Category Archives: mourning

secrets

Below is a post written by Jodi.

I get credited with a number of positive traits like strong, capable, generous, and even inspirational. What if I told you that those are lies and you shouldn’t believe them? What if I told you that I am not at all strong, in fact that I am permanently broken and only a fraction of the person I was four years ago. What if I told you that I am sometimes incapable of even the most mundane tasks? And that what you see is what you want to see projected back. We all want to read the story of the hero who overcomes insurmountable odds, inspiring us to overcome our own sorrows and regrets, and I wanted to be that hero. For Caemon, for you, for my daughter, I have wanted to live up to that image. Fake it until you make it, I was told. I showed up to the events, stood on stages and told my son’s story again and again.

Right here on the pages of this blog I lied, or omitted the truth, and sought to project an image of strength and courage. In fact, I was losing nearly every friend I ever had for reasons I couldn’t understand; my marriage was crumbling; my hope dwindling. I drank until I could no more, and I didn’t tell you when I stopped. You might have congratulated me, but I didn’t want the attention on me.

I didn’t want to damage his legacy, my sweet Caemon. Losing almost everything wasn’t part of the story I was trying to write, but it is the truth. In all things, I wish to be truthful. Caemon was the strong one, the generous spirit, the inspirational figure, and I am just trying to be worthy of telling his story.

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four augusts

It’s hard to go much of anywhere on social media this month without seeing parents rejoicing at the end of summer and the start of a new school year–that time of year when parents get more freedom and kids are the responsibility of some other adult for at least a few hours a day. Advertisements on television, mom blogs, displays in stores all point to the same euphoric feeling of relief that parents have this time of year, counting down the days until school starts. The culminating event of all this build-up is the iconic first-day of school photo, kids all decked out in their new-school-year finery captioned by their parents’ lament: “I wish she would just stop growing.” August on social media is a minefield for the bereaved parent.

All that festive back-to-school clamor hurts for fairly obvious reasons, but for me personally, it also heralds the beginning of the darker months, the time when, four years ago, all of the outside world became a jumble of voices and lights, and I focused everything I had on saving my son, only to find that these were the last months I would share with him.

My wife’s birthday was a week ago. It was a lovely day of celebrating, but that day too is marred by the beginning of the end. Four years ago on her birthday, we had our last family photos taken–the iconic photos that have become Caemon the Legend, Caemon the Hero, Caemon, the Beautiful Boy Who Had Cancer, Caemon the Poster Child for JMML. Exactly one week following that day, August 21st, was D-Day: the anniversary of our initiation into the cancer club.

In fact, four years ago at this very moment,  Jodi and I were sitting in the hallway of the children’s oncology unit at UCSF, talking to a hematology fellow who would confirm that our son had some form of leukemia. I remember shaking so hard I could hardly sign the consent forms for the studies he was entering. It was just the beginning.

August is the keeper of so many beginnings. It holds Caemon’s first day of preschool, his first camping trip in the redwoods, but after August 21st, it held his first stay in the PICU, his first chemo, his first oncologist. After February, this is the month I dread the most. One might think, four years on now, that I should be getting over the diagnosis, that I should learn to move on, that I should place all my focus on my healthy baby girl and teaching and new hopes and dreams and somehow forget. But how can I when it’s August?

It’s August, and before I know it it will be September and his birthday, October and November and the memories of the hospital, December and his bone marrow transplant, January and his relapse, and February, the end–the end of my beautiful Caemon.

It’s August, and I don’t have my boy who should be going to school, and I am not rejoicing. It’s August, and my son did stop growing. August is just too heavy to forget.

The coming months are the hard ones for me. They bring with them so many difficult memories, and while my daughter and my imaginings of her future do certainly provide a counterweight–even respite–to some of that pain, this time of year will forever be changed for me. There will never be a back-to-school season when I don’t wonder what a seven-year-old or thirteen-year-old or college freshman Caemon might have been like. There will never be a Halloween when I don’t think of his return to the hospital in his nurse costume or a Winter Solstice when I don’t think of his transplant.

And so, with August 21st, I enter the season of missing my son more poignantly. Another year has passed since the beginning of his end, four years of Augusts without him.

 

three years, five months

Three years, five months. Three years, five months. Three years, five months. 

This has been the refrain playing in my mind since July began. Three years and five months ago, my son took his last breaths.  He has now been gone as long as he was alive: Three years and five months.

I remember talking with another mom just three months after Caemon died. Her daughter had been gone for fifteen years, and she spoke mournfully of the day she was gone longer than she was alive. I remember thinking in that moment that this was a day I would dread. It was something that would loom long in the future. Would I even manage to survive three years and five months without my son? And then longer? Years later, here I am, still living, still breathing, still remembering.

And although this day has been looming in my mind’s calendar for years now, I have had trouble with what to make of it. I can hardly grasp that this time that has gone so quickly without him was the same time he spent on this earth. It feels unreal, but then, so does his short life sometimes.

The first three years of Caemon’s life were the best of mine. He made me a mom, something I had longed for for years, showing me the expansive love that comes along with that role. And Caemon himself, oh how he lived! In the time leading up to Caemon’s diagnosis, our little family was thriving as a triad. With his illness and then death, it was like the worst of eruptions, leaving nothing but a smoldering crater where my joy, my hope, my family, my son had been.

Two years ago, Jodi and I took a trip to Crater Lake–a lake formed in the caldera of a volcano. What was once a mountain is now a crater filled with the most pristine cobalt waters. Trees and wildflowers grow around the rim of this catastrophe-turned-wonder. But Crater Lake, as beautiful as it is, was forever transformed by the eruption that created this hole.  It will never be filled with the same material. It will never again be a mountain top.

This I am learning to be true of myself. In three years and five months without my son, I have not become the person I was before. Three years and five months have not reset me. I am a mother again, but I am not the mother I was with Caemon. That smoldering crater leukemia left is filling with beautiful things, yes, but never again by my boy. And we may be a lovely family of three, but we will never be the family we were, the family we were meant to be.

This week marks three years and five months since Caemon left my arms, three years and five months since I said my final goodbyes, since I drove with my wife back to our home without our healing son in the backseat of the car, three years and five months since the worst day of my life. Such a span is far too long to live without him. That I have to keep going, that he will forever grow increasingly further from my memory’s grasp is a new sort of heartbreak.

Three years and five months were all the days that Caemon lived, and in that time, he taught me to be a mom, showed me love like I had never known, fostered in me courage and strength. For three years and five months, he brought me joy bottled up in a blonde-haired cherub and the sort of laughter and wonder and light that no earthly body could possibly contain. 

Three years and five months was not nearly enough, not for me, but for Caemon, that painfully short lifetime was all he needed–to change me, to change his world.

the joy in sorting

This week has found us signing a new rental agreement and beginning to pack up our home. We are renters for the time being, and when we moved into our current home, we moved here for Caemon. The three bedrooms, the nice little yard, the space for running around all were draws for a family with a little boy to raise. With Caemon’s death, however, we find it so impossible to be here. We keep the door to his bedroom closed at all times and only briefly step in to deposit something and then close the door.

We see him everywhere here: the dining room which houses his little play kitchen as well as our big family table where he liked to sit on a bench, the living room where he enjoyed helping to make fires in our stove or sit with me in the rocking chair reading books, the back yard where he would dig and plant and catch garter snakes and make mud pies, the kitchen where he would pull up his stool to help us make coffee or muffins or hummus and where he fell in love with all our appliances, even our garage where he liked to get into my tools or hang out with the vacuum cleaner. This place is loaded with Caemon memories, and it’s hard to leave them behind, but in order to move forward, Jodi and I need to be in a space where we don’t expect to see Caemon running toward us when we walk through the door or stumbling down the hall when he awakes in the night. We need a bit of a blank slate.

Of course, moving also pushes us into perhaps the most dreaded of activities after losing a child: the sorting of his things. Because we had put in new flooring in anticipation of Caemon’s homecoming, Caemon’s room never really came back together. His bed is not there, and there are just piles of his toys and clothes and books stacked, including all the boxes of generously donated items meant to make his year in isolation more enriching. His clothing has been in large sealed ziplock bags, which we had to use when transporting his clothing from the laundry to his room in BMT to keep dust and germs out. It has been a mess that neither of us has felt we could endure, but we knew we would have to tackle it soon, and likely with the help of many friends holding our hands through each step in the tear-soaked process.

Then came yesterday. Jodi was having a conversation with one of Caemon’s favorite nurses online. She is volunteering at an orphanage in Tanzania, and they were discussing her experience. Within minutes, Jodi was telling me that the baby home needed boys’ clothes. After a few more moments passed, we were discussing how we would get the clothes there, and within half an hour, Jodi had opened the door to Caemon’s room, pulled out a suitcase, and we were sitting on his floor, sorting through his clothes, packing them up to send to these kids who need them so much.

It all felt so right. Caemon loved it when the red suitcases came out. He loved packing for adventures, putting his clothes in the luggage, and getting ready to go. He was always “packed” long before Jodi and I, although usually this meant he had packed his whole shirt drawer, an air pump, a stack of books, and a few pairs of my socks. He would have loved the idea of packing his things to go on an adventure, and so this is the spirit with which we approached what we thought would be the most unbearable task.

Caemon packing for a mini adventure.

Caemon packing for a mini adventure.

Naturally, there were items we wanted to keep, items we wanted to give to people we know, but having a purpose for Caemon’s clothes and knowing we would soon see photos of beautiful children wearing them, that they would be worn and worn and worn just felt so good. Knowing that Jodi and I–two moms without a child–were sending clothes to kids who don’t have parents felt positively right.

There are still plenty of his things to sort through. Some of them we’ll sell at a moving sale in a couple of weeks, others we will hold for future children or gifts for kids we know, and certainly plenty of the new toys we will donate to the sorts of groups who donated them to us. His books we’ll keep–every last one of them because if you know what bibliophiles we are, you know that parting with a well-established library is virtually impossible. But it’s happening. The sorting, the distributing, the lightening of our burden is happening just as it should.

I’m surprised that so far this hasn’t been an impossible task, that there is, in fact, some joy to be found in discovering Caemon’s treasures all over again. Yesterday, we found his stash of flashlights from the hospital, teddy bears that were covered in bandaids and various types of medical tape, even a couple of packets of “soothing Cavilon.” We rediscovered his “fellas”–the funny group of stuffed animals with which he used to have tea parties. We found artwork of Caemon’s, the music he so loved, and his beloved guitar. Discovering each of these helped me find some joy through the tears. It helped me remember my son for precisely the wondrous child he was, and in that, I discovered a little bit of healing. We are by no means finished, but I am finding myself looking forward to spending more time in Caemon’s room seeing the little details of my quirky Caemon, sending more bits of his life out on adventures, and cherishing the many sweet memories of my beautiful boy.

I know that there are going to be some more difficult moments, but cleaning up a child’s room is the work of motherhood. We fold clothes, place toys in their right places, and put books on shelves. We pack up the clothes that don’t fit anymore and sort through the toys, and when I look at this work through this lens, it is all so very natural: returning to these simple, almost automatic tasks, I’m allowed to remember a piece of myself I have been mourning as well, and that is such a gift.