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.

 

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.

coming to terms with the seasons

This past August, as autumn began to show its face a bit early in the trees and vineyards where we live, I found myself in a panic more than once to see the vibrant greens turning so early to ambers and reds. As the month progressed, and we passed Caemon’s diagnosis anniversary and this his fourth birthday, and a year since his first chemo infusion, and then the autumnal equinox itself, I found myself in less of a panic as the leaves kept changing and then falling.

When Caemon was diagnosed with leukemia on August 21st of 2012, time stopped. Yes, months passed by. We saw dates on the calendar move from September to October, even to December, and, yes, February, but in my mind, I was stuck in August, at the beginning of the school year and the end of summer. I was stuck in warm weather and sunshine, a garden heavy with ripe tomatoes, and a family so filled with new adventure and possibilities. A very big part of me stayed in August of 2012 and will likely always live there.

It should be no surprise, then, that the changing seasons have been a bit torturous and confusing to me, particularly the transitional seasons. Last year, we were in the hospital for fall and winter. We watched the leaves change and the rain come from our big windows and occasionally on trips out into the cold of the city. But it all seemed fairly abstract in the grand scheme of things. All that mattered, really, was that we get home with our cured son. We imagined a winter and spring and summer confined to our house with a recovering boy. I imagined a big family birthday party at the end of summer. For some reason, having Caemon with me meant the seasons could go on. Together, we could marvel at the new green of spring, enjoy the warm sun of the summer, and crunch, crunch, crunch through piles of leaves in the fall.

After Jodi and I left the hospital to find ourselves nearing the end of winter and not summer, everything seemed wrong. It should have been no surprise that the seasons were opposite what they should have been because everything else in my world was turned on its end. I had gone from getting precious little sleep to sleeping much of the day, from constantly needing to be present and aware for my son to having nearly no responsibilities, no one to nurture except my grief. When spring did come, it was felt like something of an assault. I wrote in my journal as the warm weather came:

Spring feels like a great betrayal to me this year. How dare the daffodils and the tulips show off their promise of bright blossoms when my boy’s light ceases to shine. The eighty-degree heat feels cruel, the sun torture. We should be donning our short sleeves, flinging off our shoes to run around in the spring-green grass. Caemon should be begging to “play buckets” at the beach. But this year, spring feels like a cruel, cruel season. We had all the promise of seeds lying dormant with his transplant, and all that promise died with him. Yet the spring, as one writer says, “is persistent.” So much so that it ignores the grief of a mother who has lost her child. It is ripe with all its fresh beginnings, just as it should be. And I am angry about that.

Honestly, the summer wasn’t much better. It had me miserable and wanting to hide from its brightness because how could a world without Caemon be anything but dark and dreary? How could a world where my beautiful son died be resplendent with new green growth and then with the bounty of harvest? How could life move on?

But the wheel of the year turns and turns whether a child has died or not, and as the calendar flipped to August this year, there was something that began to settle in, despite my resistance to the early signs of fall. Suddenly, we were in the time of year when the calendar stood still, and slowly, slowly, it began to creep forward. Instead of hiding from the shift from summer to fall, I opted to live it. I started daily morning walks in our sweet little community, wandering from one tree-lined street to another, noting the changing sky, watching very carefully as mushrooms popped up, certain trees turned to bright crimson, and others rained golden leaves into glorious pools on the now-damp earth. With each walk, I began to embrace the turning of the season, the passage of time, yes, even without my son. So often on these walks, as I feel overcome with the beauty of a misty autumn morning and the way it feels to move briskly and to see my breath out in front of me, I tell myself, “This is what it means to be alive.” Despite the feeling that part of my life ended with my son’s, somehow, I keep breathing; the days and months and years move forward without him, and so do I. While I still find myself in days when I just want it all to stand still, I have finally surrendered to the changing seasons, embracing that time will keep passing and I will keep living.

As the days pass with a more natural pace now, I force myself into them, eager to don warmer jackets and scarves, to crunch, crunch, crunch through any pile of leaves I see, and Jodi now joins me on some of these walks as together we come to terms with passing time. Just yesterday, we were walking through our neighborhood, and we spotted the most beautiful maple growing atop a small hill. Beneath the tree was a perfect pile of leaves, and we stopped to admire this perfect spectacle. With a glint in her eyes, my wife ran to the tree, dropped into the leaves, and rolled down the hill, emerging covered in signs of the season, a satisfied smile creeping across her face as she returned to hold the hand of a teary-eyed me.

Yes, this is how it feels to be alive.

honoring children’s grief and an open letter to our niece

About a month ago, our sweet five-year-old niece and her mom came for a visit. She has visited a few times since Caemon’s death, and each time has been difficult for her. The first time following his funeral we were still at our old house. I walked into Caemon’s bedroom to find her some books and toys to play with, as we didn’t want her to be in his room without supervision. She followed me into the room, and as I was gathering some things, she looked up at me, her big brown eyes so earnest, and she asked, “You miss Caemon?”

“I sure do, sweetheart.”

“Me too,” she agreed. “Too much.” My heart broke as I knelt down to hug her, and we talked about how much we missed him. We gathered some favorite books of his, and proceeded to read. Later, on the same visit, she was wandering throughout the house as though looking for something. A look of sadness strained her face, and Jodi asked what she was looking for. She didn’t know. Then she asked if she was looking for Caemon, and she nodded and began to cry. She knew he wasn’t there.

On this most recent visit, our niece’s grief was still very present, and while she seemed a little more easily distracted because we were in a new home, she still felt Caemon’s absence keenly. When she saw our little altar for him, she stopped and admired all of this things. She regularly grabbed his photo books and wanted to sit with us and look at them. Throughout the visit, she shared her favorite memories of Caemon: a day she and Caemon and my parents went swimming and they got to eat ice cream; another day when we went to the lake and she and Caemon played with water balloons. She delights in these memories, and we urge her to share them–with us, with her younger cousins–because we know she is one of the few children who will remember Caemon. We have such hope that any future children we may have will know Caemon through their cousin, and that she will get to relive knowing him through her sharing. This is a big responsibility for a small child, though. It’s huge burden for her to bear, and while I’m not sure it’s fair, her grasp of this loss is powerful. She knew Caemon. They were very close, and she feels his absence so deeply any time she’s around us, any time she thinks of him. She is the only child who was able to visit Caemon in the hospital (early on) or to Skype with him when he had his bald head, and, thus, she has a frame of reference for all of this.

There are other children who are trying to understand Caemon’s death, children who had played at the park with Caemon or had come to our home. A few of them still talk about him regularly. One girl has assigned him a star. Another boy asks his mom from time to time where Caemon is, wanting to know if maybe he’s still in the hospital. Other children whose parents may have only known us through this blog or other online venues have had their first talks about death with their parents through Caemon’s loss.  Our little nephew, a year younger than Caemon, a boy who idolized his “big boy” cousin, doesn’t quite know where he is. When we mention him, he still looks around as if he might see him, though he’ll tell his parents that he is in heaven.

Last month, as our visit with our niece was nearing its close, we were driving around town. From the back of the car, she shared, “I wish Caemon was still alive. I wish he wouldn’t have died.” It really is that simple. It’s what we all feel wrapped up in the perfect language.

The grief of the children in our lives is something I hold so tenderly. I am saddened that any of them have to know death at all at such a young age, but a death of one of their peers has got to be utterly confusing, mind-blowing. Many of them still don’t grasp object permanence, let alone mortality, memorial services, cancer, rare leukemias, and grieving parents. I ache for these children who are trying so hard to understand, for their parents who are trying so delicately to help their kids navigate these waters. I can only hope that by knowing our boy’s story, these kids will somehow grow up more loving, more compassionate and will help to carry the torch for a boy whose light was extinguished far, far too soon.

Shortly after her visit, my wife wrote this open letter to our niece. We would like to share it with you here:

Dear Five-Year-Old Bri,

Thank you for coming and visiting with us. You’ve grown up so much over the past year, and your heart is as beautiful as ever. I know it’s not as much fun here without your cousin, Caemon, and I know you miss him very much. We do too. Sometimes it can be very sad to see so many reminders of him but not be able to play and laugh like you used to.

We liked hearing your stories about him, and we want you to know that you can always talk to us about how you are feeling, even if it means we cry a little bit. I loved your stories about last summer and how you and Caemon practiced throwing water balloons at Grandma’s feet. That was so much fun! You two had a lot of adventures together: swimming at Morton’s Warm Springs, riding around in Caemon’s wagon, swinging on Grandpa’s giant swing, playing tea party, taking baths, and, of course, all the sweet hugging and kissing.

You need to know that Caemon loved you above all other children, Bri. He loved when you came to stay with us, and he really loved being at Grandma and Grandpa’s with you. I know you are hurting, but we hope over time the memories of you and Caemon will make you smile, and maybe you will pass on your stories to your younger cousins who didn’t know him. We hope you will keep him in your heart, as you remain in ours. We love you, Bri, and if you ever need us, we’ll be here.

Much Love,

Aunt Jo and Timi

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traversing this life

In just a few days, we will be enduring the one-year anniversary of Caemon’s diagnosis. This month is excruciating. Last summer with Caemon was so beautiful, and yet, when we look back on last August, it’s impossible not to see the little boy who didn’t feel well for no apparent reason, the boy with all the bruises and the dark circles under his eyes, our little boy who was, indeed very, very sick.

A year ago this weekend, we took him to an air show. He had fallen in love with a local air museum here last summer. That was, in fact, where his tattoo obsession began (they gave him a bunch of air museum tattoos). He was so sick that weekend. He didn’t even want the rare treat of frozen yogurt we offered him. We thought he was just reacting to an antibiotic. We were so wrong.

It is so hard to express the pain this month has brought. I find myself trying to stay busy only to find myself too busy, too overwhelmed with projects and ways of bringing meaning to Caemon’s life and death. And how busy can I stay, really? There will always be another date looming ahead. After the diagnosis anniversary will come Caemon’s birthday and then the holidays and the anniversary of his transplant and the anniversary of his relapse and the anniversary of his death. And in between will be every fifth of the month marking yet another month I’m missing my boy in my arms. This month it was six. Six long months.

There are days in between when I’m okay, days when I even laugh and go about my life as though I’m a normal human being walking the planet, but I am finding the hard days are just as hard if not harder than before. I find myself struggling just to bring words to the page, but I want to, so here I am, not a lot to say, not a lot to share because it’s all so oddly, freshly painful once again. I’m learning yet again that this is how grief works. There is no straight line from beginning to end. It’s a tangle of bumpy roads and well-worn paths and plenty of cutting straight across untouched, sometimes seemingly insurmountable terrain. The kicker is that I never know where any of these paths is going to take me. I just keep walking.

Below are some photos from last year at this time:

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what manual?

Another post from Jodi:

Anyone who knows me well knows that I don’t live my life or do my job following manuals and regulations. I read them, consider them, and then break them, sometimes without even trying. When I was in the military, I broke rules merely by being gay. See? No effort at all. When I was 17, I had this awful job cleaning motel rooms at a seedy dump for $4.25 an hour. It was back-breaking work filled with lugging huge armloads of bedding up and down stairs, and most of my co-workers were elderly and unfit. One day, Maria, a 60-year-old grandmother, was assigned second-level rooms to clean, and I was working downstairs. When I learned Maria was in a great deal of pain, I offered to take her assignment, as I was young and had a strong back. It was no big deal. But management found out and reprimanded me. I hate to be reprimanded, so I walked out on the spot.

I opted not to use a severely outdated and incorrect textbook as a new teacher at one institution and was blacklisted. On a daily basis, I make my wife pay bills, fix things, research information, etc. because she does read the manual. Anyone who has been reading the blog can see how much of an expert she became on leukemia treatment and Caemon’s disease. She remembers every medication and chemo cycle, how long they went on, what the symptoms and side-effects were. Seriously! I can barely remember to put gas in the car most days.

People have said that there are no manuals to grieving, but there are. We have been given books to read, websites to visit, pamphlets and guides to grieving. I’ve looked at some, ignored others, and promptly broken most of the rules.

I don’t exercise, or attend support groups. I work hard not to feel my grief, but it only delays and intensifies it when I can no longer hold it back. I haven’t turned to God, and I’m pretty spotty about attending therapy. I’m terrible at this.

I don’t know why I’m a rule breaker or why I make things harder for myself by being one, but leading with love is risky business. Broken hearts are the collateral damage. I’m capable of love still, of course, and sometimes even happiness, but a duality has developed where pain and joy coexist, pushing and shoving each other for a spot at the front of the line. Learning to live with that duality for the rest of my life won’t happen because I read “Ten Steps to Grieving a Child.” Learning to live with it, well, I guess I’m writing my own manual — Flailing in the Dark: A Rulebreaker’s Guide to Grieving.

But losing a child is not like losing a job. I can’t just go out and get another one, and I certainly can never replace my precious son. When Caemon was first diagnosed with JMML, his then-Oncologist described a bone marrow transplant as “high risk/high reward.” Isn’t that what having a child is anyway, even without the added nightmare of leukemia? Isn’t loving a child with a depth so profound as to be scary a risk? Yes, as we learned, it is a risk, one I would take over and over because to love that deeply, to invest every bit of my soul into that beautiful, innocent being, was also the highest reward.     

the things we carry

When Caemon was in the hospital undergoing one of his several rounds of chemotherapy, there was a day I was in the little kitchen set up for parents. Another mom and I were heating up our dinners, recognizing one another by our blue bracelets and Parent/Guardian stickers. She half-jokingly asked, “Not to sound like we’re in prison, but what are you in for?” We talked about diagnoses and courses of treatment for a moment before the talk turned to how long we’d each been in. I held up my bracelet, once a bright royal blue, now faded to the blue of a slightly overcast sky. “Awhile, huh?” she remarked. I think at the time, Caemon had been in the hospital for nearly two months. It had been a long haul, and by the looks of the other mom’s bracelet, her stay had been nearly as long. It was something we did, us parents. The new parents, the dads of brand new babies up on the maternity floor had these crisp bright blue bracelets they wore proudly. Although they were the same bracelets, those of us on 7-Long wore ours like a soldier might wear dog tags. On those few occasions when we were able to go home for a short span, we would leave them on until we walked through the door, and then we would pull out Caemon’s scissors and let him cut them off of us. It was an important ritual allowing us to reclaim a little bit of normalcy.

Note the blue wristband and the Caemon t-shirts.

As the months in the hospital progressed, we noticed the long-term parents had more than just the identifying wristband. They had gear: maybe t-shirts having to do with their kids, often a silicone awareness wristband inscribed with something meant to inspire strength, any number of outward reminders of their child’s illness and the fight they were there to endure. Some of the doctors wore many of the wristbands on their stethoscopes at once. One such doctor collected them until a stethoscope was full, and then he hung it in his office and got a new stethoscope. The bracelets were that meaningful to him, and they meant a lot to the parents and kids as well. Caemon loved giving his bracelets away and seeing them on others. “You have a Caemon the Croc bracelet!” he would always note if someone walked in wearing the orange silicone band.  Jodi and I added to our Caemon bracelets by purchasing “Bravelets” for one another. These are orange leather and steel bracelets engraved with the simple phrase, “be brave,” a reminder we both needed and shunned. What other option was there? There is a sense of purpose behind all of this gear, a sense that somehow the energy and awareness harnessed will help heal our children. It becomes sacred, battle armor, something to keep us going.

One would think, then, when the battle was lost, we would put the armor away, that we would move on to something else. What I have found is that nothing could be further from the truth. Parents who have lost a child tend to fear their children will be forgotten. Parents who have stood by their children through medical treatments for an eventually fatal disease don’t know how to give up the fight. So we adorn.

When we went to the bereavement camp for parents of children with cancer, Jodi and I witnessed a wide display of bereavement accessories. There was one family that had t-shirts, sweatshirts, jackets, and hats, all with their fallen daughter’s famous phrase: “One rule: no tears.” Others wore angel pins, necklaces with their children’s names.  Another couple had large Lego man tattoos on their arms commemorating their son. One morning as several of us were having coffee together, one mom raised up her arm and said, “This. This is what I’m about now,” and she began to show us her bracelets, one for her son, one for another child lost to the same cancer, one for parents who were grieving. Everyone had some physical manifestation of their love and grief for their children, for it seems that with bereavement, we don’t lose the armor; it just changes shape.

Take Jodi and I for example: we both regularly wear our Caemon the Croc bracelets, but we also wear our Bravelets, and we wear our pendants that contain bits of Caemon’s ash. On any given day, we might wear a crocodile necklace, or these beautiful bee necklaces given to us by Bloodsource after our talk there. We wear magnetized healing stones, carry crystals that Caemon held in our pockets. We even wear crocodile socks or polka dots, or just the color orange. There are some days when we wear many of these things at once. We’re much more adorned than either of us have ever been; we clang and clink and jangle wherever we go, and all of this to remind us and others of our son. A few weeks ago, at a talk we were giving for the Leukemia and Lymphoma Society, we were given blood drop pins. Jodi and I quickly and expertly donned our pins, knowing we had just added to our collection of these sacred objects we now carry, each of them part remembrance and part albatross.

The temporary crocodile tattoos that Caemon’s uncle has circulated have also been part of our accessory overload. We have worn them on our wrists or our hands until they fade away, and then we replace them with fresh ones. Recently, after a long wait, we finally received real remembrance tattoos, replacing the need for the weekly croc tattoo application. Jodi’s tattoo is a bee pollinating flowers on her shoulder, the shoulder where Caemon would rest his head while they danced and snuggled. Mine is a representation of a caiman on my forearm, the forearm on which I held him as a baby, the same forearm where I held him up on my hip as a toddler, the place where he rested his head when I rocked him to sleep, even as a bigger boy. While these are meant to remember our son, they also pay homage to his love of tattoos, and, of course, they mark us eternally, just as our loss has.

There is so much to the need to adorn ourselves and mark ourselves as bereaved parents. In times past, and in other cultures, people in mourning have had very visible markers. They wore veils or all black or arm bands–something to show the world that they were fragile and shouldn’t be trifled with. Our culture doesn’t allow for this much. Yes, people do get memorial tattoos; they may even put vinyl stickers on their cars memorializing a lost loved one, but for the most part, we don’t grieve outwardly. Publically, grieving is supposed to be expedited. The bereaved are often expected to go on with life fairly quickly, because, as people will remind us, “Life is for the living.” But the fact is that life doesn’t just go on when one has lost a child, and those of us enduring this tragic fate are left to wander what can be a very cruel world. On any given day, a grocery store clerk might be rude, sending us into a tailspin, or a server in a restaurant may interrupt a weepy moment with the need to pay the check, not realizing how difficult it might be for us to move at all, and in those moments, we wish for those veils or those armbands so that there might be a little more gentleness, compassion, or generosity of spirit.

This is why so many of us feel the need to adorn ourselves with reminders. There is also the idea, however, that we want to carry our children around with us in some way. We want them to be known, remembered, even asked about, and the only way we can do this is by calling attention to ourselves with clanging jewelry, flashy t-shirts, an abundance of bracelets, or, yes, even tattoos. One of our greatest fears as bereaved parents is that our children will be forgotten, and we’re determined not to let that happen. That becomes our greatest mission. And so long as we have the things we carry, our babies live on.

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.

Images courtesy of In Her Image Photography.

incendiary

A few days after Caemon died, Jodi and I were sitting in or kitchen thinking about lunch. I knew I couldn’t cook anything, but she was ready to make a little food, maybe some sandwiches. She suggested tuna. At the mere mention of tuna, I became so anxious and deeply sad. “I don’t know if I’ll ever be able to eat tuna again.”

My wife thought I was being a little melodramatic. She giggled a little and asked, “Really? Tuna?”

“I just don’t think I can handle pickles.” Again Jodi laughed, and I finally exclaimed, “I just need a break from tuna, okay?!” The absurdity of it all didn’t escape me, and while I laughed, the thought of eating one of Caemon’s last favorite foods rocked me with so much pain that I couldn’t entertain even seeing a tuna sandwich, let alone eating one.

Tuna sandwiches weren’t the first landmine we discovered after Caemon’s death, but they were a memorable one, in part because it is a bit funny to swear off tuna while grieving and in part because I don’t know if we realized just how much the simplest things in our lives could explode in our faces.

Landmines are everywhere in our house, in our lives right now. I might open a desk drawer and find Caemon’s “lists” scribbled all over my notepads. We can be folding our laundry and find one of his little socks stuck to something–or worse, we can find none of his clothes. We are getting accustomed to those little everyday reminders. It’s natural for us to see hints of him, less so for us to see no traces of him, but it is no less difficult to be reminded that he was once here, and now he is not.

We can be going about a day, finding ourselves handling the grief a little more evenly only for the mail to come. Yesterday, it was paperwork from Jodi’s job to remove Caemon from her health insurance plans. When we returned from our trip to Sedona, it was an envelope containing copies of his death certificates. That wasn’t a landmine. It was a dirty bomb, and it’s one that  keeps popping up around our house because we honestly have had no idea what to do with a manila envelope full of death certificates for our three-year-old boy.

Yesterday, we set out to do some filing, to take care of things like the death certificate once and for all. We filed those away in Caemon’s file, the one where we have kept his birth certificate, social security card, immunization records–all the things that we needed to prove he was a legitimate person, all landmines themselves. We stashed that folder away, knowing we didn’t need to see it anymore, and set out to tackle six months of backlogged mail and filing. In the process, we found hospital bills, articles on JMML, handbooks for bone marrow transplant, approvals for his transplant itself, lists of his medications, even birthday cards, Halloween cards, business cards for oncologists and hematologists, his little record book for his savings account, the receipt from his three-year-well child visit where he was declared a healthy three-year-old, the notes from the hematologist we met at the hospital a week later where he was declared to have leukemia. What once was the tedious task of sifting through paperwork became a day of explosions large and small, leaving us depleted and broken and riddled with shrapnel by day’s end.

We didn’t think paper filing would be so hard, but that is the nature of landmines; they’re unexpected and completely devastating. Spaces like Caemon’s room are full of stacks of visible TNT. We don’t dare open the door without bracing ourselves for the blast, but these dangers are everywhere we least expect them: the grocery store when we see his favorite yogurt or even watermelons, the bookstore with a huge display of his favorite Dr. Seuss books right next to the section on grief, our DVR where recordings of vacuum cleaner infomercials and Sesame Street episodes sit unwatched, a drawer in the kitchen where he tucked away a prize wooden spoon or whisk for easy access later, even the streets in our neighborhood where we took him to see his last Christmas lights. Our lives are strewn with these things that may one moment bring a smile to our faces and in another moment leave us crumpled and wailing.

The next month is going to be hard. We are moving to a new home without the assistance of bomb-sniffing dogs and mine-seeking robots. We’re going to have to tiptoe our way through the remnants of our son’s life–our family life–to try to forge a new beginning. We don’t yet know how we will do it, only that we must.

There is a part of me that tried to avoid all of this. When we learned Caemon had relapsed and doctors and nurses started using the word “death” about our son, I started worrying about the reminders that would lay us flat. I knew even before he died that if he did pass, our lives would be a minefield, that around ever corner, in every drawer, closet, room, and even song there would be evidence of our son’s short life, and I feared this. But I refused to spend what time I had left with my son–whether ten days or fifty years–worrying about what might happen when he died. I would consider avoiding a song for fear that it would become too loaded if he died and then turn it up louder because I would far rather bring him joy in the moment than protect myself later.

Even so, there was no protecting myself. Children are infused into every bit of their parents’ lives, and Caemon was no exception. Daily, our senses are bombarded with mementos of a life cut short, and we’re left to bandage our wounds and brace for the next hoping one day the explosives are rendered a little less powerful.