wortlos: a decade

There aren’t a lot of words to use ten years after the worst words are first spoken. What is there to say when I can hardly grasp that a full decade has passed since I held a very sick boy through the night wondering what could possibly be wrong only for our family to be ushered in the morning into blood tests and hours later an ER and an ambulance ride and an oncology wing of a children’s hospital?

I have written those series of words so many times that I no longer think them when I write them. They are a well-rehearsed script for a woman whose life I do not recognize. I was a mother to a boy who was very sick, but I am now a mother to a girl who is not, who is twice his age. I scarcely remember that scared mother. And I am that mother. My brain cannot grasp this with any amount of logic.

For the past few years it has been difficult to write or say much of anything. People grow uncomfortable talking about loss after so long, even if they miss him too. I grow uneasy not knowing what to say. I meet new people now, parents of my daughter’s peers, and I find myself reassuring them when they learn of my boy, when they are sorry for my loss, when they cannot imagine the depths of my pain. I tell them sometimes that it’s okay, that mostly I am okay. I tell them that it is awful, that they should not try to imagine because it is far, far, far worse than imaginations can entertain. I say too much. I say too little.

The words that carried me through the diagnosis and the treatments and the death and the grieving and the longing and the missing are themselves so fleeting.

I miss them. I need them.

I miss him.

I used to feel that in keeping the telling alive, I kept him here. I kept him closer to me, to everyone else, and that meant I was coping or healing or something. It was something to steady me when the pain rocked me hard. In losing the words, what happens to him? But it was easier then to talk about the timbre of the pain, easier to puzzle it out. It was fresher, the fluency crisp. Now, I go weeks without giving the grief a name. It takes the quality of sunlight shifting, calendars growing swirly with birthdays and school. It takes the days and my moods growing equally shorter and less predictable, tears coming easier, to begin to grasp that it is here.

Oh, hello, Grief. You are looking different now, aren’t you?

Crunchier, dustier, muddled and muddied up with new sorrows and losses. A whole pandemic. Grief begins to look like a stranger in a store coughing near still-masked me, and me feeling rage well up, and when it does, tears spilling out along with the muffled and fast-tracked words, “My son had leukemia and died,” and I am shocked and the stranger is shocked because I wasn’t expecting that dark visitor, and certainly neither was he, but there it is, ugly and uncomfortable, words sitting in thick air, and I am here still just needing to protect my living child and my dead child from invisible predators.

There is a shortage of eloquent words for this stage of grief. Apologies are about all I can muster.

Maybe it’s a supply chain issue. Not enough to go around for so much weltschmerz and a mother’s patina-coated grief too.

Maybe words are overrated. Maybe they will return. I try not to agonize over it too much until days like these when I need them so.

Ten years. Soon his thirteenth birthday. Another five months and the tenth anniversary. The years keep piling up; the words keep floating away.

Caemon, almost three, a couple of weeks from diagnosis.

1,249 days

Four years ago, on December 26th, I was nearly ten weeks pregnant. Jodi and I were going for an ultrasound, though, to confirm this tenuous piece of news because my doctor was concerned the baby might not be developing. It was a day of such uncertainty, the greatest terror I had felt since the day of my miscarriage a few months prior, and before that since the death of my son. However, within moments of the ultrasound tech placing a blob of warm gel on my belly and moving the transducer around, there on the screen was a little peanut-shaped blob with an unmistakable flickering heartbeat. My eyes poured tears, and relief transformed those tears into laughter, into hope.

Today, that little blob with the flickering heart is my vibrant daughter. Yesterday, on December 26^th, my daughter turned three years and five months old. Three years, five months. That amounts to 1,249 days I have spent with this wondrous child—exactly the same number of days I spent with her brother. And today, today I have a child who has been on this earth for 1,250 days, and that I have never known before.

Before my daughter was born, Jodi and I took on the task of finding a new pediatrician. It was important to us both to find someone who understood what we had gone through, who would pay extra attention to our daughter. Just in case. The doctor we found had been in medicine for decades. He was sharp. He was warm. And he had known too many bereaved parents. I remember the wisdom he shared that day as we sat in his office as my daughter rolled around in my belly. He told us it would be hard those first few years, that we would probably overreact, that we would probably be hyper-vigilant—that he would be too. And he said that when our daughter grew to be the age Caemon was when he died, it would start to get better. He had seen it time and again. One day, these two bereaved mothers would relax into parenting what he predicted and hoped would be a healthy child.

And here we are. We have reached what he called “that magical age.” My daughter is now older than her big brother ever was, ever will be. She is healthy. She is wildly articulate. She is moody and energetic and willful and spirited and empathetic and curious and funny and wise, so wise. She is so much of her brother and she is so much just her.

I have watched her these months as she entered three. I didn’t know what it meant to have a three-year-old out of the hospital, a three-year-old without leukemia, a three-year-old without chemo and pain meds and steroids and all of the hardships that came along with that life with my boy.

As it turns out, it’s not that different in many ways. She has strong opinions, big feelings. She tells me regularly that her name is not her own, that she isn’t anyone—the very same existential declarations that led me to find the “Croc” moniker for Caemon. I’m left wondering from time to time if maybe it wasn’t morphine that made him reject his name, that maybe it wasn’t always feeling sick that made him protest returning to his room. I am learning that three-year-olds, sick and well, crave control of their situations, need boundaries to feel safe in their worlds, require the comfort and security of their parents’ arms to navigate new feelings and experiences. Of course, it’s different parenting a child in the hospital, but there is an odd comfort in knowing that my son was kind of a normal kid in some ways—as normal as my quirky offspring can be anyway.

With this knowledge, I don’t mind hearing my daughter proclaim that not only is she not her name, but that she is also not a child, my daughter, a baby, a dinosaur, a dragon, a cat, or funny. And while her emotional meltdowns make me sad for her, I don’t panic when she loses control. I just sit on the floor, open my arms, and let her collapse into me like he did so many times. I am her home base as I was his. She fits, not exactly where he did, but similarly, perfectly.

But what is different is that she is healthy. This year has meant preschool, something Caemon never fully experienced. And with preschool has come preschool colds—seemingly one after another. She has had some fevers. She has spent days wanting nothing but to curl herself up in my arms. The difference is that so far (and you know I have to say that), she recovers without incident. Her coughs fade away. Her ears remain clear. She bounces back and shows me time and again what a healthy child’s immune system is meant to do. Every time, I marvel, and every time, I also grasp just how sick he was for so long.

Of course, the differences span far beyond her health as we enter these unfamiliar months while she continues to grow and develop and learn. My daughter sings “Rudolph the Red-Nosed Reindeer” and dances her own made up “dragon dance.” She is obsessed with dinosaurs and horses, and she plays with toys and (usually) not medical supplies. She stomps in puddles and dresses in costumes and loves to get messy. She is making friends who are children (without one nurse or syringe pump among them), is on her first winter break, had her first holiday performance at school. And like most little sisters, she looks up to her big brother, tries to emulate him through her interpretation of who he was. Each day of her  1,250 on this planet thus far, she has reminded me that she is her own person and always will be. There is no danger of her taking on the role of replacement child, and as each day passes, I believe I may very well see her grow up.

My son’s favorite song in his final five months was a Jack Jonson song called “Supposed to Be.” Every time it came on, he wanted me to hold him, dance him, and as I did, he listened to every word, every note so intently. The lyrics were simple:

Maybe it’s up with the stars
Maybe it’s under the sea
Maybe it’s not very far
Maybe this is how it’s supposed to be
Maybe this is how it’s supposed to be

Maybe it’s trapped in a jar
Something we’ve already seen
Maybe it’s nowhere at all
Maybe this is how it’s supposed to be
Maybe this is how it’s supposed to be

Looking forward as we rewind
Looking back is a trap sometimes
Being here is so easy to do

If you want to…

We would play this song often in the hospital, and as I held Caemon, his tubes draped across my arms, his arms wrapped around my neck, my lips resting on his sticky, bald head, I would listen carefully too, terrified that this was, indeed, how it was supposed to be.

My daughter does not want to hear this song. She does not want me to play it and begs me to stop it when it comes on. It makes her sleepy, and because of this, as she so very sternly asserts through her three-year-old logic, it is not a good song. I don’t have to play it to hear it though. All of those replays in the hospital have it indelibly loaded onto the Caemon playlist in my mind. And these days, as I observe her surpassing her brother in so many ways, as I see her three-years-and-five-months healthy and three-years-and-five-months strong, and as I miss her three-year-and-five-month-old brother, this song wafts through my head and slow dances across my heart, a bittersweet message from beyond.

Yes, maybe this is how it’s supposed to be.

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.

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

 

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.

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 haircut 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 himself. 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 about 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.

*****************

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

 

 

The Caemon Marston-Simmons Hero Fund

Today is Giving Tuesday, a day amidst all of the holiday bustle when people worldwide find ways to give of themselves. So today, we would like to share with you a way that we have been honoring Caemon, a way we can all give in Caemon’s memory.

Just a few months after Caemon died in 2013, I got in touch with a representative from St. Baldrick’s, an organization whose sole purpose is to fund pediatric cancer research, and I spoke with them about ways in which we could honor our son, one of which was a Hero Fund that would be directed to JMML research. In June of that year, Jodi shaved her head at our first St. Baldrick’s fundraiser, organized by Caemon’s uncle. A year later, we did it again, and this time one of Caemon’s oncologists joined us. With that fundraiser, we finally had enough to start our fund.

Today, we would like to unveil to you the Caemon Marston-Simmons Hero Fund. Caemon’s fund will provide grants specifically for JMML researchers as they continue to try to understand this disease. It is yet another way for Caemon to continue to make a difference, another way for him to live on.

But why should you give to St. Baldrick’s on Giving Tuesday? For us, this is personal in so many ways. You see, that same oncologist who shaved his head at our event last summer is also making some truly groundbreaking discoveries using Caemon’s own cells. You can read an article about the important work he is doing here: Rare Childhood Leukemia Reveals Surprising Genetic Secrets (note that the boy mentioned in the end of the article is, in fact, Caemon). His research is funded in large part by St. Baldrick’s grants, and his research is inspired in so many ways by our son. St. Baldrick’s continues to seek out the best researchers in pediatric oncology to ensure they have at least some of the funding they need to understand pediatric cancers.

We want to see an end to JMML–to all childhood cancers. We want these kids to have a greater chance at survival, and we know that supporting St. Baldrick’s is one way we can help ensure that happens. Please join us today in giving to St. Baldricks. Help us grow Caemon’s Hero Fund, and help us support these researchers who want to put an end to this disease.

Thank you!

The Marston-Simmons Family

 

welcome back

A few months ago, I started attending a prenatal yoga class one evening a week. It’s a different kind of class in that we share tea and conversation following our yoga practice, and much of the conversation, as one might imagine, revolves around pregnancy, child-rearing, and general mom concerns. It’s a lovely time for these women to connect with others who are facing similar experiences, whether first-time motherhood or negotiating the waters of second/third-time parenting.

In the first class I attended, I did share that I had a child who died. It seemed appropriate because we were asked to share whether we had other children, but I didn’t say more about it. At the next class, over twice as many women attended, and I chose not to share my story. I didn’t pretend to be a first-time mom, but I didn’t bring up my son dying of leukemia either. So when it came time for our tea and conversation following the class, and a woman was struggling with getting her nearly-three-year-old son to sleep, I wasn’t sure what to do. I had advice, experiences to share, and I wasn’t sure whether to share them as though I had a living child or to stay quiet lest I bring up my son who died and inadvertently shift the focus to myself. I sat and nodded in recognition of her plight, and eventually, our teacher noticed and said, “Timaree, it looks like you know something about this.” It was an invitation. I shared from the experience I had of a child who preferred not to sleep, all while staying focused on the mom, avoiding my own story, pretending if for a few minutes to be one of these second-time moms, even though it felt a bit foreign.

At the end of class, the teacher spoke with me, thanked me for joining in the conversation and sharing my bits of wisdom. I told her that it had been a long time since I had sat in a group of moms talking as a mom, that it was nice to share. She placed her hand on my shoulder, looked warmly into my eyes, and said, “Welcome back.”

Every time I think of that moment, I tear up. Since Caemon died, Jodi and I have wanted to “get back” to parenting. We were just getting started when he got sick, just finding our groove. We loved being the moms of a curious little boy; it was such a singular joy, our primary focus. When he died, not only did we lose our beloved son, but we also lost this enormous piece of our identities. People reassured us we were still mothers, and in our hearts, we felt we were, but we didn’t live the lives of mothers. We haven’t for two years and five months. There have been no bedtimes to negotiate, no meals picked over by four- or five-year-old hands, no loads of small clothes to wash or toys to put away, no scraped elbows to kiss or hurt feelings to hug away. Mothering Caemon has turned to remembering, longing, grieving.

Here we are, though, less than a month away from meeting Caemon’s little sister, and all signs point to us getting back to parenting. But what does that mean for us? We won’t be starting again where left off—and I think for a long time that’s what “getting back” to it meant for us: reading the books we had just discovered with Caemon, repeating our favorite family inside jokes, making muffins on a lazy Sunday while our son tried to lick up all the batter; it meant getting back to mothering the boy we knew so well. It has taken months for me to grasp that getting back to it is really starting over—starting with a whole new little person, a whole new perspective of parenting, and in that, there is both joy and grief, anticipation of the new and longing for the familiar—always this duality of emotions.

As this pregnancy has progressed, I have met other expectant parents—some of them first time moms, some experienced parents with small children to consider—and I simultaneously identify with both sets and none of them at all. I have all the “luxuries” of being pregnant and preparing for a newborn without parenting another child. My wife and I can spend quality adult time together, I can nap whenever I like, I can be as lazy or as productive as I like because I don’t have a living child to consider. But because I am not a first-time parent, I have the wisdom of experience, the serenity of knowing I don’t have to worry about swings and bottle warmers and having the perfect nursery, of knowing that birth doesn’t have to be scary, and more importantly, that we can do this.

Then there is the other side of it all. We have hand-me-downs from big brother–toys, clothes, his precious books—without the big brother attached. There will be no wondering where Caemon should spend the night while we are at the hospital, no first meeting of brother and sister, no little boy jealous of the time his moms spend with the new baby, no watching two siblings loving each other as only siblings do. Coupled with that I have so many of the fears of a second-time mom: the guilt of giving my thoughts and love over to another child, of feeling like I’m somehow neglecting my first child for the other—of forgetting the little details about my son: how he smelled, how his cheek felt under my lips when I kissed him good night, how his laughter rang throughout our home. I worry I won’t love my daughter enough, that she won’t know the best of me, that she’ll always be trying to access that part of me who died with Caemon.

I suppose some of my worries aren’t unlike those of second-time parents at all; I just happen to parent a first child who no longer walks this earth. He was my first love as a mom, and he always will be. Certainly I will love his little sister. Certainly I will continue to love him.

I am not getting back to the parenting I once knew, but I am rejoining the world of mothers of living children. I am growing a little girl in my belly who is likely to split my heart wide open again, who will remind me of her brother in some ways and in most ways will be her very own being. I am soon to meet this soul who will indeed welcome me back to the most treasured role I have ever held. I have her brother to thank for showing me the world through a mother’s heart; I have her to thank for bringing me home again.

Thirty Days of Caemon–Day 26: Caemon and Carol

Today’s post comes from our very dear friend Carol. She was a special friend to Caemon and an incredible support to Jodi and I both in the hospital and after Caemon died. Her presence during Caemon’s treatment and her countless efforts to help support our family in innumerable ways during the course of Caemon’s treatment will always be a treasured gift to us. Below, our beloved friend shares Caemon’s impacts on her.

~~~

I met Caemon before he was born – really, before he even was conceived. Jodi and Timaree wanted so much to be parents, were so sure that this was their path, and so dedicated to making it happen. Their child was a tangible presence before he arrived on Earth.

I was overwhelmed with joy when they shared their news. Timaree was pregnant and the embodiment of Mother, and Jodi equally diligent and dedicated to being Mama. I remember the day they showed me his room, which also revealed his name and its meaning. C A E M O N was spelled out in colorful wooden letters, and a large stuffed crocodile was waiting for him.

When he was born, I visited them at the hospital and got to hold him when he was barely 24 hours old. I never dreamed that just three years later the four of us would again be sitting together in a hospital room.

I  am one of the lucky ones that knew Caemon. I have more treasured memories than I can list here: making cakes for all three of his birthdays; walking along with him in a stroller sucking my finger when he was teething; playing in his room on what turned out to be his last day at home; sharing a special crystal just before his transplant; a magical connection while napping with him just days before he died.  The last treats I baked for him were cream cheese brownies. He loved them. I promised to make them again when he finished his treatment and felt well enough to eat.

When Caemon was diagnosed with JMML, I knew I would be showing up in some big way for this journey. I was so grateful to be able to help: I created his Facebook page, did fundraising, and spent time at the hospital for several hours every week. Those visits were precious and also could be very intense. While I found myself rising to the challenge of this, I was astounded at what I witnessed in Timaree and Jodi. My experience was the tiniest sliver of what they were going through. I am still in awe of the tremendous love that fueled them through more trials on every level than I can begin to describe or imagine. To be able to give even a small amount of support was humbling. They are a testament to the power of unwavering love.

I received so much during this time. Not only from Jodi, Timaree, and Caemon, but from new friendships, relationships that deepened, and the experience of spectacular loving kindness that flowed with beauty and force from all directions. People are capable of such extraordinary love and generosity, and it seems we are just waiting for an opportunity to show that.

My spiritual beliefs include the idea that the Universe has a bigger plan, that we are all connected, and that no matter what happens, there is purpose and choice.  Caemon’s illness and death tested me. I was furious when he died. Why did he have to suffer so much and die so young? Why was his incredible potential snuffed out? Why did his parents, who wanted him more than can be measured and did everything to deserve a happy ending, have to endure this grief? It was so incredibly unfair. But in the end, I still believe in a loving Source and a choice made by our souls as part of a much bigger picture than this one life on Earth. It doesn’t make his absence less painful. But I know that Caemon’s soul still shines, that his short life had and continues to have a great impact on so many, and that because of what happened, more people were transformed without ever meeting him than maybe would have been had he lived much longer. This helps give me perspective and some peace.  In spite of how I still feel about this outcome, my love for and trust in something bigger than us remains strong. The incredible courage of his soul to come to Earth, knowing what was in store, tells me he knew it was worth it. Yes, I wish Caemon were still here. I wish I were making him birthday cakes and cream cheese brownies. I wish his moms didn’t have to live with this gaping hole in their hearts. And I also know his life had a purpose that continues to unfold through his soul, his legacy, and through those of us who are better for having been touched by him.

Recently I had a dream about Caemon. I was in the bottom part of a split-level room, and he came over to me. It felt so lovely to hold him. He spoke to me in a child’s voice that gradually became more articulate and mature. While I don’t remember his words, the memory in my body is of wisdom and comfort.

And then he had to go. He climbed up to the level above me and scampered off with a couple of other children. In my dream, I was okay with that.

Thirty Days of Caemon–Day 25: B is for Books

Today, Jodi and I ventured over the Golden Gate Bridge and through the streets of San Francisco to the new UCSF Benioff Children’s Hospital. Our first visit to the hospital’s new location would bring us hugs and conversation with some of our favorite of Caemon’s caregivers, reconnection with our UCSF family. However, this was not our sole purpose for visiting. Today marked the delivery of our annual C is for Crocodile book drive donations.

In five large tubs, we packed over 350 books for children from babies on up to young adults. These books, sent to us by our generous community, will be distributed today to children on the pediatric oncology floor at the hospital.

Delivering the books.

The idea for this book drive was born in the early days after Caemon’s death. We wanted a means of honoring our son while giving back to kids like him. While we had seen many, many gifts of toys  and hats and bears and more during his stay in the hospital, we didn’t see many new books, and Caemon loved books. With two English teachers for mothers, I suppose that is no surprise, but he was enamored of his stories. He would often make stacks of books for us to read, and we would sit on the floor of his room reading together until we made it to the bottom. Our moments reading to Caemon were some of our most precious, and reading to him in the hospital brought us a little taste of home and familiarity. For these reasons and more, we decided to hold an annual book drive in Caemon’s honor, and I can say it is my favorite thing we have done in his name. Not only are we able to celebrate one of our son’s greatest loves (and ours too), but we can use this as a regular connection and expression of gratitude to our UCSF family. Beyond this, the book drive gives our community a way to connect, to give in a very real way to patients just like Caemon.

This past year, my dedication to this effort was renewed when I received an email from the mother of a patient at UCSF. This little girl had received one of our book donations, and it had helped her through a difficult time in the hospital. It was easy to see myself in this mother, to see my son in her beautiful bald daughter bravely battling leukemia. The message brought me to tears, for this one little book had done just what we had hoped: it brightened the day of a family going through the scariest time imaginable; it provided them a little respite from their lives on the front lines, a reminder of the basic routines of families of small children. Since that first message, we have kept in contact with this mom, following her daughter’s progress, cheering them on as this beautiful girl progresses through her treatment. And this year, as our book drive got underway, we received a big package from this family: they made their own donation of some favorite books of theirs, bringing the giving full circle.

Today, as we dropped off our big bins of books, it was hard not to imagine how much Caemon would have enjoyed this process, that he would have loved seeing his old UCSF friends and gifting them boxes and boxes of books. Instead, we pass on the gift of one of Caemon’s greatest loves and take some joy in knowing our boy would most certainly approve.

Thirty Days of Caemon–Day 23: C is for Community

Before Caemon’s diagnosis, our little family’s community circle was fairly small. We had close family, a few new friends and colleagues, and a number of friends hours away. As fairly recent transplants to our city, we were still finding our tribe. When Caemon’s illness hit and we learned how very sick he was, we were certain that it was going to sink us. We had health insurance, but this meant Jodi had to continue working, and it wasn’t going to cover everything. We didn’t know how we would keep our residence, how we would afford traveling to and from the city, eating out for every meal, managing all the daily expenses of living in the hospital. But more than that, we didn’t know how we would make it through emotionally. How does one handle day after day in the hospital, the very lonely road of being a parent of a child with cancer?

Within just a day or two of his diagnosis, all of these uncertainties were put to rest.

On the first day of Caemon’s diagnosis, my sister started us a Caring Bridge site, and our friend Carol set up our Facebook presence “Caring for Caemon.” We shared the news with family, with friends from our moms’ group, even with my mom blogger community, and suddenly offers for help and messages of support were overflowing our inboxes and phones. A blogger friend took over my blog for a time, leaving announcements there. She communicated with my sister who communicated with Carol, and they all coordinated to set up fundraising and news dissemination and support. Our moms’ group made up a schedule for caring for our house and cats, and just like that, we had little to worry about but our son.

And for nearly six months, that community support just kept growing. Our neighbors kept our yard up. The circle of moms did our laundry, cleaned our house, cared for our cats. Blogger friends started a t-shirt fundraiser. Carol put together a wine country gift basket raffle. The moms organized a huge event, raising money and celebrating us. Donations came in daily to help us stay afloat such that I was able to take leave from work. Messages of support from family, friends, and strangers popped up in our inboxes on Facebook. A few people set up regular visits to keep us company, to give us respite. An engine company from the San Francisco Fire Department, one of whom is a close friend of my brother’s, came to see Caemon with gifts and donations and words of encouragement. Our local fire department dropped off presents, even brought their engines over for Caemon’s third—and last—birthday celebration.

To list every kind thing that happened to us just in that first ten days of learning our son had a life-threatening disease could take me days. To list the acts of kindness and compassion that came in the coming months, even in the last two years, would take weeks, months. The picture is clear though: from our son’s illness, a community of compassion sprung up, and it grew, and it grew.

To say that this has been humbling is an understatement. I never imagined that over a thousand people would subscribe to a blog about my son, that over two thousand people would follow a Facebook page dedicated to him. And I never imagined what those people—most of whom I’ve never met—might do. From buying t-shirts and making donations to help us out to posting photographs of appliances and lit candles and sunrises to keep our spirits up, sending words of hope and inspiration, and later, when Caemon died, message after message after message of heartbreak and condolence. Members of our community helped our Leukemia and Lymphoma Society Light the Night team raise thousands of dollars and continue to donate to our St. Baldrick’s fundraising efforts; they have donated hundreds of books to our C is for Crocodile book drive; they have given blood and signed up to be bone marrow donors. At least one member of our community has become a bone marrow donor. Our community raised money for a bench for Caemon, and that same community sends photos of their children visiting the bench. This community wears their “Taking a CHOMP out of leukemia” shirts with pride and meet one another in unexpected places—as far away as Brooklyn.

And our community has come together to help other families fighting the battle with pediatric cancer, making donations, offering support, spreading compassion.

And do you know, our community continues to grow? New people join the Facebook page every week. New people follow the blog every day—people who learn of Caemon’s story and go on to think a little differently about their own lives and what they bring to the world, people who remember our golden-haired boy and keep his legacy alive in so many ways.

This community with its remarkable wingspan has held our family up during the most difficult time in our lives, and it just continues to give and give and give. For our little boy with his tight circle of friends and family to draw thousands of people together for good is nothing short of beautiful, and a simple “thank you” will never be enough to express the gratitude we feel for all of you who are the living, breathing envoys of Caemon’s legacy.