three-year-old sister, started preschool today of all the emotionally charged days. The time leading up to this has been so filled with emotion. She turned three at the end of July, and every day since, I have watched her, studied her, because this is my first experience parenting a healthy three-year-old. Two weeks before Caemon’s third birthday was his diagnosis date—just after his own first two days of preschool. He spent all but sixteen of his remaining days in the hospital.

The weaving of these milestones—my daughter starting school, Caemon’s ninth birthday—feels like a handful of tangled necklaces. I can’t figure out which bits belong to my grief and which strands belong to the normal pangs of a mother of a child growing up. To try and disentangle them feels an insurmountable task today, so I feel it all together, this big, shiny, messy muddle of love and anguish and fear and pride. It all belongs to me. It all belongs to my kids. My kids.

I rejoice in watching my three-year-old daughter conquer new fears and learn new words. I delight in her growth. It all reminds me of him though. She is just his size–his height his weight. She, like him, is not fond of babies. She, like him, has an insatiable appetite for muffin batter. And like him, she leads with her beautiful, gentle heart. But this year is where their paths diverge: Caemon will always be the memory of everything before three years and five months. But his sister will be continuing on. She will grow up. She will have friends and multiple first days of school. She will have hair, bruises that heal, and cuts that scar. She will have birthdays, lots of them. And she will have her own favorites.

Right now, her favorite number just happens to be nine.

 

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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.

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Image courtesy of In Her Image Photography

weight and wonder

SantaCaemonChristmas is over in just a few minutes, and I am so very relieved. As an adult, I have never been one to immerse myself in the Christmas season, but I do enjoy the particular festive and cozy feelings associated with this time of year. When Caemon was with us, I was starting to learn how to show him the magic of the season, or rather, he was showing me.

I remember when he was two, my parents took our whole family Christmas tree hunting in the forest. We bought a permit, and got ourselves a truly majestic cedar, which my dad strapped to his truck and brought to us all the way in Santa Rosa. Caemon was impressed with every step of the process: the walk to find the tree, the chainsaw necessary for cutting it, the fact that Grandpa not only drove it to our house, but carried it inside! My son would turn the lights on and off, recount the story of his grandfather bringing the tree to us, marvel at the tree’s beauty.

That same year, my tiny chef got his own little kitchen, placed right there in front of that tree on Christmas morning. I spent so much of that morning in tears seeing my son reveling in the joy of the season. We played Christmas music, drove around to look at lights. It was magic because I could see it through his eyes. Through his eyes, it was all so beautiful.

IMG_0040It has now been five years since I spent a Christmas with my son, and it is the third holiday season I have spent with his lovely little sister. This year, she is nearly two and a half, just a little older than he was that magical December, and like him, she gets it. I took her myself to find a live tree. She is obsessed with the song “Rudolph the Red-Nosed Reindeer,” and she loves Caemon’s beautiful carousel. In fact, so much of her Christmas magic comes from Caemon: the shiny metal tree from his days in bone marrow transplant, so many of his ornaments, the carousel with lights and music, the glowing angel we bought the year he died. So it makes sense that as I talk about Christmas with my daughter, I am regularly mentioning her brother. And the more I mention him, the more I relive these moments, the more I wish he were here.

For the past couple of years, I have held it together at Christmas. I have been mostly okay, but this year, I have been wearing my lead apron full time.

For each birthday and Christmas since she was born, my daughter has received at least one gift from her brother, something from his wonderful stash of toys. This year, I wanted to give her three things, but the most significant was his train set. This train set Caemon got when he was her age, and we spent countless hours on the floor arranging the track just so. When he died, the train was packaged up into a small box marked “Train,” and it has floated from one house to the next just waiting to emerge again.

Last night, I cut the tape on the box and opened it up. The track was so much more pristine than I imagined it would be. It is all so clean. I sat on the floor, beneath our tree, and I assembled the train track in a figure eight, tears creeping down my cheeks. The last time I touched those tracks, my son was alive. I moved the train along, over the bridge, around the entire track as I thought of him and how much he loved it, and I hoped his sister would too.

But this morning, as is perfectly normal for toddlers, my daughter was interested in other big things–in fact, she was interested in everything but the train–and I was okay with that. I was fine that she scarcely looked at the train because I know she will eventually. I was fine with every perfect thing she did to take in the day. But I was not fine.

That lead apron pressing on my shoulders and my chest kept me close to the ground all day. I would buoy myself long enough to read a new stack of books with my girl only to plummet into anguish that he wasn’t there to help read to her. I would watch her playing so contentedly by herself and then curse the universe for making her an only child, sinking and sinking lower still. I spent the day bobbing on the roughest of seas only to be pulled under over and over again by the cold, lonely waves of missing my boy, not just for me but for her.

I will never know a raucous Christmas morning with my children. I will only know the quiet wonder of my only living child showing me her way through this season. As I wept today, I worried that I was somehow marring this day for her, that she would grow up associating it with Mommy crying, with something, someone always missing. I suppose in some ways this will be true. I know there will be years when it doesn’t hit as hard. Maybe five years is just too long. Maybe the two-year-old’s Christmas is just too poignant. Maybe I’m feeling just a little extra broken. And maybe next year will be better.

But today, no matter how much I wanted to salvage the day for my daughter, I just couldn’t fight the weight of it all: the heaviness of missing what I will never have, the acceptance yet again that nothing is going to bring me my eight-year-old son. I had to give myself permission to be an imperfect mother, to honor my son and my loss and my pain even as I witnessed my daughter’s unsinkable wonder and joy.

 

 

eight

“Today, how far might he have wandered,

My mighty hunter of dragonflies.”

-Lady Kago No Chiyo

 

Tommorrow, my son should be eight years old.

Eight.

This was Caemon’s favorite number. I have written of it before. Sometime in his third year, he decided that every series of numbers led to eight. He knew how to count, but he loved throwing in “Eight!” with his sly smile and twinkle in his eye at random intervals in his counting to ten.

But I do not know my eight-year-old son. I do not know what it is to parent an eight-year-old Caemon. What does he like? Is he annoyed by his sister? Who would his friends be? How would he like school? I think of all the things I know about him at three, and it’s so much. Adding five years to that seems like an entire lifetime. It’s more than an entire lifetime when Caemon’s life is the measure.

There is a reaching my brain does to understand who he would be. I look at other kids who were born around the same time. I study their faces, how they are sharpening and wonder how his would have compared. I look at how they speak to one another, what they laugh at, and if this is how his own sense of humor would have evolved too. I watch and I watch as these children grow, as they turn eight, and I hope to catch glimpses of my own eight-year-old son in their eyes, in their clothes, in their smiles. But it’s a fruitless act. Caemon’s chiseled cleft chin would have been his own. His platinum hair would likely have still been white as can be. His sparkling blue eyes would have continued to shine light on his world.  But beyond this, I cannot know. I will never know.

And at times I consider that Caemon would have been different too. He underwent serious treatment for his cancer, a bone marrow transplant. He wasn’t really growing as he should have after treatment started. Maybe he wouldn’t have been tall like his peers, like I always thought he would be. But again, this is fruitless. I will never know, can never know.

My son is not eight. He is forever three years and five months.

But I think I know that Caemon would have liked being eight, and I think I know that he would have liked being a big brother to his spark of a little sister. And I think I know that he would have cooked and loved outside and loved music and loved his people as much as he ever did. And I know he would have loved me and looked out for me. It’s the construct I can make of him. It’s my own imaginary age progression sketch made up of far too few memories and a mother’s simple knowing.

Tonight, I took my daughter to the market so that we could buy Caemon’s favorite treats, and I told her, “It’s Caemon’s birthday.”  She merrily repeated throughout the store, “Caemon’s Birthday! Caemon’s Birthday!” And she continued in the car on the way home. She stopped after a few moments and said, “Want to go see Caemon. Visit Caemon.” And through my tears, all I could say was, “So do I, baby girl. So do I.”

Happy birthday, my beautiful boy, my chubby cherub, my little crocodile, my firstborn, the brightest light I ever saw—wherever, whomever, whatever you may be. I will always love you.

total eclipse

For three years, I have had it wrong. For three years, until today, I somehow believed my son’s diagnosis anniversary was the 21st of August. This year, as with the past three, I have been dreading this date, and I spent some time today wondering how I might feel approaching my son’s fifth diagnosis anniversary. But then a Facebook memory popped up today, a blog post from four years ago about the first anniversary. On the 20th.

I combed back through old blogs. I looked at a calendar from 2012. I sat in disbelief, so utterly confused in my mind and my heart because the fact is, we learned my son had leukemia five years ago today. Five years ago today we took that ambulance ride to UCSF and had our first sit-down in a late-night hospital hallway. Five years ago today, my blood ran cold in a way I never knew it could, and I shook, hard, as I signed waivers and permissions and watched my son, wondering if he would survive. How could I ever forget this day? Jodi reminded me that there was little sleep that night, that one day bled into the next, that dates on paperwork probably stated the 21st, but still I’m baffled because here I am, a little blindsided yet again by one of the worst days of my life.

And now we are five years on. Tomorrow, the day I thought for three years was D-Day, a large swath of the U.S. will experience a total eclipse of the sun. I was listening to an interview with an anthropologist about the eclipse the other day, and she asked the audience to imagine what it must have been like for indigenous Americans out on the plains hundreds of years ago, seeing what appeared to be a hole opening up in the sky where the sun once was, watching their worlds go black for a few minutes only to see the sun return, their worlds gradually return to normal, only with the added knowledge that their sun could be swallowed up at any time, and they would be powerless to it.

You never forget the day a hole opens up in the sky and swallows the sun. You never forget the day that everything changes in an instant without any warning, and you never return from such an experience the same.

I know far too many cancer moms now, so many whose kids have died and many whose kids have survived, and for every last one of us, regardless of outcome, diagnosis day is the day the earth turned dark, the day we learned that a hole can open up in the sky, and we are powerless to change it.

How I remembered that day incorrectly sometime a couple of years out, I’ll never know, and I know dates don’t really matter. It’s the feeling of it, the changing of the light, the start of school, the lengthening of shadows, the nearing of his birthday, the pit in my stomach; they’re all signs, aren’t they?

Five years ago today, I drove my son to the ER. I watched him get his first IV. I sat with him as an ambulance drove us across the Golden Gate Bridge, and into the children’s hospital and up to 7-Long where the hematology and oncology team awaited our arrival. Five years ago, that hole opened up in my sky, and for five and a half months it got bigger and darker and scarier than I ever imagined it could. Five years today marks the beginning of Caemon’s end, the day that cast a permanent shadow across my heart.

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Three months prior to his diagnosis, we experienced a partial solar eclipse. Caemon made mud muffins as we sat outside to observe it. I didn’t know it, but my boy had leukemia here.

parenting from afar

Tomorrow I am flying to Austin, Texas to parent my son.

These days, my time is spent so much in the present. I wake up early with my neary-two-year-old daughter. I make breakfast, clean up spills, change diapers, negotiate nap times. I plan classes and help eighteen-year-olds navigate the challenges of going away to college. I teach the tedious art of semicolon usage. And I work tirelessly at improving myself, whether it’s improving my mental or physical health, finding time to sleep, finding time to read. Even finding joy.

But never do I get to parent my boy.

In fact, it is devastating to admit that while Caemon’s name is always on the tip of my tongue, there are many days that go by when I don’t sit with my memories of him, days that go by when I am so busy I am numbed  to the depths of my loss.

This is natural, of course. Time heals, they say. I am not sure I have healed any more than one heals from an amputation. Yes, the initial wound is gone, covered in scar tissue, but the limb is still missing. The boy is still missing. My boy. My son.

How does one care for a piece of oneself that has ceased to be? How does one mother a child no longer on this earth?

It is our nature as mothers to want to continue parenting. When Caemon died, I went back to teaching, and suddenly my students were my surrogate children. But it was never the same. Still, I went on yearning to mother until my daughter came, and then I learned that I was aching to mother two children, but not any two. My two. My boy. My girl. My kids. (Oh, how good it feels to write that in the plural.)

I find my way to two-child parenting when I can. I have learned that I can share my son with my daughter. She says his name so beautifully. She begs to look at his photo books, delights in watching his videos. I will involve her in his legacy as much as she is inclined, but there comes a time when a mom wants to give her attention to just one child at a time. And this is why I find myself flying to Texas.

On Sunday, I will shave my head with the 46 Mommas—my tribe of cancer moms, too many of whom have also lost children. I will cry. I will think constantly of my son. I will leave my little girl with her other mom so that I can do this wholly and without worrying her gentle heart. I will watch Caemon’s videos and play his music and listen to his voice and talk about him day and night.  I will say his name over and over without apology.

Next year, I’ll fly to another city, and I’ll do the same. I will keep raising money in his name, keep raising awareness and using his beautiful smile to draw people in. It’s what I have left. It’s one real way I can parent my son.

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Mommy and Caemon

Should you want to donate to my shave fund, which funnels to Caemon’s Hero Fund for JMML research, please follow the link below:

https://www.stbaldricks.org/participants/CaemontheCroc8

 

the eternal what-if

Relapse.

It was four years ago today when Jodi and I sat packed in a conference room with what seemed like the entire pediatric oncology and bone marrow transplant staff from UCSF, four years since that word, relapse, fell into air thick as mud.

I remember that day one of the bone marrow transplant specialists told us that we could take him home if we wanted, that we could make him comfortable, that he could eat anything he wanted. But I didn’t want to read the subtext. Instead, I listened to his oncologist telling us she had one more card to play, that she wanted to try one more thing.

After we left that room, everyone started to look at us differently. Some nurses gave us long hugs. Some nurses couldn’t bear to look at us at all. We were moved to a bigger room, given a bigger bed. But grasping what was really happening was nearly impossible.

Later that day, I told Caemon’s nurse in the anteroom of his hospital room, “I don’t know how to simultaneously prepare for my son to live and to die.”

Her eyes lowered. She leaned against the wall, slid down to the floor, and said, “I hate that I’m the one saying this, but I think you have to do the latter.” My blood ran cold. I simultaneously rejected the possibility and knew she was right.

The next day, Jodi and I met again with Caemon’s oncologist, and while she had talked about that last card she wanted to play, she told us very plainly, her head in her hands, “I don’t think I can save him.” I remember Jodi telling her we believed in her, urging her to remember miracles, and she recounted some.

We decided to stick with hope, to believe somehow in a miracle. There were other plans in the works: get him healthy enough for another transplant, start him on some experimental treatments, irradiate his spleen, consider a splenectomy, and so much more. The narrative around Caemon was that we were going to keep hoping as long as we could. We had to. If there were any specks of hope to be had, we were going to hang onto them like helium-filled balloons ready to drift away with the slightest tug of a breeze. Believing the alternative was too much.

Now, four years on, I sometimes wish I had allowed myself to grasp that he was dying, that I would have let some of those balloons go so that I could really see what was happening to my child. While I doubt much would have changed with regard to keeping him in the hospital, proceeding with the experimental treatments, etc., I wonder if the end of his life would have hit me the way it did. I wonder what it might have been like simply to hold him after he stopped breathing rather than watching huge teams of doctors and nurses trying to save a boy who had already gone. I can’t know that. It wasn’t his path, and his relapsed disease progressed far more quickly than anyone could have imagined. But I still wonder.

I don’t allow myself to think much about the day Caemon died. I lived it once, and the trauma of it is too much, but sometimes, when it does flit through my mind, and when I hear other parents’ accounts of holding their children as they die, I wonder what that must be like to simply know one’s child is dying, to prepare oneself. And maybe I did know. I never would have been ready. How could I be?

The next ten days are always a difficult march toward the end. Ten days were all he had between the time we learned of his relapse and the time he died. Ten days are all we had left to snuggle him, to take him in, and even though I hadn’t fully accepted he was dying, when I look back, I do see that I soaked in every moment, feeding him his favorite foods, reading him his favorite books, surrounding him in his favorite people the best we could, spending nearly every moment in his bed.

Maybe even without accepting his impending departure, I was, at least, able to prepare him by letting him know I was there, that I loved him with all of my being, that somehow I would survive. Maybe he needed to go just the way he did, the scent of hope still in the air, one last balloon floating away by his side.