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.

Thirty Days of Caemon–Day Fourteen: I’ve Got You

When Caemon was diagnosed with leukemia, we entered a world that felt so isolated. Of course, we were isolated. We were in the hospital on literal “isolation precautions” because he had a cold and because he was so very sick. And even though we had family and friends coming together to help us in any way that they could, we had entered a world that no one else we knew had entered, that dreadful club of pediatric cancer moms.

I’ll be honest: initially, I avoided all of the other parents in the hallways at the hospital. I didn’t accept that we belonged there or that I was truly one of them. In mind, I was still convinced that all of this was going to turn out to be a big mistake, that he was going to have some strange virus, and before we knew it, we would be on our way, marveling at what a close call we had had. But it wasn’t a close call; there was no mistake. Our son had cancer, and we had overnight become cancer moms.

In those early days—all through his treatment, in fact—I’m ashamed to say that I did not want to hear from parents whose kids had died. I didn’t want to be reminded of my own child’s horrible odds, odds that we weren’t talking about, but it was unavoidable. A certain sign would appear on children’s doors when they were dying or had died. “Code whites” were called when kids stopped breathing, or worse. Reminders of our son’s mortality were all around us.

People asked if I had read the blogs out there, the other cancer mom blogs. Some nurses warned me against it, that getting into the headspaces these other parents had could be really detrimental to our desire to be positive. I did avoid them for the most part, and then, as I kept writing to update people on Caemon’s status, I realized that I needed to write a blog that wouldn’t be so scary to find, that other parents might actually benefit from reading, and that is where all of this was born. What I couldn’t have known was that this little bit of effort would prove to be a great connecting force to other cancer parents, and later, to other bereaved families as well.

It wasn’t long after Caemon died that we started receiving the occasional message from a family whose child was recently diagnosed with JMML. In those early days, it was hard to know how to be there for anyone who was just starting this journey, particularly when our child had had the worst possible outcome, but I sent resources, talked with parents over email, even sent a few care packages to parents in the hospital. It became evident in those moments that I had something to offer and that it felt good to give to parents who were in this horrible place we had been. It pulled me out of my own agony for a short time, and any reprieve from that was welcome.

A few months after Caemon died, I learned that the son of a doula classmate of mine had been diagnosed with leukemia, and he was being treated at UCSF. I reached out to her, not sure if she would want to hear from me given my son’s outcome but also knowing that there was no other choice. When someone’s child gets cancer, the worst thing to do is remain silent—but we also knew the ins and outs there. We knew that if she wanted the support, we could help. We made trips to meet her outside of the hospital (it was still too fresh to go inside), and we brought little care packages, bought her coffee, and mostly, we sat and talked, listened to what was happening, offered tips on how to make life a little easier. As hard as it was for us, and as hard as it must have been for her to face two moms whose own boy had died of leukemia, an important friendship was forged, one that would be even more vital as her own son relapsed and then passed away a few months ago. She told us a few times throughout the course of her son’s treatment and as he was dying that she looked at us with hope, that in seeing us alive in the world without our son, she knew she too would be able to live on without her son. And while she has her own path to walk through her grief, I see her doing it. I see her finding life through the anguish of her lost boy.

The number of bereaved parents who have contacted me, who have taken solace in my blog or in our direct communications is sort of surprising to me now. It’s not that I have any profound wisdom to offer them. I don’t know what it’s like to lose a baby just after he’s born. I don’t know what it’s like to lose a twenty-year-old child to suicide. I don’t know what it’s like to have a child die suddenly and unexpectedly, but I do know grief and how it festers and how, like a persistent toddler, it demands to be acknowledged. I know how crippling it is to live without one’s child, how desperate one feels to simply know where that child is. I know how desperately bereaved parents need to be seen, how their children need to be remembered, and how, more than anything, they just need people to be there, even without the “right” words to say.

I never imagined that this would be a part of Caemon’s legacy, that part of my dedication to honoring him would include honoring all the children I know of who have died while becoming a listening ear for their parents. But it also makes sense.

In the last eight months or so of his life, Caemon, when seeing me sad, would say, “Mommy’s sad. Come here, Mommy. I will comfort you.” He would hug me, pat my back with his little hand, sometimes even hold onto both sides of my face. “I’ve got you, Mommy,” he would say. That little nurturing soul always made me feel better.

So I guess when I reach out to these parents, when I respond to their calls for help, I’m doing a little of the same. I’m letting them know, I’ve got you. I’ll be here. Because childhood cancer and bereaved parenthood are dark, lonely places, and if I can lend a light or a hug or a listening ear, it’s what I’ve got to do. No one should walk these paths alone.

Caemon comforting a delicious (but sad) pumpkin muffin he made
Caemon comforting a delicious (but sad) pumpkin muffin he made

the boy and the turtle

I rarely dream about my son. I know people who regularly dream of their departed loved ones only to awaken disappointed, even devastated, that they were dreaming. I don’t typically dream about Caemon though. Oh, but I try. Most nights as I’m falling asleep, I ask to dream of him. I ask him to talk with me in his dreams. Sometimes I beg. Typically, however, my dreams are the sorting-out-my-day variety, and rarely do they contain even a glimpse of my precious boy.

Needless to say, I was surprised when a few weeks ago, I had a very vivid dream featuring Caemon. It was the sort of dream from which I did not want to awaken.

It all started with me seeing Caemon on a bus. It was a crowded city bus, in a city not unlike San Francisco. I could see him sitting in a seat, gazing intently forward with a serious and slightly worried expression on his face. His brow was furrowed. He was traveling alone, but there were many other passengers on the bus. He was older, taller, maybe about five. He had his glorious blonde hair. I knew he was going to some sort of music or art class in this unknown city where were apparently living.

As I watched my son leave on this bus, panic struck me. I was terrified. What had I done sending my small child away on a city bus without an adult? Why hadn’t I thought to take him to his class myself? How would he know where to go? How would I know if he arrived? What kind of mother was I? I spent some time in this agonizing state before the dream jumped into the next day. My son was there, and I had opted to accompany him on his bus trip.

When we exited the bus at its destination, we were in a strange industrial area with vacant lots, warehouses, and construction equipment. It was eerie, quiet. Caemon held my hand as we walked through this space for what seemed like miles, and I wondered again how he had known where to go and why I would have let him travel like this on his own. Soon, we had left the industrial area, and we were on a quaint street with a variety of storefronts. Caemon entered one of these, taking me with him. We ascended some stairs, and I remember dark woods, jewel toned cushions, and a lovely homey feeling. We seemed to have entered what was Caemon’s school, and he was showing me around, pointing things out.

The last bit I remember is that Caemon stopped to show me a plush turtle. He picked it up and told me, “This is the turtle I tell me feelings to.” I was utterly touched. He was worried that if he were to go somewhere else, he wouldn’t have the turtle. I was so comforted that he had such a lovely place to be and even felt reassured that I had let him travel on his own because he was a bigger boy, and he could handle it. And he had this lovely feelings turtle.

I woke up at the end of the turtle scene, and there was that feeling I had heard about: utter disappointment that I had been dreaming. But there was another feeling lingering too, a feeling of dread of panic. It stuck with me the entire day.

I had let my son go off on his own. I watched him go. I let him go.

One doesn’t need a psychology degree to see where my unconscious was going with this, and this strange feeling lingered, this feeling of seeing him looking concerned and serious and noticeably older, this feeling of worry. And I think there is a part of me that feels like I really did see him.

In moments like this, I am always quick to mention that I am a skeptic. Perhaps I should call myself a hopeful skeptic. I want to believe that my son visited me in a dream. I want to believe he is communicating with me, telling me that while I had to let him go off on his own, where he has gone is pretty great, that he has navigated even scary industrial places just fine on his own, and, yes, I even want to believe there’s a stuffed turtle to whom he can tell his feelings. Such beliefs might be comforting.

I want to believe this because in all honesty, I don’t know where my son is.

I have so many different foundations of belief, but mostly, I feel like I simply lost him. There was this feeling of dread for months after he died that I had carelessly left him behind somewhere, that maybe he was riding some public bus with malicious strangers or wandering streets or sitting alone at a park. But I didn’t know. I knew where his body went, but I didn’t know where he went. That my psyche would try to grasp this in my sleep would be no surprise to me, but I still don’t know whether that is the whole story.

Anytime I remember this dream, I come back to this feeling, but I also come back to the turtle. A few days after I had the dream, I told my therapist about it. She smiled and thought maybe I needed to get a stuffed turtle. I agreed and then remembered that Caemon had one, one we had gotten for him at an aquarium when he was a baby. The turtle, while not a favorite of his “Fellas” (the name we all used for his stuffed creatures), came to his tea parties and participated in his “Ten in the Bed” game of throwing animals out of his bed at his moms. I was so comforted to remember the turtle. Maybe I would pull it out, share a few feelings with it. If anything, maybe it would help me remember the dream and what a five-year-old Caemon might look like.

About a week after I had the dream, Jodi and I went to visit a friend whose son Orion has leukemia (AML). He was being treated at UCSF, and we wanted to offer our friend some support after they had received some hard news. Her son was battling a rare infection, and the doctors weren’t sure he was going to be able to go to bone marrow transplant. When we arrived at the hospital, our friend let us know that Orion was up for visitors. We had yet to meet him, and had wanted to for some time, so we both took deep breaths, boarded the all-too familiar elevators up to 7-Long, and prepared to enter the floor where Caemon had lived for nearly six months. Soon, we were entering Orion’s room, which had been one of Caemon’s several rooms as well. And there was Orion, a lovely, bald, blue-eyed, six-foot-something boy. We chatted with him and his family for awhile. Sometimes I would just look at Orion, send him some love, and admire what a strong spirit he has. After some time, from under his blankets, this fifteen-year-old pulled a stuffed animal, and as he nestled it into his neck, my breath caught.

It was a turtle.

My head was swirling with Caemon and the dream and so many feelings. It took me some time to compose myself, but after a few minutes, I asked Orion about the turtle. A friend had given it to him. He found it comforting. As we spoke, he hugged the turtle to his neck, stroked it, rested his head on it when he felt tired.

I didn’t know what this meant. I still don’t. But I know Orion has a turtle, and I know it makes him feel better.

A week or more later, I received a message from Orion’s mom. She wrote that Orion had chosen to spend the rest of his days at home, such a courageous and beautiful and heartbreaking decision. His infection was preventing him from going to transplant. His leukemia wasn’t responding to chemotherapy. He just wanted time with his family and friends, time to be a kid before, in his words, he was to go back to nature.

My wife was not in the room when I received this news, but a few moments later, she appeared, and I told her. After a few moments of sitting with this, Jodi asked me, “Do you know what I was doing just now?”

As I had been reading the email, Jodi had been in the garage. She noticed that some boxes were piled on some of Caemon’s things, and she became upset by that, so began clearing them only to find his box of stuffed animals. When she opened the box, sitting on the top was the turtle. Just moments before she came downstairs and heard this news, she had pulled the turtle out, taken it to our room, and placed it on my pillow.

I know I wondered in that moment if Caemon was going to help, if he was here to meet a friend and usher him on to the next plane of existence. I won’t pretend to know what forces are at work here. I don’t know whether my son is hanging out with this other amazing cancer warrior or whether they just have a shared affinity for stuffed turtles. I don’t know if he’s trying to tell us he’s around, that he wants to help out, or whether I’m just looking for signs. I don’t know. All I know is that this happened and that I can’t stop thinking about it and that I cry tears of relief when I do.

Yesterday, I received in the mail a sweet plush turtle from a friend wish whom I shared this story. I held it in the crook of my neck. I thought of my son, and I thought of Orion, and my heart filled with love. I don’t need anymore meaning than that.

my golden-haired muse

Tomorrow, I am going to a conference for bloggers, a conference held by BlogHer*, a large blogging organization who chose to nominate me as one of its Voices of the Year for my post “I Had a Boy.” This is an unexpected and huge honor, something that has humbled me to my bones. But it has triggered unbelievably complex emotions too.

As writers, we all want our voices to be heard. As the mother of a child gone too soon, I have wanted so badly for his story to be read over and over by as many people as possible because if they do, he won’t be forgotten. But I can’t help but be saddened that for me to find my voice, my boy had to get sick. For me to gain this recognition, my boy had to die.

My wife is the first to remind me that I have been writing about Caemon since we started dreaming of having a child. I wrote about the long road to getting pregnant. I chronicled every joyful moment of my pregnancy with him. I wrote a three-installment, eight-page story of his birth. And once he was here, I wrote and wrote and wrote about the wonders and trials and triumphs of mothering a vibrant little crocodile.

And when he got sick, when our lives suddenly turned from trying to feed a picky two-year-old to consoling him through needle pokes and dressing changes, I took to writing through my fear, escaping the hospital through my words. When he died, this was sometimes the only place I felt I could turn to handle my grief, a way I could feel close to him and continue loving him because I have always, always written about my beloved son.

I think I have been surprised that through the terror of his illness and the agony of his death, I have done some of the best writing of my life–but I shouldn’t be. What I share on the page comes from the deepest of places. It is honest. It is raw. It is real. In fact, it is more honest and raw and real than anything I have written until now.

It is sacred.

I would never have chosen this path. I would give up every kind comment, every new reader, every mention on another webpage to have my son in my arms again, but that is not the road I am to take. I do, however, get to be a writer, and I get to share the most beautiful story, memories of a magical child gone too soon.

Tomorrow, I will go to this conference with my golden-haired muse tucked in my heart, and when I do, I will honor this precious gift he left me: a voice borne of hope and fear and love and heartbreak, the voice of a mother’s heart.



*If you are attending BlogHer, I will be part of a discussion at the WordPress booth on Saturday at 3:30. I would love to see you there.