Tag Archives: Caemon’s Legacy

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.

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.

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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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The Caemon Marston-Simmons Hero Fund

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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.

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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.

Croc snuggling with our special friend, Carol.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 IMG_0073showing 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.

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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.

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

CaemonCroc2Before 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.