the beauty of bald

In eleven days’ time, I will be waking up bald in a Las Vegas hotel room. While that may sound a bit like I’m about to be the victim of some urban legend, this will, in fact, be by choice. I will be shaving my head with a group I have wanted to join for three years now: The 46 Mommas. This is a group of cancer moms who raise significant amounts of money for St. Baldrick’s through annual head shaving events. They are fierce and brave and strong and singularly motivated to end the disease that has impacted their children and far too many others. They are clearly my tribe.

No mother ever expects her own child will become that beautifully bald cancer poster kid. I certainly didn’t. I couldn’t imagine my son without his hair, but that baldness became our reality. Caemon was that child. He still is.

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The night of Caemon’s diagnosis, that first night we ever spent in a children’s hospital, I remember the hematologist complimenting Caemon’s hair. He couldn’t get over how beautiful it was. And it was beautiful–like corn silk kissed with sunshine. But I also remember wanting to tell this young doctor that he couldn’t have it, as if my protective mama bear instincts were any match for chemotherapy. I  remember that night telling my brother that as soon as Caemon’s hair started falling out, I would shave my head. He agreed that he would too. I felt a tiny spark of power in that decision on a day when I had never felt more powerless. But the head-shaving was not to be.

When Caemon’s hair did start falling out, he had what we called his “hospital haircut.” We opted to shave his head to keep the falling hair from annoying him. I offered at this time to shave my head too. After all, we had the clippers in hand, and I was ready. When I said, “Caemon, what if Mommy has a hospital haircut too?” He yelled at me. “No! I don’t want Mommy to have a hospital haircut!” I was a little surprised, but then I shouldn’t have been. Caemon had a thing about wanting me to look a certain way. There were days when I would come in from staying the night at Family House, and he would point at my various accessories: “Mommy! Take off your scarf and your headband and your jacket and your purse and your glasses!” I think he wanted me to look simple. like I did on our days at home, maybe even disheveled. I think he needed the comfort of a mom who wasn’t going to change in the midst of a world that was so unpredictable; the only constant there seemed to be change. And a mommy with a shaved head was just too much. He needed normalcy. His own freshly shorn head was too much already.

So I didn’t shave my head, but I did watch as my son’s IMG_8023haircut became less a haircut and more the signature look of a child with cancer. At first he still had a bit of stubble, his beautiful widow’s peak still framing his face. He had eyebrows and his glorious eyelashes too. But after a couple of months of his most intense chemo regimens, all of his hair was gone. He looked like a cancer patient.

Caemon didn’t like being bald. He didn’t recognize IMG_8402himself. One of his favorite nurses was a brilliant caricaturist, and he drew Caemon a portrait one night, complete with his bald head. Caemon, in a rare turn from his usual polite self, threw the picture and had a fairly epic meltdown. Later, we gathered that he didn’t like himself bald, and he confirmed this. (This same nurse would later draw a picture of Caemon with a full head of hair in our guest book at his memorial service.) There were times Caemon wanted me to take photos of him with some of the fancy machines that visited his room, and he insisted on putting a hat on for the picture. He needed so desperately to  look more like himself.

I would think abouscrubst the other kids we encountered in the hospital halls, the teenaged girls who had a much more established physical identity than my three-year-old son, and I know it had to be painful at times for them not to resemble their former selves. But there was a sense of solidarity around it too. When Caemon did finally get his first hospital haircut, we took him for a walk around the halls, and he saw other kids bald like him, and he would comment on their hospital haircuts. Some of his favorite nurses also sported bald heads, and he began to see them as kindrid spirits, asking if he could touch their heads. He needed that baldness to have meaning–not to represent illness and helplessness, but instead to symbolize something more important. His bald nurses were in control, so maybe his baldness could be power. When those nurses were in the room, it certainly was.

But baldness was still not acceptable for Mommy. I broached the subject of shaving my head more than once throughout Caemon’s treatment, thinking he might change his mind, and, selfishly, thinking it would be so much easier for my life in the hospital. He was always just as adamant that I keep my hair, and I respected that.

As strange as it may seem, after Caemon died, one of the clearest physical memories I had was of his bald head. It still is the most visceral, the most easy to recall. I kissed and stroked and held his head hundreds–maybe thousands of times–his scalp smooth, but slightly sticky. I can recall that sensation more easily than I can the feeling of his little body wrapped around me in a hug. It is at once comforting and heartbreaking.

So now, as I prepare myself for this shave, I find myself thinking that he might be mad at me if he were here. I try to imagine what an almost-seven-year-old Caemon would think. Maybe he would have gone with me. Maybe he would have shaved his own head too. Maybe, instead of being mad, he would have been proud of me. All I have are maybes, and then the memory of his protests. But I am still shaving in my son’s name, in his memory. I will say a quick hello to the clippers, maybe give them a little pat like Caemon used to do. And when I am bald, I will admire that my head is shaped like his was, and that my ears stick out like his did. And in my heart, I will stroke his sweet pate, give him a kiss, and remember why work like this must be done.

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Now, I humbly ask for you to support me in my efforts to raise some serious cash to help beat childhood cancer. St. Baldrick’s provides more funding to childhood cancer research than any other private organization. They directly fund the work Caemon’s doctors are doing with his cells, and they are committed to putting an end to childhood cancer. On a very special note, any donations to my fundraising efforts will funnel directly to Caemon’s Hero Fund for JMML research grants, and even the tiniest donation makes a significant impact. I thank you for helping me make my first shave with the 46 Mommas fruitful and memorable. To donate, you can click the link below: Timaree Marston’s 46 Mommas Fundraising Page

 

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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.

farewell, dear friend

Yesterday, a friend of mine died, a friend I never had the pleasure to meet. Three and half years ago, she began commenting on this blog. She found me through a mutual friend and followed Caemon’s story to the end. When my boy died, this woman I had never known but who wrote the most beautiful comments reached out to me. Her only son had died too, as had her husband. And so even though we were decades apart in age and oceans apart in space, we became sisters on this dark path that is grief.

When Caemon was diagnosed with cancer, I never imagined the good that could come out of it, and when he died, I certainly never thought that there could be bright spots. I have learned since that the bonds I have formed with other bereaved parents and other parents of children with cancer are some of the truest and deepest I have known.

Throughout the past few years, my friend has come to feel like family. She has sent me voice messages on my birthday, poems and letters for my son, my wife, my daughter, myself. She has shown me that grieving openly and earnestly and without apology is important. Throughout the past three years, she has grieved with me through the magic of the internet, remembering every anniversary, honoring my process, helping me see that one can live with this albatross of grief with grace. We have read one another’s writing, commented thoughtfully, offered words of comfort and warmth, and more than anything, we have understood the other.

I had dreams of traveling to Australia and finally giving her a hug, of sitting with her all night talking about our sons, crying and laughing together as I knew we would. I know I would have enjoyed her cheeky humor even more in person. I think she would have liked my own sly wit. It would have been more a meeting of long-lost friends than internet strangers, for we were two bereaved mothers, two women longing for their sons, two women so familiar with pain but unafraid to laugh, two travelers in lives that became almost too painful to bear, two survivors of the worst loss. We knew one another’s souls. But that meeting was not meant to be.

I will not be able to see my friend off in the traditional sense. I won’t be attending a memorial or visiting her grave, but I can say my goodbyes right where we said our hellos. And as much as I already miss her, and as much as I know everyone she touched misses her, I also know she has finally escaped the unrelenting suffering of her grief.

T, sweet friend, wherever you are, may you finally revel in the twinkling of those lights.

You can read T’s poem “Twinkly Lights” inspired by a post about Caemon on her own blog here

 

 

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the boy behind the glass

 

 

IMG_0017Recently, I was looking at photos on Caemon’s iPad, a gift our family gave him for his bone marrow transplant. When he received it, my budding photographer quickly found the camera function and began snapping pictures. He
photographed his feet, his hospital room, his bed, the ceiling, and now and then, he captured his gorgeous face. These images of his face, though, are usually somehow obscured. Some are blurry. Some capture only a small glimpse of him–a sleepy eye, a sly smile. And then there are these odd photos resulting from him tinkering with his camera settings, thermal images of sorts, which capture him in the midst of expressions so uniquely Caemon, moments when his lips were pursed in concentration or his grin seemed to broaden because he was in my arms. These are the pictures I want to see most. But instead of appearing true to life, they feature wild, Technicolor versions of Caemon. It’s him, but not quite. I can’t quite see my boy. IMG_0019

Three years and one month have passed since I last saw my son. Soon–in four months– Caemon will have been gone longer than he was alive, and as this reality looms, I find myself straining more and more to remember his voice, to feel his little arms around my neck, or to quickly pull his face into view

Naturally, I rely heavily on photographs and videos. Any time I find an image of him that I either haven’t seen or have scarcely seen, my breath catches. For a moment, I see a new expression on his face, an angle that may not have been captured before. I study the image, commit it to memory. It becomes one more piece of him that I can carry, one more inch of my son for me to know.IMG_0015

But I can’t quite do that with the iPad images. I have tried my hardest to edit them into normal colors or black and white or some form that is more recognizable, but to no avail. These are Andy Warhol’s version of Caemon, not the boy I birthed and held and kissed. They won’t quite let me access the nuances of those moments the photos were supposed to capture. This has plagued me for three years and one month, and any time I see those images, I strain to see him. 

I can’t help but notice that this is how so much of my memory of Caemon feels now. I can see his face, but I can never fully bring it into focus, as though I am perpetually looking at his image through foggy glass. Lately, I find that the photographs are all I can remember, and this is unsettling too. I can remember the days that were chronicled with pictures; the others are hazy, and while I am glad to remember them, I am also troubled by how much less real Caemon feels. So I challenge myself, and I challenge Jodi, and she challenges me to remember him without pictures. We recall moments. “Tell me about what you two would do when I left for work,” she will ask me, and I will piece together bits of memories of baking muffins or walking to the park until soon I am remembering a life with my son more fluently.

We do this more regularly now. “Do you remember what he looked like when he sat at the counter drinking his tea?” one of us will ask. “What about when he would make a stack of books and sit in your lap to read?” “Remind me of how he looked when we turned that cardboard box into an oven.” It’s a game we play, Jodi and I, the game of remembering our son as he was, the way only she and I knew him. Those are the memories subject to decay as our minds age, as time wields its relentless eraser. We tell these stories and invoke these images, remind one another of the tiniest details the best we can. We do it over and over in hopes that we will etch them permanently into our consciousness. But for all that work, there are still things we have both forgotten. I will try to remember a certain phrase he used, and it will be gone. I try to remember the lower register of his voice before leukemia, and it’s just beyond my reach.

He is always just beyond my reach.

I so desperately want to see him, to hear him, and oh, to smell him, but he is fading with time as he must. It would be too hard for us to keep living were we to remember him with the same detail as we did the day he died. Time must soften the edges of our boy in order to ease the pain, but isn’t this the rub? I don’t want the haziness of a soft-focused son; I want the sharp clarity of a boy still here.

Recently, Little Sister has started to notice photographs of children in our home. Naturally, among these are photos of her brother. She smiles at the images when she sees them. Just last week, she was expressing even more interest in the photos of her brother, so I carried her around looking and then stopped in our hall where our family pictures line the walls. “This is your brother Caemon,” I told her. She grinned widely, eagerly. She seemed so happy to see him, and I wept to think she wouldn’t know him, but I delighted in her joy all the same.

The next day, I wanted to show Jodi her reaction to her brother’s photos, so I took her to IMG_1099the hallway. I told Little Sister, “Let’s go look at your brother,” and her head quickly turned toward his image. Once again, she grinned broadly, cooing, giggling even. She reached her tiny baby hands toward the glass, wanting to touch him, and Jodi and I both welled with such a flurry of emotion: relief that she seems to love him even without knowing him on this plane, sadness that she doesn’t know him here and now. More than that, we keenly understood what it is to want so fiercely to touch that handsome face only for the glass, time, and the cruel, cruel reality that is Caemon’s mortality to keep him forever out of reach.

Still, there is something in her desire to reach out, something from which I can learn. Her joy doesn’t end when she cannot feel him. She continues to smile and coo and even squeal just because she can see him. Of course she continues to try, and the glass is amassing a wonderful collection of baby finger smudges as a result of this new ritual she enjoys, but she seems to revel in just being able to see him at all.  I’m trying to allow myself a similar joy, trying not to feel only a greater sense of yearning when my hand is stopped by the two-dimensional representations of a boy no longer here.

I am fortunate to even have these images of my son–vibrant, shining, alive. So long as the photos are here, I can remember that I did indeed have a son, that my daughter had a bigger brother. Time will undoubtedly continue to steal strands of his memory. He will grow more and more difficult to reach. But nothing can rob me of the way he burst my heart wide open. Nothing can erase the imprint that boy has made on me.J17J6

 

 

soaking

Every parent of a new baby has heard countless times from well-meaning strangers, “Soak it all in. It goes so fast!” Jodi and I are no exception. So often when I am out with Little Sister, strangers will admire her and will encourage me to soak in every last second of her babyhood. They are quick to remind me how quickly this time passes.

Of course, I know how quickly it passes, perhaps all too well. I know how in the blink of an eye, days and months and years slip by, and I know what it means to have the most finite stretch of hours to spend with one’s child.

I spare the well-meaning admirers my story and instead nod, with a sad, knowing smile, and reply, “Yes, I know.”

I know just how to soak it in. I know just how quickly time passes.

Lately, I have found myself holding onto Little Sister while she sleeps because she isn’t enjoying sleeping anywhere else. I’m warned by others to put her down, that she’ll never learn to sleep on her own, and I just can’t seem to do it. What if her life passes just as quickly? What if hers is a bright, brief flame like her brother’s? I know it is not healthy to live like this. I know that I have to, as Jodi puts it, parent for the long term, and for the most part, I do. It’s what we did with Caemon, even during his sickest times. But the soaking it in becomes addictive. The knowing how quickly time can pass becomes obsessive. I am trying to commit every breath to memory all while trying to cling to the moments I had with my son. It’s a fools errand in some ways, but it is also what I must do.

The funny thing is, while I do have this need to bask in these moments with my baby, it does all feel less urgent this time around. When Caemon was a baby, I was terrified of the passage of time. I dreaded his first birthday. It was all speeding by in a flash, and his whole life, I felt I was running out of time with him. My heart somehow knew I was. But for Little Sister, I don’t have that same feeling of dread. I am shocked that she is nearly five months old, but I’m not fearful. Like most parents of infants, I live almost exclusively in the now, but when I think ahead, I’m excited. I can’t wait to hear her talk. I look forward to knowing what she is thinking about. I’m eager to know her quirks and what will make her laugh uncontrollably, what will pique her curiosity. Perhaps this is a gift her brother left me. I know that there is so much good to look forward to, that there are so many moments to take in. Maybe part of me does trust that she will be here.

I suppose that has been what has kept me from writing. I have been taking in all of these delicious baby moments while I can, and I’m remembering Caemon as I do. My grief isn’t always front and center. It can’t be when I’ve got diapers to change and crying to soothe. But it’s there. It’s there, and the stories to share and the thoughts to write about flit by most days, unrecorded. Most days I’m not able to sit down and quiet my mind long enough to process my grief as I once did. For some, I imagine this looks like I have moved on, and certainly the part of me that is actively mothering again has had to in many ways. But the grieving mother is still here. I’m still shattered. I still have a gaping Caemon-shaped hole in my center.

But that Caemon-shaped hole has taught me how to love his sister so fully, to understand the true art of relishing the twinkling smile of my baby when she awakes in the morning, the sweet smell of her breath as she places wide-open-mouthed kisses on my cheek, the feeling–oh, the feeling–of my child’s sweet head resting on my chest. I don’t regret one moment I spend taking my time to know every inch and every breath of my daughter, just as I will never regret the moments I spent basking in my son’s warm laughter or his tender hugs.

Yes, I will take it all in. Yes, I know too well. It all goes far too fast.

 

 

 

 

The Caemon Marston-Simmons Hero Fund

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Today is Giving Tuesday, a day amidst all of the holiday bustle when people worldwide find ways to give of themselves. So today, we would like to share with you a way that we have been honoring Caemon, a way we can all give in Caemon’s memory.

Just a few months after Caemon died in 2013, I got in touch with a representative from St. Baldrick’s, an organization whose sole purpose is to fund pediatric cancer research, and I spoke with them about ways in which we could honor our son, one of which was a Hero Fund that would be directed to JMML research. In June of that year, Jodi shaved her head at our first St. Baldrick’s fundraiser, organized by Caemon’s uncle. A year later, we did it again, and this time one of Caemon’s oncologists joined us. With that fundraiser, we finally had enough to start our fund.

Today, we would like to unveil to you the Caemon Marston-Simmons Hero Fund. Caemon’s fund will provide grants specifically for JMML researchers as they continue to try to understand this disease. It is yet another way for Caemon to continue to make a difference, another way for him to live on.

But why should you give to St. Baldrick’s on Giving Tuesday? For us, this is personal in so many ways. You see, that same oncologist who shaved his head at our event last summer is also making some truly groundbreaking discoveries using Caemon’s own cells. You can read an article about the important work he is doing here: Rare Childhood Leukemia Reveals Surprising Genetic Secrets (note that the boy mentioned in the end of the article is, in fact, Caemon). His research is funded in large part by St. Baldrick’s grants, and his research is inspired in so many ways by our son. St. Baldrick’s continues to seek out the best researchers in pediatric oncology to ensure they have at least some of the funding they need to understand pediatric cancers.

We want to see an end to JMML–to all childhood cancers. We want these kids to have a greater chance at survival, and we know that supporting St. Baldrick’s is one way we can help ensure that happens. Please join us today in giving to St. Baldricks. Help us grow Caemon’s Hero Fund, and help us support these researchers who want to put an end to this disease.

Thank you!

The Marston-Simmons Family

 

nothing compares to this

From Jodi

Last week something pretty incredible happened, or at least I think so. I was outside doing chores, and after finishing, I entered the kitchen from the back door. I stopped and observed from the doorway. Our three month old daughter sat happily in her bouncy seat on the floor near the pantry watching Timaree bake. The room was filled with a comforting aroma, banana bread I think, baking in the oven. Music played from the iPad on the counter, “Friday, I’m in Love” by the Cure, one of her favorite bands since adolescence.

And she was singing.

My heart swelled. My breath caught.

Timaree hasn’t sang since our son died over two and a half years ago. Not in the car, not in the shower, not in church. Not at concerts. Not a note.

Grief manifests itself in so many ways, and one of them, for Timaree anyway, was the loss of her singing voice. It makes sense as music is pure emotion; it is joy and sorrow; pain and release. To sing is to feel, and in her case, to feel pain (more than she already feels).

I stood suspended in a moment I didn’t see coming, but I immediately recognized it as a significant shift. You see, Timaree and I had our concerns about certain things during her pregnancy: would we overreact to every cold and be suspicious of every bruise? Would our baby learn how to smile and laugh if we rarely smile or laugh? Would we be able to love her as much as we love our son?

Of course, some of these questions seem ridiculous now because of course we are crazily, ridiculously in love with our daughter. She makes us smile and laugh all the time—not the strained obligatory smiles we memorized for social acceptance—and our smiles are now being rewarded with big, lopsided toothless grins of her very own. Each of these smiles expands us, heals us, and brings us back to life.

And, as it seems, the music of our baby’s newly discovered laughter has returned the gift of music and singing to her mommy. Thank you baby girl. Now I get to see both of you smiling and singing, cooing and laughing, and, I can say with some certainty that absolutely nothing compares to this.