One of Caemon’s very favorite nurses (the nurse to whom we sent Caemon’s clothes) has written a beautiful blog post about our boy and our family and the clothes we sent to the orphanage. If you haven’t already, you can read it by following the link below. There are some fantastic photos of these children in some of Caemon’s clothes and others of children sporting Croc tattoos.
People often scramble for tissues on my behalf, searching purses, pockets, drawers and the like for something to dry my tears and wipe my nose. In fact, this began the day Caemon died when we received fellow mourners in our tetris-shaped “privacy” room and has not abated since. Anytime people catch my eyes glistening or voice quavering, they begin the manic search for something to daub away the pain. I hardly bother. It’s like trying to mop up after Hurricane Katrina with a Swiffer: pointless.
I prefer to allow the tears to stream down my face in whatever pace or volume necessary to get through the worst of it. Tears fall on my clothes, the ground, photos of Caemon, forming pools and paths. Where they land doesn’t concern me; I just have to get them out.
But then there’s the snot, and everyone knows what I mean. A good cry always involves snot. Perhaps this is what the tissues are for. It’s not the tears but the snot people are concerned with. I take a cue from my dead son on this one and wipe my nose when necessary on whatever is handy (a sheet or pillowcase, Timaree’s shoulder, etc.). Clearly there is some regression happening during these periods and I become a disgusting snot-nosed toddler.
Sleeves are always handy, but if I’m bare-armed, so be it. Skin is not as absorbent as a good sleeve, but no matter. Some bouts are so drenching I remove my shirt altogether and use it as a towel, wiping it all away in one utilitarian motion like a boxer between rounds, then ball it up and toss it toward something that may or may not be a hamper. I shuffle to the dresser, pull out another wearable tissue, and wait for the next onslaught.
Some cries are like soliloquies, and others are more like slave spirituals. Some lack sound entirely. Some are for him; some are for me. Each one hurts like hell. Emotionally these moments are excruciating, but the physical toll is equally taxing: back spasms, cramps, headaches, dehydration, all byproducts of the daily spitting out of bottomless sorrow. Rest between cries becomes essential.
Some days I can’t take it, not one more loathsome second of it, and so I do something to avoid a downward spiral. On a good day, I can produce something positive, like the little patio fountain I built yesterday. Its soothing babble comforts me and coaxes me outdoors. On a bad day, I can drink a bottle of wine and pass out, but then I just wake up at four a.m., get out of bed, and spend an hour crying on the sofa before returning to bed to pass out again.
At Okizu, during family bereavement camp, there was an epic three-hour-long group discussion involving 8 couples who had all lost a child to cancer. Some were pretty far out, fifteen years being the longest, and then there was us, not even 3 full months removed from Caemon’s death, and I noted the similarities and differences between how we cried. The poor men didn’t cry at all; they sat stoically while their wives wept and told their stories, most projecting a resolve to do something or make something productive out of their tragedies. The women cried more readily. I made a point to not look away when someone cried. I looked them right in the eyes and let loose my own silent tears. The staff there came prepared with strategically placed boxes of tissue every third chair, and by the end of the session, our hands clutched tattered and soggy balled-up wads of white fiber, the pitiful emblem of the “Sad Parents Club” to which we now all loathingly belong.
I remember that I once went two years without crying. At the time I felt like I had spent so much of my childhood crying that I had become impervious to life’s woes. Imagine the hubris in thinking I had seen or felt it all by nineteen! Now that I’m a seasoned crier, I know that these tears don’t come from nothing, nor are they pointless; they’re plentiful because of how profoundly I love and miss Caemon. Given this, I honor every tear as an expression of that exquisite truth. I never apologize for crying.
Safety advisory: crying in the car is great for getting it out. You can be loud, curse, wail, sing out those sad songs, and it feels safe—even freeing—but bleary eyes make for distracted driving. Pull over during the worst of it.
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.
Tonight we spoke at an event for BloodSource volunteers and donors (blood and blood products) here in Santa Rosa. We thought we would share our speech with all of you:
Thank you for inviting us to speak today.
This is our son Caemon. In this photo, he is just a few weeks shy of three years old. Only one week after this photo was taken, our family found ourselves at UCSF Children’s Hopsital where Caemon would receive his first blood, platelet, and plasma transfusions. Just one week from the time this photo was taken, we would learn Caemon had leukemia.
All last summer prior to his diagnosis, our family went on numerous adventures, from camping on the beach and hiking in the redwoods to a road trip to the Grand Canyon. Exploring the world through our son’s eyes and experiencing life with him was a singular joy; Caemon was a happy, curious boy who loved being in the world–and we loved being in it with him.
But he did get sick quite a bit: he started last year off with pneumonia, went on to develop ear infections, bronchitis, colds, flus. He seemed to always be getting sick, recovering from something, or on one antibiotic or another. We were worried, but his pediatrician didn’t seem concerned. The consensus was that kids his age get sick a lot and that his immune system was still developing.
Then came the unexplained bruises all over Caemon’s arms and legs. We tried to chalk this up to regular little boy play, but something didn’t seem right. After a reaction to an antibiotic, Caemon had a blood test, which showed something far more malicious than a developing immune system or rough and tumble child’s play. In fact, his immune system was under assault. The blood test revealed two tell-tale markers of leukemia: high white blood cell counts and very low platelets. We learned from his doctor that Caemon’s low platelet levels put him at high risk for a major bleed, so we were rushed to UCSF where our whole world would soon change.
After just a couple of days in the hospital, including a trip to the ICU, Caemon was diagnosed with juvenile myelomonocytic leukememia, or JMML. JMML is the rarest and perhaps most difficult to treat of all childhood leukemias. It affects approximately one in a million children under the age of four—30-50 kids per year in the United States—and accounts for just one percent of all childhood leukemias. As a cancer of the blood, JMML attacks the bone marrow, causing it to spit out immature white blood cells. As a result, fewer and fewer healthy cells are created, causing patients to need many transfusions of blood products throughout their course of treatment. For the majority of patients with JMML, the only chance for a cure is a bone marrow transplant, and this, we quickly learned, was Caemon’s path.
The road to transplant involved several months of waiting to find a donor, and during those months, Caemon had to undergo four rounds of chemotherapy all while staying in the hospital. For anyone, no matter the age, being confined to a hospital bed for weeks or months would be depressing, but Caemon showed us that it did not need to be so. He took an interest almost immediately in the medical procedures going on with him. One nurse gave him a stethoscope which launched him into a full blown obsession with medical supplies. When he cooperated with his medicines, vitals, or dressing changes, his nurses would reward him with a medicine dropper or a roll of medical tape. His collection quickly grew, his supplies becoming his preferred toys, and instead of a cape or other super hero gear, he liked to wear blue scrubs and a nurse’s id badge.
At the age of three, he became something of an expert on his own care. He asked what medicines were being given and why; he knew when masks and gloves needed to be worn, and eventually, the nurses trusted him so much that they allowed him to help program his own IV pumps. Caemon astounded everyone with his perfect pronunciation of “echocardiogram” or his assertion that the way to treat his disease was to “push the chemo in, and the leukemia comes out.”
During all of this, he became well acquainted with the routines of his treatment, one of which was regular transfusions of platelets. With his disease, his spleen was trapping platelets, rendering them useless in the rest of his body. Caemon required over a hundred platelet transfusions during the five and a half month course of his treatment. He was also occasionally transfused with fresh frozen plasma, and he took in over fifty units of whole blood. The blood products he received allowed Caemon’s body to tolerate the intensity of treatments he needed to bring his disease into near-remission and to prepare him for his bone marrow transplant. Following his transplant, as we waited for Caemon’s new marrow to begin producing its own blood cells, he received daily transfusions of blood and platelets to keep him safe from bleeding and life-threatening anemia. The fact is, these life-saving transfusions are a daily ritual for many children with blood cancer. Caemon’s nurses hung multiple bags of platelets, blood, and plasma each day. Trips to the blood bank happen multiple times a day on that pediatric oncology floor.
It’s important to stop and think about that for a moment. A person injured in an accident may come in to the ER requiring a couple of units of blood while doctors repair the injury and stop the bleeding. That’s what always entered my mind when I thought about blood donation—a scene right out of ER and the fight to stop someone’s bleeding. I never once pictured babies and preschoolers with cancer needing a hundred units of platelets or half as many units of blood just to get through treatment. But I know better now, and sometimes I think about all the people it took just for Caemon to receive the necessary blood products, how many people it takes to keep a fresh supply necessary to run just one oncology ward. And it’s not like we have an endless supply. There are times of the year when supplies run low, when they have to call for products out of the hospital. When Caemon was at UCSF, one such shortage required an order of platelets from Stanford, causing a delay in necessary treatment.
We are in awe of those people who regularly donate blood products, who make it a priority to do so because we have seen where that selflessness leads. Caemon ultimately lost his battle with leukemia just three months ago. However, many others will survive—and do survive–because of people just like you who go to their local blood banks and pull up their sleeves on a regular basis. You are told over and over again that each time you do this, you are saving lives, and you are, but you’re also prolonging lives of patients like Caemon so that they can receive the care they need; you’re allowing these children to have a little more childhood, giving families a little more precious time together.
No, Caemon did not live a long life, but in his short time here, our family saw, in the physical form of units of blood, platelets, and even bone marrow, physical manifestations of the generosity of the human spirit. Our son knew the depths of human kindness because of people just like you. Thank you for all you do, and thank you for hearing our story.
Yesterday, Jodi and I delivered a suitcase full of Caemon’s clothes to one of his nurse practitioners who is Tanzania-bound. Soon, we will have photos of beautiful little ones running around in his t-shirts and jeans, and it will feel good, right, comforting. It was a quick hand-off, so there was little time to really feel the enormity of what we were doing, but it weighed heavy on me throughout the day–in part because I couldn’t believe I just gave all his clothes away and in part because I knew there was more to come.
On the way home from San Francisco, we stopped at our old house to give our landlord our keys and take a final walk through our old place. Jodi and I have been in the process of moving for the past few weeks, and then last weekend, we finally had our big moving day. The last few days have been spent cleaning and finishing up at the old house as we relive memories of our boy sitting at the kitchen counter eating breakfast and drinking tea, cooking in his little kitchen, dancing around in his room, reading with us in front of the fireplace, and stealing green cherry tomatoes from our garden. That home, like Caemon’s clothes, is filled with so many memories of a seemingly healthy, certainly vibrant child. Caemon loved that house and its little yard. He loved peeking into the shed which housed not only the big lawn mower and other scary (but friendly) yard tools. (In fact, during his stay at the hospital, when we talked about going home, he talked about going to see Leaf Blower.) He loved running down the hall and the sound his feet made on the wood floors. He loved standing on his stool in the bathroom to look in the mirror and play with water. He loved locking me in my closet, shutting the door on me when I was in the garage doing laundry, locking us out when we went out the sliding door to the yard. Yes, Caemon had a naughty streak as so many children do, and it was wonderful and hilarious and perfectly suited to this beautiful family home of ours. We never intended for Caemon to live his whole life there. We wanted to buy a house in the country by the time he was five to give us all room to run and breathe and feel free, but Caemon loved our house.
Our move had been nothing short of excruciating. There was the pain of sorting through Caemon’s, things, yes, but there was also so much in packing up the life of our little family. Even packing up jars or books or tools proved painful, and knowing that we would soon not see Caemon everywhere was difficult to anticipate. Even thinking about our new home where there would be no reminders of our son was too much to bear at times.
But the truth remains that in order to start the healing process, we had to move somewhere where a fresh start might be possible, and what felt really awful at the time is that we didn’t need to consider a child at all in the process. The place where we have moved has no yard for little boys to run around. It has three sets of stairs, a hazard we would have wanted to avoid with a little one. Still, I can’t help but imagine him here exploring all the closets, checking out the cabinets, marveling at the little nook under the entryway stairs. When we moved in, somehow, an errant pair of his socks landed in that very space under those stairs, and I left it there for several days because that’s precisely the sort of thing he would have put there: socks, books, blankets, toys. It would have been his space. In fact, I think he would have liked a lot of the spaces here. Of course he would have; it’s our home now. So long as we were all together, he loved wherever we were. Even in his death, I can’t help but consider how Caemon would have liked this place, and that too has made this move so challenging.
Closing this chapter is fraught with so many feelings. There is the sadness of letting our home go and parting with a place that harbors so many beautiful memories for our family, yet there is also relief in leaving that house. The memories it harbored were beautiful, but many of them carried with them so much weight. The air there felt thick after Caemon died, and the heft of it all was suffocating. In this new place, there is no door to a boy’s room that I have to avoid. There isn’t a chair at the counter where I’d rather others not sit. There are little reminders of Caemon all over this new place, but they aren’t the same. Sometimes I go a couple of hours without thinking about him, and it’s strange, sometimes terrifying, but it’s also a necessary respite from the agony of missing him.
Yesterday before we left the old house, Jodi and I crunched through the rocks in front of our house one last time for Caemon. we admired the beautiful orange flowers of the ice plants Caemon picked out and helped me plant last spring. Then we held hands, tears streaming down our faces as we took one last glimpse of the house where our boy was once well, and we drove away, toward what I do not know.
I don’t know what our new life is going to look like here. Right now, it’s hard to see beyond the stacks of boxes and difficult to imagine what we’ll do with all of his things that we saved. I can say it feels better though. I like waking up here knowing that if I need to, I can avoid most of the triggers that send me spiraling downward. If nothing else, this place feels easier and lighter, and while it can’t take away the pain, it’s not contributing to I either. I appreciate that.
And also, much to my chagrin (and probably Caemon’s delight) I learned today that leaf blower lives here too.
The past two weeks have found me returning to a bit of work. It’s an annual job that runs for a few weeks, and I’m able to sit at home in my pajamas, use my brain a little, and get paid. It’s not a bad opportunity; in fact, the extra money is always welcome. When I received the inquiry about my participation in this year’s program, I initially scoffed at the idea of working, It was after all, just after Caemon had died. But the reality of finances began to settle in. While we have nearly paid off all of our medical expenses, and while we had enough to move, the fact that I have not worked regularly since last August is beginning to show in our bank account and has left me to try on returning to working life, even if just for a few weeks.
Honestly, I thought this would be harmless, that I could sit around and grade some exams, talk once in awhile on the phone with colleagues, and have a little bit of a mental break from the grieving without the bigger commitment of having a regular schedule or regular interactions with the outside world. While I did consider that my brain might be a bit rusty, I didn’t fathom that I might encounter people who were actually unkind or situations that completely dismissed that I am a human being going through the traumatic experience of losing a child.
That is the case in our culture though, isn’t it? Most employers don’t offer much more than a week or two for bereavement, and beyond that, we’re expected to put on our suits, dry our tears, and get back to work. Ah, but grief doesn’t work like that, does it? It pops up. I might be sitting here grading only to read a paper about a teen who feels her parents have neglected her, and I will absolutely fall apart. Or, there won’t be a reminder, only quiet, too much quiet, and I’ll remember past years when I graded while nursing a baby Caemon, while snuggling a sleepy toddler Caemon, or while watching a little boy Caemon playing on my office floor. With those memories come tears and distraction, something that doesn’t serve one well in work that requires focus and concentration.
To my surprise, I have managed to perform satisfactorily for the most part. There are days when I am a bit off, though, and on those days, I have been called out by supervisors. On one occasion, I mentioned that I was feeling off my game, that I could use some mentoring to get back on track because my son had just died. Typically, this disarms people, but in this circumstance, it seemed to make the supervisor less understanding, more critical. I burst into tears when I got off the phone. I wasn’t ready for the harsh reality of an environment where work is work and personal lives take a seat way, way in the back.
A few days later, it was my turn to do some mentoring of graders, and one of my team members was struggling. When I spoke with him, he confided that he had recently suffered some deaths in his family, and he was struggling to grade through the grief. I expressed my condolences, and offered him words of encouragement when he decided to back out of the program and return next year. When I spoke with one of the supervisors–a different one this time–I was met with similar disregard for this person’s suffering and utter relief that they had finally rid themselves of this problem grader. This problem. A grieving man. Once again, I cried when I hung up the phone.
I have worked in academia for over a decade in one way or another, and while I love intellectual pursuits, I’m beginning to see that Caemon’s death has changed me. Yes, I may very well return to academic work eventually and love it, but I don’t know. I know it feels like leading with my head is counterintuitive right now. It’s almost as if my heart won’t let me. I spend all day trying to squash my grief, pushing it back so that I can focus only to be consumed with it for the rest of the day once my work is finished. I know it won’t be like this forever, but that change in me–that desire to lead with love–that will be with me for the rest of my life, so I wonder if I even can go back to this sort of work where the head rules and the heart rides in a side car.
I’m beginning to fear the answer is no.
Of course, for now I’ve got to make a living, and I’ve got to do it whether the people I work with are understanding or not. I have decided to return to my regular job this summer where compassionate people abound, but where I am, for all intents and purposes, a brain on a computer monitor (I work in online educational support). Since Caemon was diagnosed with leukemia, however, I have been feeling a pull toward something else, toward work of the heart, something that might make a difference in people’s lives beyond their ability to successfully write an essay. I don’t know what that is going to look like, but my son changed me. He led me not to just realize but to know that I must make the most of every moment I spend on this planet.
I still don’t know if I am ready to return to work. What I do know is that I need to surround myself in people with love and empathy and be gentle and patient with myself. I have learned very quickly that when I stop honoring the grieving process, I suffer. Whatever I do, my inclination right now is to lead with my heart, to be as authentic as I can, and to be kind to myself. I suppose I should hope for the same in any future pursuits, and while the control freak in me has a hard time of just letting that be for now, I’ve got to learn to know that my right path is just ahead.
The last installment in Jodi’s series:
There are many ways to know something, depending on how loose one’s definition of “knowing” is. My mom, for example, had a feeling that I was gay, but she had no way of proving it without my confirmation. Scientists require empirical evidence or proof that something is so. To the pediatrician who finally took the time to examine Caemon, feel his enlarged liver and spleen and order a CBC, this chain of evidence gathering lead to the moment when her hypothesis was confirmed by a pediatric oncology fellow. Our son’s leukemia was no mistake. It was a reality, the “new normal.”
I knew Caemon was very sick, but I knew absolutely nothing about leukemia. I had no idea what it was, so when I walked off the elevator at the hospital for the first time and saw the “Pediatric Oncology and Bone Marrow Transplant Unit” sign, I was viscerally rocked. I did not yet know what leukemia would do to my son, but I knew cancer. My mother had died of cancer; both of my grandparents had been diagnosed with terminal cancer. I was intimately familiar with cancer and its cruelty. But its casualties were old, and in the case with my mother, she smoked heavily for many decades. She courted cancer; what had Caemon done? Two of the most difficult words to see next to each other are child and cancer; it’s sheer terror when referring to one’s own child. It’s unimaginable, incredibly surreal, and hands-down the last place in the world any parent wants to see their children.
We were torpedoed down a rabbit hole of treatments and procedures, relinquishing all control of our son to strangers who were the only ones who might save him, and I, for one, knew that they would. My knowing was such: it didn’t matter how severe his disease was because he would survive it. The Marston-Simmons family was strong enough, had enough love and fortitude to withstand anything, and we had the best medical care we could hope for. Team Caemon was strictly A-list—true believers only—and anyone who wasn’t on board with that could stay away (and some did).
When I spoke to his oncologist on the phone after his death, she asked me somewhat incredulously “Didn’t you know that last week that he was dying?” She was speaking as a scientist and doctor, and from that vantage point, when looking at his non-existent platelets and his white counts, and his x-rays, she knew he was dying, but me?
“No, I’m just a mother who was trying to save her boy,” I replied. Truthfully, I don’t know what it looks like when someone is dying, and yes, I had heard her say that he would likely die, but I also heard her say that they had a few cards left to play, and so I clung to those words, trusted in the “plan,” and dug in.
In retrospect, my “knowing” was based not on mother’s intuition or empirical data (we avoided all studies and statistics on JMML), but on something more like desperation or self-preservation; nevertheless it was as potent as any certainty belonging to those devout believers of the divine. I didn’t believe in miracles, but Caemon would prove to be the exception; he would amaze people and recover. That’s what I “knew” all the way up until the moment he died. You can imagine, then, that the ensuing shock and disbelief I felt resembled a religious zealot waking up the morning after the supposed rapture realizing he’s been wrong and that his whole philosophy/belief/dogma/whatever is completely bankrupt.
In that absence of certainty that I now find myself, I realize how little I actually know. I have spent years in academia, trading in facts and evidence, but they bear little use in my current life. The fact is that Caemon is dead, and nothing that I did or did not know, believe or not believe, trust or not, makes any difference, at least not in the outcome. As many have reminded me, however, it did make all the difference when I walked into my son’s hospital room. I may never know why he had to be taken so young or how Timaree and I will endure without him–only that we must.
And so the journey continues.