the magic of 8

From a pretty young age, Caemon enjoyed counting. At first, like any child, he wasn’t entirely sure of the order of numbers, but we could get him to count to three or four, and by the time he was two and half, he was at least counting to ten on his own with relative ease, and if he was feeling cooperative, even higher. But then Caemon’s sense of humor kicked in, and his counting became less predictable. He would be counting along with something in a book, “1…2…3…4…” and somewhere in the sequence, a little glint would appear in his eye, and regardless of where he was in the counting, he would insert, “Eight!” and then dissolve into uncontrollable giggles. There were times when he would count all the way to ten only to jump back to eight.

The number eight quickly became his favorite. When asked his age, Caemon would occasionally reply that he was eight. When asked how many of something he wanted, his sly smile would creep across his face, and he would respond “Eight!” Eight was his go-to number. It was his running joke, particularly with me. He and I would count teaspoons of vanilla or cups of flour, or we would count for the sake of counting, and he would never count seriously (unless he thought I wasn’t paying attention). He always jumped to eight. It made me laugh every time. It made him giggle his infectious, beautiful giggle. It’s no surprise that I came to love the number eight too. Sometimes, when counting with others who didn’t know the joke, he would pull his usual trick, familiar glint in his eyes, and he would always look over at me to make sure I heard the joke, even if the person present wasn’t aware that he really did know how to count.

I will admit that when I count things now, I sometimes shout “Eight!” in my mind to conjure up that silly boy who loved so much to laugh, to make his moms laugh.

After Caemon died, Jodi and I received a number of books and pamphlets on grief, many of which suggested that in the early stages of the grieving process, the bereaved often look for signs of their deceased loved ones; I was no exception. Throughout many of those early days, I would find myself looking for signs of my son, messages he might have left. Unfortunately, I’m also an insufferable skeptic, so the search was often a little frustrating. The morning after Caemon died, I awoke to find a bright green syringe cap in my bed, one of Caemon’s favorite types of caps (he collected various caps in the hospital and knew what each cap belonged to). I tried to explain it away, but ultimately couldn’t. I didn’t know how it got there, so I let myself have that one. My boy must have left it. In the months following, I would find piles of dimes around the house. I don’t know why they were always dimes, but they were. Jodi thought he was leaving these for me, so I agreed to believe, all the while wondering why there were so many dimes and how a spirit would go about moving such things and whether I was just getting sloppy about putting away my change. But in my heart, I wanted them to be from him, so they were, and I left them in their places (after all, I wouldn’t want him to think I didn’t appreciate the occasional thirty or forty cents). There have been a multitude of other signs, some of which my doubtful mind has explained away, some of which I’m still trying to figure out.

It should come as no surprise then that my latest wave of “signs” has been a series of eights. On the anniversary of Caemon’s death—or perhaps the next day, I walked up to our front door to find a purple foam 8 on our welcome mat. It was the sort of foam sticker that Caemon loved IMG_9848crafting with at the hospital playroom, and while chances are it came in on the shoe of a friend whose kids had been working on similar crafts, I couldn’t help but hope Caemon had left it for me just hours after I had wished I could feel him close, had actually wished that he would give me some indication that he was around somewhere. I brought it in and put in on his altar, and it inadvertently became the first of a growing collection.

Most of the eights I encounter aren’t concrete. I will pull out a handful of pretzels, and there will be eight (Not a message from beyond, I will tell myself). I’ll watch Jeopardy, and the answer to a question will be eight. An important event will fall on the eighth of the month. These eights are not signs, not communications, but I notice them, and more often than not, they trigger a replay of my son counting, eyes glinting, and his sweet voice exclaiming his favorite number.

But there are some other tangible eights. My latest findings were on the beach on the Mendocino Coast. Jodi and I were vacationing there, doing some beachcombing and thinking a lot about our son. Caemon loved the beach. He loved “playing buckets,” watching the waves, getting his toes wet, digging them in the sand. And he also loved his special jar full of treasures we had found together at various beaches throughout his short life—shells, rocks, sand, tiny sand dollars, even leaves. He would empty the jar on his bedroom floor and handle each item one at a time and then place them gently back in his jar.

On this particular day, as Jodi and I were remembering these magical times we spent as a IMG_9849family, and I was letting the tears fall freely, I looked down at a small pile of stones and shells to find none other than a small white 8 formed from the calcified case of a tube worm. I picked it up, felt a warm feeling washIMG_9850 over me, and placed it in my pocket, but not before I showed it to my wife, who smiled and noted that Caemon was leaving me a lot of eights lately. Another wave came in, and we ran away and then back to find what the ocean had churned up this time. I looked down, and there again was an 8. I gently pocketed the second eight, my tears and the spray of the surf leaving my face a salty mess.

Honestly, I don’t know that my son’s spirit has any control over shells I find on a beach or foam numbers that appear on my doormat—certainly not over answers on Jeopardy. But I know that the number eight has somehow turned sacred to me. It’s the number of my boy’s laughter, the code to his mischievous grin, and turned on its side, it is the symbol of the connection he and I will always share. Some people think their loved ones are around when they see feathers, others butterflies or rainbows. And we do this too—we think of Caemon when we see crocodiles and bees and the color orange. But my son and I, we have a running joke, even in the afterlife, and that has everything to do with the magical number eight.

You can witness Caemon’s counting joke in the video below (around 1:40–note the little look he gives after). Here, he is “reading” There’s a Wocket in My Pocket by Dr. Seuss to our beloved social worker Peggy. This reveals another of my favorite habits of Caemon’s: his memorization of all of his favorite books and his insistence on reading them to his loved ones. This video was taken a few weeks following his transplant when he was finally starting to feel more like himself again–and just a short time before his relapse.

for the want of a child

People have been hesitant to ask, but they are curious: Do you think you’ll have another child? This may be the one area of my life where there is zero ambiguity. Yes. I can’t even imagine a meaningful life for myself absent children. Actually, I’m currently living that life, and it’s increasingly untenable. A well-meaning gentleman once advised me to use this time in my life to do something I’ve always wanted to do. It was a very masculine “seize the moment” sort of grief management. “I’ve always wanted to be a Mama.” I responded. It was my truth, spoken wistfully, honestly.

I have written many times that having a son made me outrageously happy, fulfilled, and hopeful, but he did not come to us quickly or easily; it took a lot of intention on our part to bring him here.  The void left by Caemon’s death is enormous, and I yearn for him constantly. I know and accept that he cannot be replaced, but my desire for a new baby is overwhelming. I want to be a mother again, to change diapers and tickle toes, sing songs and read Dr. Seuss books. I don’t need to run a marathon or hike scary mountains to prove that I am strong or that I fiercely love my fallen son. In fact, I don’t need to prove anything.

What I need is a healthy baby. I need a baby who will grow up, who will go to school, get crushes, learn to drive, graduate from high school, fall in love, have children, and not die until long after I am gone.

People have said, “But you have your teaching, and your students really value you,” or have questioned, “You don’t really think another baby will make everything better, do you?” I get it. I’m supposed to find meaning in other areas of my life and not place all my hopes and dreams on having a child. I’m supposed to “nurture myself” and reflect/meditate/grieve, etc. Here’s where I stand on that line of thought: Bullshit, okay. My students aren’t my children, not even close. Professional satisfaction does not translate to a wonderful personal life. And no, I don’t think having another child will make everything better, no more than I thought having a baby five years ago would make everything better, but I knew then, as I know now, that it does make many things better. Primarily, it makes me better.

Not everyone is destined to be a parent, and I hate that we still live in a culture where a woman’s worthiness is often linked directly to her status as a mother or not-a-mother. I know many people who have chosen not to have children of their own but remain devoted to the little ones in their lives. To be clear, I am not one of those people who are content being an auntie, honorary or otherwise. I have always wanted to be a Mama, a desire that solidified when Timaree and I moved in together and began discussing our dreams of family. I was anxious to get started right away, even though we were young, broke, and completely unprepared. Timaree wisely set a timeline of three years. That would give us time to graduate, establish our careers, and start a family. Three years turned to six, then nine, and despite years of dutifully treading water in the adjunct faculty pool, we were nowhere near financial stability let alone “established careers.”

 I remember that frustration of endless waiting, the growing intolerable ache, staring at little ones in stores and flirting with them in parks like some lonely weirdo. Then, in 2009 when I was 37 years old, eleven years after Timaree and I started planning a family, Caemon was born. That’s a long time to yearn so strongly, but so worth it once he was in our arms. I look at pictures of myself from that time and see, maybe for the first time, a whole woman, a happy woman. Caemon was the missing piece for me. Motherhood had changed me.  My teaching took on new meaning; I made new friends with other moms; Timaree and I worked on balancing parenting and our marriage in therapy because we wanted to be our best selves for our family.

The week before Caemon was diagnosed with leukemia, I turned 40. I never felt better. I was healthier, happier, and more professionally settled than ever. I was going to start taking Tai Chi classes and had fun plans to join a drum circle. Caemon had just started preschool, and Timaree was well on her way to becoming a certified doula. The Marston-Simmons family was thriving (If there is any regret or bitter pill, this may be it). We were doing great as a family and as individuals. We had arrived at a special time when we were ready to take on new challenges, begin new careers, and be creative and spontaneous. We could never have arrived there without Caemon, but six short months later that path we envisioned for our family would be completely obliterated, and with it, our hearts and souls, or so it seemed.

I know there’s a cliché that a wounded heart still beats, but I’ve found it can do a hell of a lot more. A shattered heart still yearns; it remembers; it feels joy and sorrow, perhaps not in equal amounts, and the joy, well, it’s muted, barely audible sometimes, but it’s there. It turns out, a broken heart still hopes. It hopes not to be broken anymore, and it hopes for what will heal it. When I hold my niece or any of the babies in my life, I feel a glimmer of it. When I allow myself to envision a future at all worth living, those visions always include a child. The want of a child cannot be replaced by personal or professional achievements, creative endeavors, or spiritual pursuits. The want of a child can only be fulfilled with a child. Everything else is just a distraction.

Mama and Caemon

the return

A post from Jodi:

Last April Timaree and I attended a bereavement camp for parents who have lost children to cancer. We were only three months out from Caemon’s death, so I spent a lot of time crying. Interestingly, one mom was fifteen years out from her daughter’s death, and she cried a lot too; most of us did, really, even the couple with the t-shirts that read “One Rule: No Tears”. This trip would be my first lesson in the grieving process and the journey toward healing. One couple who had come from Mexico with their daughter to treat her cancer ended up staying and making a life in America with their surviving son, a strapping boy who tenderly cares for his parents. The mother spoke so lovingly of her daughter who had passed away in 2011; the love she had for her daughter emanated powerfully in the room as she told stories of her compassion for the younger children in the hospital. I was astounded to hear how she, the mom, volunteers in the very hospital where her daughter died, sitting with patients in the same rooms where her daughter was treated. I couldn’t imagine what that must be like for her, but she sees this as the work that best honors her beloved daughter, and despite painful memories, she soldiers on in her memory. At one point in our group session, she reached out to me, grabbed my hand and told me that it would be okay, that my son was with me. Her compassion was enormous.

But when you are broken, really truly shattered, like I have been, there is nothing to give to anyone. The idea of going back to the hospital where Caemon lived and died, well, it was upsetting. So I have been avoiding it, and although we have been near the hospital, even visiting the lab where his oncologist’s office is located, we have not ventured inside the hospital. Why would we? As we have said, a pediatric oncology floor is the last place any parent wants to be. It turns out to be the last place a teacher wants to be as well.

One of my SSU students has recently been diagnosed with leukemia and is being treated at the same hospital, on the same floor as Caemon. Unfortunately, while this is not the first student I’ve had who has been diagnosed with cancer, she is the first student since Caemon died. It hit hard; I dropped an arsenal of F bombs. I was angry. I wanted to help, of course, and so I reached out, offering to come see her if she wanted a visit. She was thrilled that I was coming, but I was nervous. Would I be able to subjugate the grieving mother in order to be the reassuring and compassionate adult my student needed?

Timaree helped me gather a few items for a care package: blankets, cookies, magazines, croc tattoos, but she would not be accompanying me on this journey.  This is my student, and we determined that it would be unnecessary and uncomfortable for Timaree to come. Luckily I am blessed to be friends with one of the nurses on that floor, and she offered to go with me.

As we crossed the street from the parking garage and entered the Emergency Bay as I had done so many times before on my way back to Caemon, I felt the weight of the place again and turned serious. Saturdays are quieter, less hectic, so we quickly made our way down the long hall toward the elevators.

Suddenly, it’s Halloween 2012, and Caemon is dressed in his full nurses’ uniform, walking down this hall, and an ER nurse, clearly smitten with this handsome young nurse, asks him if he wants to come to work with her. He turns to follow her, and we quickly intervene, reminding him he already has a job up on the seventh floor!

I was grateful it was a Saturday and that I wouldn’t have to share the elevator with 30 people. I looked down at my “Visitor” sticker, not the “Parent” one I wore before, and it was the visual reminder I needed to pull me back to the present. I used the ride up to control my breathing and steeled myself for an onslaught of what, I didn’t know. The doors opened, immediately revealing the pink Pac Man tile décor that is unique to Seven. We whisked through the double doors, and I was back in a world I cannot seem to escape. There were those words: “Pediatric Oncology and Bone Marrow Transplant Unit.”

I pointed to a room as we passed, “That’s the room where Caemon was diagnosed.”

For a moment I see Timaree sitting on the side of the bed, Caemon drooped in her arms as a nurse works around them to take his vitals.

I approached the nurses’ station and was warmly greeted by the RN who was my student’s nurse that day. I gave a nod to my off-duty nurse friend and followed the other to that very room in which my son was diagnosed. It wouldn’t be until later that night that I would remember being crumpled on the floor of that room with my wife, crying in despair and disbelief that our beautiful son was so sick.

I greeted my student, offered a hug, and we sat quietly as her vitals were taken. Mama Jodi and Teacher Jodi merged. I gave her the care package and helped her unwrap her zebra print plush throw, so much cozier than hospital linens, and I asked after her mom. We took a walk, chatted, and I pointed things out to her as we walked. “Hey, did you know you could bring food from home and freeze it in there?” I asked. She told me about her mom’s posole.

Without thought, we rode the elevator down to the sixth floor, which is as far as she is allowed to go, and I showed her a place her family could go if they needed to use a computer or grab a cup of tea. It was closed, of course, so we kept walking. I caught sight of the ramp that leads to a sitting area outside, but it was raining so we kept walking.

Caemon is in his yellow and red car and we’re racing down the ramp, bumping into walls and laughing. He wants to do it again and again.

We walked past the playroom where Caemon danced and played, past the PICU where he was taken when he coded on his last morning, past the waiting room where we were told he wasn’t going to survive. It was quiet, unpopulated. I suggested we go back up to the seventh floor where I could procure her a cup of tea. We sat in the waiting room admiring a large tropical fish tank, and she said, “I think after all of this, I want to do something in the medical field.” I nodded approvingly, not surprised that she had been inspired by her medical care just as my son had been.

She asked if I would come back and bring her some books, and I offered to talk to her mother if she thought that would be beneficial. After an hour or so, I left to say my goodbyes and retrieve my off-duty nurse friend who had dragged herself and her newborn out in the middle of a rainstorm just to be by my side. I swear these people are real and not literary embellishments. As I was saying my final goodbye, we shared a quick memory of Caemon in the hallway searching for the otoscope (a device for peering into the ear canal), which lives on a rolling cart and is the only of its kind on the floor. Caemon had fallen in love with it and wanted to find it, but it was an elusive hunt.

“Have you seen Otoscope?” he asks nurse after nurse. They all tell him that they will be on the lookout for it, but Caemon is determined. He stands in front of the locked treatment room: “He’s in there. Go get him” he orders, except I don’t have the code. Finally, Nurse Amy tells him that she will find Otoscope and bring it to his room. He complies. He knows she won’t lie to him, and he spends the next hour or so eagerly anticipating the visit from this rare device. His smile when she rolls in with Otoscope is luminescent.

The mother from bereavement camp was right when she said Caemon would always be with me; he was with me that day every step of the way, present in the people whose lives he had touched, present in the memories of his life there, present in me. I don’t need to relive the code, the trip to the PICU, the devastation of walking out of that hospital the last time without him. I already survived it once. Because he is always with me, I can visit my student, speak with her mother, and offer some support without internalizing their tragedy or projecting my own onto them. I’d call that progress.

 

 

i had a boy

Today, as I engaged in the otherwise mundane chore of putting away clean dishes, I discovered in a drawer containing lids and other plastic items one of those landmines I have talked about: sitting in the back of the drawer was a sippy-topped water bottle. It was something Jodi had gotten for Caemon in his last days because his throat was hurting, and the only thing that soothed it was his orange tea. We got him the bottle so that he could keep the tea in his bed. He woke up a lot in the night in discomfort, so he would take little sips all night, declaring after so many of them, “Mmm. That’s good. That feels good on my throat.” He was so grateful for this, a comfort from his previous life, the life before leukemia.

I have obviously come across this bottle before, but today, I was organizing the drawer, and I spotted it, and as I was organizing, I absentmindedly picked up pieces of a popsicle mold, and as I held these in my hands, it hit me so hard: I had a boy. I had a boy, and he died.

Lately, I seem to be repeating these sentences at least a few times a week: I had a boy. I had a boy and he died. I say it with incredulity. I say it with obvious pain, but the reason I say it is because I have to remind myself.

The cruel thing about losing my child just three and a half years into parenting him is that it can at times feel like he was a figment of my imagination, like his existence was the best and worst dream I ever had. There are wisps of that life around me, reminding me. For instance, there are these cloth diaper wipes that we made before he was born, little blue and white pieces of flannel, and they still show up in our laundry from time to time, even though neither of us remembers using them in our lives now. A little spoon of his, with an orange handle, remains in our flatware drawer, and I occasionally use it for eating yogurt or stirring coffee. Of course there are whole piles of his things, photos of him everywhere, but there are plenty of days when it is hard to fully grasp that I actually had a child, that we lived the lives of mothers of a small boy every day, that he was the center of our world, that we folded his laundry and changed his diapers and read him books and tripped over his toys and walked to the park. We had a boy.

There are times when I go about my day hardly thinking of that former life. I might be busy with work, cleaning the house, crocheting, watching television, and just going about life. I might even be feeling okay, even slightly normal, but then something reminds me. I empty the dishwasher and that orange-handled spoon is there, or I pull out the iron and see the bandaid he stuck to it over a year ago, and I remember: I had a boy.

I started teaching again recently, for the first time since I was pregnant with Caemon. I write assignments, annotate readings, interact with students and colleagues. My mind is filled with ideas about how I want to approach my class, getting places on time, fitting my old schedule into my new one. There are days when I barely have time to think of my son, even with his picture everywhere.  I didn’t mention until the end of the second week that I had been a mom. It was easy in some ways to slip on this old glove, to be a childless teacher of writing again because the last time I taught, I wasn’t a mom yet. I don’t know what it’s like to leave for work without my child because I always worked from home, so there are days when it just seems like I must have imagined it all.

On one day when I was busy not remembering that life of mine, Jodi showed me a picture of a mother gorilla hugging her three-year-old. I saw on that gorilla’s face a feeling I had had a thousand times as Caemon’s mom. I saw her child snuggled safely in her arms just as I had held Caemon, and I knew just how that felt. I can close my eyes now and feel that sensation of being someone’s home base, of loving what was in my arms more than life itself. This photo of these animals reminded me of sitting on a rock in Yosemite in the same pose, his head tucked under my chin, my heart so full it might burst.

I suppose this is a part of grief that isn’t mentioned so much–the pain of forgetting. How could I not remember life with my son? How could I not remember what it’s like to be a mom? How could I not know that all of it really did happen, that Caemon was real, in fact the most real and exquisite thing I have ever known? But then, how can we even imagine our child having cancer, our child being that beautiful bald boy in the photos for cancer charities, our child for whom there is a funeral and a memorial bench and a death certificate? It’s all unfathomable.

I’m just so afraid to forget him. There are so many days I walk through my life now and can’t believe that instead of spending a day dealing with naps and baths and bedtimes and food thrown on the floor, I’m thinking about what on earth I’m going to do to fill the next few hours, what I can crochet or draw or paint or sew or otherwise distract from the emptiness that was created when my son died.  I had a boy, and that boy made this life so sweet and crazy and unpredictable and messy and loud and sleep-deprived and funny and adventurous and beautiful and precious and full and everything a life should be with a child, everything I ever wanted.

 

I had a boy.

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in my mind, we ran away

A year ago today, we woke up in our home as a family one last time. We got into the car together one last time, and we drove to UCSF with Caemon one last time. He was being admitted to the Bone Marrow Transplant Service and would begin his chemo conditioning regimen at 9pm. Before that, he had hours of tests and a fairly miserable scrub-down with a soap containing chlorhexidine, meant to remove as many bugs and outside germs as possible from his skin. His room from then on would be a clean room, one for which we would have to scrub in any time we left the hospital and returned.

Caemon was so cooperative that day with so many things. He brought his medical supply tacklebox, having left his medical supplies at home (even these had to be fresh). He had a chest x-ray and sat so very still, and while that dreadful bath had him protesting wildly, he happily changed into comfy clothes and took a nap with Jodi on the bed while I decorated his new room with trees.

But I can tell you that in my mind that morning, I wasn’t driving him to UCSF. When I woke up early, and he was still sleeping, I imagined staying home with him forever. I dreaded what was next, knowing the transplant itself could kill him. Every cell in my body wanted to hold tight to my little family snuggled up in our big bed and just never go. I wanted to see his hair grow back, watch him turn the lights on and off on our Christmas tree, dance with him free of tubes and hospital beds and worries about platelets. We had spent the last three days baking his favorite pumpkin muffins, going out at night to see Christmas lights on houses (in fact, one we visited all three nights we were home), lighting fires in our little pellet stove, and simply being a family with our own agenda, our own rules, our own space. If Caemon wanted to eat nothing but tuna sandwiches for an entire day, that was what he had. If we wanted to stay in our pajamas all day long, we did. We made messes, cleaned them up, hugged and danced and snuggled and played and read. It was bliss, and none of us wanted to leave it. In those moments, with our son the closest to leukemia-free he had been in who knows how long, it almost seemed possible to just forget about the hospital and just take our lives back.

But it wouldn’t be possible without a transplant. We all knew that. We all knew the leukemia would return with a vengeance in no time if we didn’t go through with it, but the instinct to go anywhere but that hospital was strong in me that day, and I fought it over and over again as we packaged all of Caemon’s clothes in giant ziplock bags, placed his toys in sealed plastic tubs, packed up our own suitcases full of hospital mom clothes, and drove to San Francisco.

That night, after the tests and the bath and after “Sad-Sad Boingy Tube” got hooked back up to the IV pole, and after Caemon and Mama had a nap, and I decorated the room with trees and lights and as much magic as I could muster, we sat together in his room, and we gave Caemon what he affectionately called his special BMT present: a little Christmas carousel that lit up and played music, something he had admired countless times the year before both in a store and in a book we had.  Caemon loved carousels, so to have one of his one was pretty fabulous. He snuggled up by himself in his bed, turned it on, and lost himself in it. For nearly an hour, my son gazed at the lights and mirrors, listened to the music, and watched the little animals spin around and around. When the little bears riding one of the horses would come around, he would kiss his fingers and gently touch them. He did this over and over, speaking softly to the bears. He was a little boy, mesmerized by a holiday toy, and I found myself transfixed by the beauty of the moment, yet saddened too, for beyond the innocent smile and wonder, there was something else in my son’s eyes–a sort of resolve that came with being back in the hospital, hooked back up to tubes, submitting to treatments. To see a sort of knowing wash over him, to see him visibly coming to terms with leaving home and living in the hospital again broke my heart.

Thinking back to all of that now is so hard because I know what he was about to endure, and I wonder if he was anxious about it. I wonder if he had any idea what was to come. I don’t know. I know that it was scary for all of us and that we maintained more hope than I ever imagined could be mustered, that we did everything we possibly could to save our son. A year ago today began the greatest fight of our lives, and while I know I wouldn’t have changed anything, I still sometimes wish we could have just stayed home, lit a fire, and snuggled up on the sofa with a big stack of books and our beautiful, beautiful boy.

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the gravity of grief

In the days and weeks following Caemon’s death, I found myself wanting to pick up heavy, bulky things. I needed to feel the resistance of weight in my arms. For three and a half years, I had been building my strength as my son grew from his sturdy nine pound eleven ounce birth weight  to the thirty or so pounds he was in his final year of life. As a mom of a young child, I became accustomed to having this boy in my physical presence at nearly all times, his weight in my arms. Jodi and I were fond of being close to our son, and he felt most at ease in our arms, so we kept him close throughout his early years knowing that soon he would be taking steps away from us as he went to school and began gaining more and more autonomy. For those first few years, though, that physical proximity of Caemon to me or Caemon to Jodi was a fact of life that we cherished.

In the hospital, we also stayed close. From his first night there, we would lie in his bed offering comfort and familiarity in a place where everything seemed scary and foreign. I think we took comfort there too, for lying in his bed meant being the one thing that meant the most: being Caemon’s parents. When we found out Caemon relapsed, and everyone around us was telling us that the end of his life was near, we got the big bariatric bed so that we could all lie in it together, so that we could stay as physically close to Caemon as possible. He insisted at that point, even as miserable as he felt most of the time, that someone be in his bed at all times. Usually this meant me or Jodi, but sometimes it meant he would ask a nurse to lie down with him (for one favorite nurse visiting on her day off, he actually kicked me out of the bed so that she could lie next to him). He wanted the closeness with everyone, and we all obliged because if we could offer this beautiful boy of ours some comfort we would do anything we could. In those final days, we couldn’t hold him, for he was in too much pain, but we kept him so very, very close.

In those first few weeks and months after Caemon died, I physically felt like I was missing something. I was missing a good thirty pounds that I needed to heft. I was missing the closeness a little boy shares with his mommy too: skinny arms draped around my neck, a sleepy head resting on my shoulder, soft little hands playing with own hands or moles or—one of Caemon’s favorites—my collarbones. In those early months, I could close my eyes and instantly feel the weight of him.

It’s harder to access that sensation now. After nearly ten months without touching or holding my son, sometimes I have to reach further to remember that feeling of carrying his weight, and there is a new grief in that. I am finding my arms that were once strong enough to carry around thirty pounds of boy as well as all of our gear, maybe even a cat, are weakening such that I don’t want to heft heavy objects anymore. I find myself surprised when I strain to pick up something that was once so easy, saddened that such resistance is so unfamiliar now.

The sort of strength training we undergo as parents is the best sort. Our muscles adapt slowly to our growing children so that we become stronger as their weight becomes greater. It was true in the hospital too that the more burden we were offered, the more we carried and even normalized because what else is a parent to do but carry the weight of the child, and when necessary, the weight of the child’s illness, the weight of circumstance and need and fear and pain?

In Jonathan Safran Foer’s book Extremely Loud and Incredibly Close, the central character, a little boy who has lost his father, frequently describes his grief as “heavy boots,” and this is one of the most apt descriptions of profound grief that I have found. There is an immense weight to grief, one that makes the bereaved feel the gravitational pull is somehow magnified with the loss of a person. Sometimes it feels like a lead apron was somehow sewn into me, that this new burden is forever part of me. But even that I am learning to carry, some days with a bit of grace and others in a lumbering, faltering, fashion that reveals just how heavy this weight really is. But this is the weight I have left; it is my duty to carry it with me, just as it was my duty as Caemon’s mother to carry him. This lead apron, my own heavy boots, they make up the 3-G force of loving my boy and losing him.

sacred

Yesterday, Jodi and I attended a wonderful writing retreat focused on grief and healing. A good deal of writing came out of the day, but this poem by Jodi is one piece I will treasure forever. With her permission, of course, I share with you Jodi’s poem, “Sacred.”

Sacred 

Drawing your bath after our family dinner—
Not too hot and not too deep—is my sacred duty.
We will spend the next half hour building and destroying
block towers on the side of the tub;
hiding rubber duckies under colorful, plastic nesting cups;
transferring water from one container to another;
and flinging wet washcloths at the tiled wall (at just the right
angle and velocity) to see if they’ll stick.
This is our sacred ritual.

Before you walked, I picked up your slippery, warm body,
wrapped you in a hooded towel, and carried you to the bed to be diapered.
Looking down at you as you kick, kick, kicked
inside your sleep sack,
there was no past or future,
only the simple perfection of “now.”

As a bigger boy, you were eager
to exit the tub by your own self
and skip ahead to picking your bedtime stories.
Once you hurried a little too much and slipped crossing the hall.
You were more careful after that.

The song Mommy and I made up about frog feet, the one with the jazz clap at the end—
I remember how you always nailed that last whispered “yeeeeaaaaah,”
like you’d been doing it for decades in smoky nightclubs.
It was cool, man, that you liked jazz.

In the hospital you weren’t allowed to have a regular bath.
We filled the pink plastic tub they provided
with warm sterile water heated in the microwave
and scented it with lavender oil.
After some initial obligatory protest,
you quickly learned to love
long, luxurious foot soaks
while one of us gently bathed you in bed
with the softest linens we could scavenge. 

Bald head wrapped in a baby blanket, serene in your post-bath glow,
you look like a child monk.
You cling to me as I dry your chafed back.
Afraid of tubes pulling and bandages tearing, you no longer hurry for anything, even stories.
We slather you in soothing ointments and balms during the diapering ritual.
We didn’t quite make it to potty training, did we?

 Space enough for only two on the blue, vinyl chair-bed,
I transport you to Mommy’s waiting arms for snuggles
Together, you gaze out the big windows overlooking the city.
It’s not the same; we all know it!
no singing about frog feet, no jazz clap, and sometimes no stories at all.
But holding, yes, and humming, yes,
rocking, yes, kissing lash-less eyelids, yes!
—a sacred nightly spa-fragranced baptism—
Clinging desperately to the now, stretching it out as long as possible,
I watch you fall asleep,
the hopeful scent of lavender heavy in my nostrils.

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