opening day

Grief season began today. Every year as I spy August around the corner, and people start talking about kids going back to school, I start to feel incredibly uneasy. And before I know it, there it is on the calendar: August 20th, the day the crack in the ice opened up, the day the oxygen left the atmosphere, the day I learned the monster under the bed was real.

The months between August 20th and February 5th are filled with daily reminders of Caemon’s treatment. I obviously think of him in the “off” months. I grieve him openly and heartily. But August through February are peppered with memories of some of the most terrifying moments of my life, all culminating in the nightmare of losing my son.

Today, it has been six years since I rode for the first time in the back of the ambulance, my son strapped into his car seat, strapped to a gurney. Six years on, it is hard to know what to do with a day like today. I am careful these days not to relive too much of the trauma. I don’t need to sit in the moments when I was shaking so hard I couldn’t sign my name or shivering in the sweltering August heat because I was in shock. I don’t have to feel the trauma of holding him down for his first IV or the world going dark when I first heard the word leukemia. I know that I don’t have to relive the worst days of my life to see that they are there, but as this year’s grief season begins, I’m a fool to think I can avoid them entirely.

I know so many families now, so many families who have lost children to cancer, families who endured years of treatment, families for whom the entire year is filled with traumatic date after traumatic date. In this way I am lucky if there is luck to be found in losing my son. My dates are condensed, cooked down into the most concentrated and potent five and a half months imaginable. Much like Caemon’s disease. Much like Caemon’s life.

Grief season is upon me. My birthday comes soon. Then four short days after, Caemon’s birthday. There’s the day he first went back to the hospital, then Halloween, when we had to return early again. The last trip home in early December, then Winter Solstice and and bone marrow transplant and Christmas. And there is relapse, and there is his death day, and then it’s done. Grief season is over, just like that, and before I know it, I have memories free of hospitals. I have hikes in the redwoods and trips to the beach with my boy, whimsical weekends in hotel rooms, or days at home, walking to the park to swing. I ache for my son just as much during these days, but the off season is lighter, less shrouded. I can breathe.

But grief season is here with its dark, heavy cloak, and tonight, as I sat with the heaviness of that familiar garb, I lit a candle in front of Caemon’s photo.  I touched his face. I spoke with him. I wished so hard that I knew what he would be like now. I apologized to him that I couldn’t save him, and then I walked away for a moment. I wandered my house looking for something to hold, feeling my arms were empty. I scanned the room looking for something of him to hold. I walked into my room, earnestly searching, for what, I did not know. But my son was not to be found. His ashes rest in his box on the mantle, but this box, the crocodiles, even his favorite teddy bear, none of it were what my arms craved. I panicked for a moment. What could I hold? Finally, I stopped. I stood again, staring at his photo, held my arms out as if to welcome his embrace, pulled them back to my chest, empty, and wept.

Image courtesy of In Her Image Photography

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.

once and future mothers

A month or so ago, a very generous new friend of ours bought us tickets to a music festival nearby where we would be able to see some of our favorite artists. It wasn’t until a few weeks ago that I even realized it was going to be on Mother’s Day. Soon after Caemon died, I found myself thinking about all the holidays we would be celebrating without him, all those days I once enjoyed I was suddenly dreading. Somehow, I forgot about Mother’s Day. On the long road it took for Jodi and I to become mothers we dreaded Mother’s day. For a couple of years, this holiday was a painful one, for we so longed to join this exclusive club of moms with little ones in tow. In subsequent years, having my baby boy in my arms or a toddler on my hip proved good salve for that old self as I easily immersed myself in being Caemon’s mom. Now with Mother’s Day just a couple of days away, I find myself once again without a child, longing to be a mom, longing especially for my boy.

Last year for Mother’s Day, Jodi took Caemon to the drug store to find me a card and a gift. Caemon apparently strayed from the selection of Mother’s Day cards fairly quickly. Instead, he found a card with a drawing of a smiling woman on the front. It was a thank you card. It was perfect, the best card I have ever received. A few days earlier, he and I had sat at our kitchen table and used one of his favorite machines, our label maker, and we made Jodi a special card, complete with a picture of him on the front. We used glue sticks, cut out bits of paper, pulled out some fun stickers. While Jodi and I so delighted in receiving cards that involved his very own decision-making, even better was teaching Caemon the art of giving, seeing his smile filled with pride that he had done something for us. We didn’t need to teach him to appreciate his moms. That was something he did all on his own. The joy and pride we both felt in being Caemon’s moms and in imagining our future together as a family erased any sadness we may have once felt about Mother’s Day. But without him, that old familiar not-a-mom status has returned with a vengeance, and it’s no secret that I hate it.

People often assure Jodi and I that we are still mothers even without a child. I absolutely feel like a mother; there is no losing that. However, the work of mothering is no longer part of our lives. Children of friends and family look at me suspiciously when I reach out to touch their sweet little toes or their soft hair. They reach eagerly for their parents if I try to embrace them, quickly wriggle free if I try to pick them up. And they should. I’m not their parent, not their mom, and as far as many of them can see, I’m not a mom at all. If they do reach out for me, if they do offer hugs, it’s not the hug a child gives a mom; it’s the more trepidatious hug reserved for aunts and parents’ friends because, quite simply, I’m not their mom. I’m Aunt Timi, their mom’s friend, a stranger smiling at them in a store, the weird woman in the elevator who compliments a toy or a book they might be holding, the sad woman who always seems to be crying.

People say we’re still moms, but we don’t act like moms. We do the sorts of things couples without children do.  Jodi and I freely visit restaurants at any time without the slightest concern for how our child will behave. We catch movies or read books, even sleep in late. We drink whenever we want, as much as we want. We  place sharp objects within reach, leave candles burning on low surfaces. We get ready to go places in a short time, and we arrive clean, not disheveled, and without a babysitter to call. I know how this sounds. These are all the things we used to pine for as parents, the stuff of dreams when one is mired in the work of parenting small children. This sort of freedom is foreign to parents, but to have such independence to do what we want whenever we want with no reprieve–to never be called back to duty–is awful.

Last weekend, we were dining with extended family, and my niece wanted a smoothie. On the menu were mango, banana, strawberry, and other fruits, but when she heard the word “banana,” she thought she heard “vanilla” and thus immediately had her mind set on a vanilla smoothie. When her parents told her they had banana rather than vanilla, she was quite disappointed, so I motioned to the server who was taking our drink orders and whispered to her, “In a moment, I’m going to order a vanilla smoothie. You’re going to write down banana smoothie, but we’re going to call it vanilla.” She smiled, and I informed her in a voice loud enough for my niece to hear that the young lady would be having a vanilla smoothie. My niece beamed, couldn’t believe that I had somehow ordered her something special, and the other adults at the table breathed a sigh of relief that the impending meltdown had been averted. That moment felt good. It felt good until I realized that it’s because I was once a mother who had to trick her son into eating foods he didn’t want to eat from the hospital menu by calling them by more appealing names. I was once a mother.

Being a mom was the best thing I’ve ever done. I loved it all, even the hard parts. Every sleepless night was worth the feeling of Caemon’s little arms around my neck, the feel of his sweet little kisses on my cheek, the warmth of his head resting against my chest, the radiant smile he offered me when I came home from running some errands, the sweet scent of the nape of his neck. I miss every moment, even the tantrums, the unwillingness to eat what I’ve cooked, the screaming in public because even though those behaviors may have been challenging, they were the challenges of living and growing and learning to be in the world. So long as we had those challenges, Caemon was a thriving boy, and Jodi and I were his  moms. Without the challenges and the triumphs of the daily mothering of our boy, I don’t know what we are. We’re not actively mothers right now, but we’re not not mothers. That there is no word for what we are says something about the unspeakable nature of losing one’s child and the particular grief of losing one’s only child. It is unspeakable, unthinkable. There quite literally are no words.

As people who spend a lot of their lives thinking about words and language, we have naturally discussed this horrible limbo with friends. A few hours after one such conversation, my friend texted me with this suggestion: “How about, ‘once and future mothers’?” Yes. Yes, I suppose that’s us.

We do pine for another child to parent, and we will have one–we will be mothers again. I don’t know what that will look like; it’s hard to see much of anything from this in-between world filled with longing and sorrow for my only son, but children have a way of illuminating even the darkest of places. Last week as I held my newest baby niece for the first time, I caught a glimpse of that–that healing capacity with which babies are born. When we went to a bereaved family camp a couple of weeks ago, we met another two-mom family who had lost their first child fifteen years ago. They had two more children after that child died, two beautiful, sweet, kind, healthy children whose daily lives have included their moms’ memories of their older sister–a sister they seem to know. The children hadn’t taken away the pain of losing their first child, but they had brought their parents the joy that accompanies children. Jodi and I could easily see ourselves in these moms’ shoes: future mothers.

Being Caemon’s mom was the best thing I’ve ever done, and now that I can’t mother him, I often feel I’m walking around in ill-fitting clothes, sleeping in the wrong house, driving the wrong car, living the wrong life. I’m living the once-a-mother life waiting for the universe to right itself again. I know I can’t have him back, and I know I’ll never be the same, but sometimes the idea of future motherhood is just enough to keep me going.

J3 J7

Images courtesy of In Her Image Photography.