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.

 

 

bilocation

Eight years ago today, my wife and I were celebrating. We had just learned that we were going to be moms, that I was finally pregnant. I was equally terrified and thrilled. That night, at our New Year’s Eve dinner, I gleefully replaced my usual cocktail with a mineral water. I felt both giddiness and nausea when I attempted a sip of champagne at midnight. It was the best start of a new year of my life.

Four years ago, I spent New Year’s Eve by my son’s hospital bed, watching him lie there so very sick from his bone marrow transplant. His liver was causing problems. He was sleeping nearly all the time. He was hooked up to morphine and IV nutrition, drugs that would help his body accept the new marrow, antibiotics, antivirals, antifungals, an experimental drug meant to save his liver. He had two IV poles. He also had mouth sores, rashes. He had not a single hair on his body. I was equal parts terrified and hopeful. If he survived this, we might just have our boy back. We rang in the new year with a fever and his nurse drawing blood cultures to ensure his central line wasn’t infected. That was my most terrifying New Year’s Eve to date.

Time keeps passing–four years now–yet this time of year keeps half of me in the hospital back on the cusp of 2012/2013. Part of me will forever be at my son’s bedside, wishing for him to be better. Part of me will forever be wondering who he might be now, what it would be like to have a son and a daughter.

But another year is leaving without him. We spent time with family over the holidays only to feel his absence all the more keenly when his little sister played with all of her girl cousins while her one boy cousin played by himself. He is six. He should not be the only boy in our family. There is a gap in their generation where Caemon should be, and each time all of our family’s kids are together, that gaping Caemon-shaped hole sucks me in, and even as I celebrate my daughter’s joy at having so many adoring cousins, I ache with my son’s absence. I want to be present, but half of my heart will always live where he was alive. Were I in some sort of science fiction novel, I might travel back and forth between my two children or steal him away from another parallel universe to have my two kids together. But I know that is not to be.

And while I may not have the capacity to move through time or flit between realities, I do have my dreams. The other night, as I slept next to my daughter, I dreamt of my son. I knew he was coming to visit for a short time, that I would not get to keep him, but I also knew I would be able to hug him. I couldn’t see his face, only his body and the back of his hair. He was a bigger boy–probably seven. I remember being at peace with just a quick hug before he had to go. He only spoke a few words, which I cannot recall, and then we embraced. He still felt like mine. In my sleep I also pulled my daughter close, and for just a moment, I felt whole.

Today is the last day of our fundraising year for Caemon’s JMML Hero Fund through St. Baldrick’s. If you wish, you can make a donation to his fund through my St. Baldrick’s fundraising page here: https://www.stbaldricks.org/participants/CaemontheCrocLucky7

seven

This morning, as I took my daughter on our morning walk through our neighborhood, I rounded a corner to find a group of little boys cheering and laughing in front of a house with a sign declaring “The Party Is Here!” It was fairly early in the morning, and I was surprised to see a birthday party starting before 9:00 AM, but then I saw that these boys, taking turns hitting a homemade pinata, were all clad in their pajamas and must have been at a sleepover birthday party. The boys laughed and chided one another; the dad of the birthday boy provided counterweight to the pinata as they took one last swing, and candy spilled everywhere. He smiled at me as I pushed the stroller across the street. He was beaming, brimming with all the feelings a parent has upon watching a child celebrate growing up. As I passed, I took one more glance at these boys, trying to guess their age, and I concluded they must be seven.

Seven-year-old boys.

I sobbed silently as I made my way down the street. Caemon should be seven today. We should be holding a birthday party. He should be hitting a pinata, reveling in all that a kid’s birthday is with his closest friends. He should be, but he is not.

Since Caemon died, I have found myself watching boys from a distance trying to figure out if they are his age. I want to be able to imagine what he would look like at five and six and seven. It’s really hard to do. Would he have been tall and skinny? Would his treatment have made him shorter-statured as it can do? Would his hair have remained the same platinum blonde? Would it have grown back wavy? What about his voice? All I can do is guess. I can piece eyes and hairlines and mannerisms together from boys I see like cut-out pictures from magazines, but none of them really help me see my boy’s future. There’s a reason for that. He only lived until he was three years and five months. There is no seven-year-old Caemon or five-year-old Caemon. There never will be. But I still play the game. My heart appreciates the momentary fantasy of picking up Caemon from school or watching him read to his little sister. Fantasy, though, is all it will ever be.

I am finding my son’s birthday this year to be more difficult than years past. Last year, I had a newborn to care for and a Little Free Library to open. This year, well, I don’t quite know what to do. I have been thinking about his birth, how seven years ago I stood laboring under the full moon supported by my wife and my mom, how I stayed so strong even though my big baby boy took his time and didn’t arrive for a full 36 hours after my water broke. I remember knowing him the moment I saw him. I was so excited, so overcome with love for this gorgeous child.

And I remember his birthdays, the ones we got to celebrate: his first when we barely had enough money to buy him balloons, his second when we took him to Train Town, and his third–just after diagnosis–when the whole family came, and so did the fire department with their hook and ladder truck, and later on the day of his birthday itself when we met up with his cousin at the Exploratorium, but only after a platelet transfusion. He was so sick and so, very happy to be at his favorite place with his favorite kid. I remember how he didn’t quite know how to blow out candles. He would blow through his teeth to make the sound. I remember how our dear friend Carol made every one of his beautiful birthday cakes. I remember them all, but, then, there aren’t many to remember.

My birthday is just four days before Caemon’s. I turned 41 this year. It’s shocking to be in my forties. I wasn’t ready–not last year, not this year. And it isn’t so much that I am afraid of aging. It’s more that I feel like the last years of my thirties were stolen. I was almost 37 when Caemon was diagnosed, and from there, the years got dark for me. I remember trying to celebrate my birthday after he died only to fall apart. My birthday sends me into a tailspin. I was supposed to share this month with my son. The year Caemon was born, I went to birth class on my birthday, ate spicy Thai food in hopes of bringing on labor. I was so full of joy that I would soon meet my baby boy. My birthday is forever tied to my son’s because when mine came, it meant we were just about to celebrate him, and that, to me, was the best gift. Now, mine comes, and then his looms heavy. We celebrate that he was here; we mourn that he is not. None of it feels fair.

When Caemon turned two, we had done a lot of celebrating. Jodi’s birthday is just two weeks before mine, his cousin’s a week before that, and then we had mine and his, and later that month, my grandmother was turning 90, so we all went to celebrate with her. When it came time for us to sing “Happy Birthday” to her, we tried to get Caemon to join in. Instead, he announced, “I’m tired of happy birthdays!” I think about that day sometimes when my birthday is a struggle, think about his pout, the way he wanted to hide under a table or go outside to play. It makes me smile because sometimes I get it. Sometimes happy birthdays are just too much.

But I haven’t mentioned one thing: I am a lover of birthdays. I love to celebrate the people I love. I even love my own birthday–or I did. This July, I got to throw a first birthday party for Little Sister, and I wept with joy finding decorations, making her a strawberry cake, watching her take pleasure in unwrapping gifts. Hers is the beginning of our family’s season of birthdays, and I’m glad. There is no birthday fatigue when hers rolls around–just joy that she is here to celebrate. She deserves that. I deserve that, and, oh, how I missed it.

So today, because I am a lover of birthdays, and despite my tired heart, I celebrate my son, a boy whose lifetime was far shorter than any of us wanted it to be. I celebrate the vibrant soul I had the honor of ushering into the world. I celebrate the love he showed me, the laughter he brought to me, the wisdom he taught me.

But I won’t stop wishing he was here to do it too.

Happy 7th Birthday, Caemon the Croc, my favorite boy in the whole universe. I hope wherever you are the chocolate is plentiful, the music beautiful, and the love as big and bright as the sun.

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.

 

the beauty of bald

In eleven days’ time, I will be waking up bald in a Las Vegas hotel room. While that may sound a bit like I’m about to be the victim of some urban legend, this will, in fact, be by choice. I will be shaving my head with a group I have wanted to join for three years now: The 46 Mommas. This is a group of cancer moms who raise significant amounts of money for St. Baldrick’s through annual head shaving events. They are fierce and brave and strong and singularly motivated to end the disease that has impacted their children and far too many others. They are clearly my tribe.

No mother ever expects her own child will become that beautifully bald cancer poster kid. I certainly didn’t. I couldn’t imagine my son without his hair, but that baldness became our reality. Caemon was that child. He still is.

J16

The night of Caemon’s diagnosis, that first night we ever spent in a children’s hospital, I remember the hematologist complimenting Caemon’s hair. He couldn’t get over how beautiful it was. And it was beautiful–like corn silk kissed with sunshine. But I also remember wanting to tell this young doctor that he couldn’t have it, as if my protective mama bear instincts were any match for chemotherapy. I  remember that night telling my brother that as soon as Caemon’s hair started falling out, I would shave my head. He agreed that he would too. I felt a tiny spark of power in that decision on a day when I had never felt more powerless. But the head-shaving was not to be.

When Caemon’s hair did start falling out, he had what we called his “hospital haircut.” We opted to shave his head to keep the falling hair from annoying him. I offered at this time to shave my head too. After all, we had the clippers in hand, and I was ready. When I said, “Caemon, what if Mommy has a hospital haircut too?” He yelled at me. “No! I don’t want Mommy to have a hospital haircut!” I was a little surprised, but then I shouldn’t have been. Caemon had a thing about wanting me to look a certain way. There were days when I would come in from staying the night at Family House, and he would point at my various accessories: “Mommy! Take off your scarf and your headband and your jacket and your purse and your glasses!” I think he wanted me to look simple. like I did on our days at home, maybe even disheveled. I think he needed the comfort of a mom who wasn’t going to change in the midst of a world that was so unpredictable; the only constant there seemed to be change. And a mommy with a shaved head was just too much. He needed normalcy. His own freshly shorn head was too much already.

So I didn’t shave my head, but I did watch as my son’s IMG_8023haircut became less a haircut and more the signature look of a child with cancer. At first he still had a bit of stubble, his beautiful widow’s peak still framing his face. He had eyebrows and his glorious eyelashes too. But after a couple of months of his most intense chemo regimens, all of his hair was gone. He looked like a cancer patient.

Caemon didn’t like being bald. He didn’t recognize IMG_8402himself. One of his favorite nurses was a brilliant caricaturist, and he drew Caemon a portrait one night, complete with his bald head. Caemon, in a rare turn from his usual polite self, threw the picture and had a fairly epic meltdown. Later, we gathered that he didn’t like himself bald, and he confirmed this. (This same nurse would later draw a picture of Caemon with a full head of hair in our guest book at his memorial service.) There were times Caemon wanted me to take photos of him with some of the fancy machines that visited his room, and he insisted on putting a hat on for the picture. He needed so desperately to  look more like himself.

I would think abouscrubst the other kids we encountered in the hospital halls, the teenaged girls who had a much more established physical identity than my three-year-old son, and I know it had to be painful at times for them not to resemble their former selves. But there was a sense of solidarity around it too. When Caemon did finally get his first hospital haircut, we took him for a walk around the halls, and he saw other kids bald like him, and he would comment on their hospital haircuts. Some of his favorite nurses also sported bald heads, and he began to see them as kindrid spirits, asking if he could touch their heads. He needed that baldness to have meaning–not to represent illness and helplessness, but instead to symbolize something more important. His bald nurses were in control, so maybe his baldness could be power. When those nurses were in the room, it certainly was.

But baldness was still not acceptable for Mommy. I broached the subject of shaving my head more than once throughout Caemon’s treatment, thinking he might change his mind, and, selfishly, thinking it would be so much easier for my life in the hospital. He was always just as adamant that I keep my hair, and I respected that.

As strange as it may seem, after Caemon died, one of the clearest physical memories I had was of his bald head. It still is the most visceral, the most easy to recall. I kissed and stroked and held his head hundreds–maybe thousands of times–his scalp smooth, but slightly sticky. I can recall that sensation more easily than I can the feeling of his little body wrapped around me in a hug. It is at once comforting and heartbreaking.

So now, as I prepare myself for this shave, I find myself thinking that he might be mad at me if he were here. I try to imagine what an almost-seven-year-old Caemon would think. Maybe he would have gone with me. Maybe he would have shaved his own head too. Maybe, instead of being mad, he would have been proud of me. All I have are maybes, and then the memory of his protests. But I am still shaving in my son’s name, in his memory. I will say a quick hello to the clippers, maybe give them a little pat like Caemon used to do. And when I am bald, I will admire that my head is shaped like his was, and that my ears stick out like his did. And in my heart, I will stroke his sweet pate, give him a kiss, and remember why work like this must be done.

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Now, I humbly ask for you to support me in my efforts to raise some serious cash to help beat childhood cancer. St. Baldrick’s provides more funding to childhood cancer research than any other private organization. They directly fund the work Caemon’s doctors are doing with his cells, and they are committed to putting an end to childhood cancer. On a very special note, any donations to my fundraising efforts will funnel directly to Caemon’s Hero Fund for JMML research grants, and even the tiniest donation makes a significant impact. I thank you for helping me make my first shave with the 46 Mommas fruitful and memorable. To donate, you can click the link below: Timaree Marston’s 46 Mommas Fundraising Page

 

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