Thirty Days of Caemon–Day Sixteen: The Symbols He Left

Today, we have another guest blogger, Ali, a friend and former colleague with a beautiful voice and a message I think many of you will identify with. 

This morning I shuffled to the kitchen with my toddler straddling my hip.  I mechanically grabbed a bag of bagels and was about to drop one in the toaster when he grunted and pointed, indicating that he wanted to do it himself.  He clumsily wrestled each half in the slots, pushed down the lever until it clicked, and then peered eagerly inside the toaster to watch the coils heat up.  He waved his hand over the top and told me, “ah” (hot).  When I began to walk away, and he grunted more urgently, letting me know that he intended to watch the entire toasting process from start to finish.

Remembering that it was snack-sharing day at my daughter’s school, I rummaged through the pantry and pulled down the air popper from the top shelf.   My son’s eyes lit up as I carried it to the counter.  They said, “What is this marvelous thing you’ve been hiding in there?”  We carefully poured in the kernels, and he gazed through the plastic top as they began to swirl around and around.  I could feel my own excitement begin to swell despite myself, as I anticipated his reaction.  And then the first one popped and flung itself from the machine into the bowl.  “Pah!” he shouted, grinning like a maniac.  “Yes, pop!” I told him.  We watched the bowl fill, never taking our eyes off the magical appliance.

Like many of the mothers who deeply felt his loss, I didn’t know Caemon.  I met him once when he was a baby, long before his illness would draw me into a meaningful friendship with his mother.  Despite my not being a person in his life, I have felt that I know him through the stories and photographs that have both broken and lit up my heart.  It is the eccentricities of children that always enchant me far more than their cute faces and other more obvious perfections.  Caemon’s love of appliances, his personal relationship to inanimate objects, is one of my favorite things about this boy I never met.  I will never tire of hearing about the way he danced with, cradled, nursed to health, gave names to, and befriended appliances at home, and then later in the hospital.  I loved seeing the way his mothers embraced this charming, quirky passion he had and how well they understood the deeper needs he was communicating through these “relationships” he formed.  Undoubtedly, his initial love affair was sparked by the inborn curiosity that children arrive with, (and that we often lose, sadly, in adulthood) and the simple magic they find in the flipping switches and the setting of things motion.

This morning, as I watched my son’s eyes fixate on the red hot coils of the toaster and the whirring of the popcorn maker, I realized how actually “unquirky” Caemon’s  attraction to household appliances really was.  I found myself thinking, “Yes, Caemon and August!  There is magic and mystery and even a bit of power in these appliances.  There is wonder in the world.  There is wonder right in your kitchen pantry if you just pause long enough to let it in.”

The morning that Caemon was having a stranger’s healthy marrow put into his body, I woke up at dawn and went out on the deck where I had an antique birdcage hanging.  The wisteria that grew along the railings had coiled itself around and through the birdcage in a way that was too beautiful to disrupt.  The deck faced the east where the sun was rising, and the beams of light began to shine through the cage and the cracks between the vines.  I took a few photos of it.  I thought about the profound nature of life and of dawn, and I felt blessed to be awake to see it.  I visualized Caemon’s body being flooded with light and health and comfort.  I promised myself to be mindful of each dawn, to pause for a moment when the sun rises and to remember that in life, the sunrise is really all that matters.  There is wonder in the world.  There is wonder right on your back deck if you just pause long enough to let it in.

When Caemon died, that birdcage out on the deck became very tied up with him in my mind.  Each morning it said, “Live!  Love your children! Don’t worry about trivial burdens!”  The last time I went to visit with his mothers, I got tingles when Jodi showed me the beautiful birdhouses she’s been making as she works through a grief that will never be done.  There are so many metaphors to be made from birds, birdhouses, birdcages, and it seems that there is a kind of magic in the way this imagery manifests, appears, reappears and overlaps in my life and in the spaces left by Caemon, a boy I didn’t know.

I don’t know how these things connect, and I have sat before this computer for days, trying to figure out how these pieces weave together.  There are so many ways that Caemon flutters and buzzes around my head from time to time, and they are momentary and fragmented and not neatly tied together.  He reminds me to hold my children tight, to never run from a grieving friend, to donate blood and gifts to children’s hospitals, and to stop and pause in reverence to toasters, birds and to the rising sun.   This morning he reminds me to really feel the weight of my son’s legs around my hip, to marvel at the electricity and heat running through our daily lives, and to take long moments to believe in the everyday magic of ordinary things.

Thirty Days of Caemon–Day Fifteen: Caemon in Print

There have been so many ways in which people have asked to honor our son, but one message from a dear friend shortly after he died took my breath away. She wanted our permission to use his name for a little boy in a series of books she is writing. How could we say no? Such a gift it is to see our son kept alive in the pages of her beautiful writing. But she hasn’t just kept Caemon alive through her books. As you will see, like many who loved him but didn’t know him, Caemon has wiggled his way into a number of facets of her life. Below, I share her tribute:

I never got to meet Caemon. I remember reading Timaree’s post when she revealed the secret she’d been carrying and following along as he caught up and passed his stuffed crocodile in pictures she posted. Every time I read about him, I hoped that someday we’d get our kids together to play. His death hit me deeply, which my eldest saw and asked about. I talk to him about how sad I am that Caemon’s moms don’t have him anymore. We wear our orange Take a Chomp out of Leukemia tees. The most significant effect that Caemon has had on me as a parent has been to show me how blessed I am when I am drowning in the challenges of parenting. When I’m up at three in the morning because one of my kids has wet the bed, I remember Caemon and am able to see how lucky I am. I am a better, more patient parent because of Caemon.

I still grieve that I never got to meet Caemon and am so honored that you have let me use his name in the novel I’m working on. Finding the right name for a character is tricky business, and I’d been having as much trouble thinking of a name for the first-born for the couple who started my writing career as my wife and I had finding names for our own children. When I did the math from book one to three and realized that my characters’ boy was close to three, I knew his name had to be Caemon. I’ve been surprised by how much he sneaks into scenes and am always delighted by his presence and the way he shapes the lives of the characters around him. In that way, I see his legacy alive–how powerful your boy is at shaping so many lives. That is what I want to honor.

If you would like to see what our friend is writing, check out her books here under Laina Villeneuve. Her forthcoming third book, Such Happiness as This, is the book in which Caemon will be featured. 

Thirty Days of Caemon–Day 12: I Think I Can

Today, we have a guest blogger, Poppy. I have known Poppy online for years, and we finally met in person last year. She is a beautiful spirit who has offered us so much love and support. We have asked her to write a post for our Thirty Days project because she experienced a very profound transformation as she searched for a way to honor Caemon. We hope you will read this stunning piece.

~~~

Several years ago, as I was trying to figure out how my partner and I might best go about making a baby (not an easy task for two women) I stumbled upon an online support group of sorts. These women were all like me, bought into a dream with all their hearts, trying to build families against all odds. Through our keyboards we shared our most intimate selves, taught each other, encouraged each other, celebrated victories and births and mourned shattered dreams. I knew the details of Caemon’s conception, the joys of his gestation and the magic of his birth, all via the screen of my iPad. He was part of a fierce and tight knit online tribe. He was one of OUR babies, wanted by all, celebrated by all. So, when we learned he had JMML, we were all shattered, shocked, devastated.

I admit when Caemon was sick I didn’t know what to say or do for the family. My words, my actions, my ability to give financially all seemed beyond inadequate in the shadow of what they were suffering. When Caemon died the feeling of inadequacy was magnified. I didn’t feel like I had the avenue, from hundreds of miles away, while enjoying the comfort of my own sweet children, to reach out to Timaree and Jodi and let them know just how much I cared about their boy and the loss of him.

Then one day I got a message from a fellow online tribe member, Bree. She said she was recruiting people to run a full or half marathon in honor of Caemon. Together as a team, people would raise money for the Leukemia and Lymphoma Society and train for full or half marathon events.  As she was telling me her plan on the phone I was laughing inside and thinking “She has totally got the wrong person here. I can’t run a half marathon and I have no idea how I would go about raising $2900! She’s crazy, sweet, but crazy”. For about a week I sat with her words and this idea of hers in my head. The more I thought about it, the more I wanted to do it. This would be my way to honor Caemon. This would be how I would show Timaree and Jodi that Caemon mattered to me, that they mattered to me. I called Bree, and reluctantly and with genuine fear about my ability to do what I was committing to, told her to sign me up. I was going to run 13.1 miles and go on to raise $3400 for Caemon. Me, who had never run more than 2 miles. Me who became ill at the thought of asking people for money. Me.

Over the next 5 months I trained with the Leukemia and Lymphoma Society’s Team In Training. I showed up to practices looking like a deer in headlights, completely unprepared for what lay ahead. They took me in, lifted me up, encouraged me, pushed me and taught me how to be a runner. Me, at 40 years old, a RUNNER! Each time I went out on a run with the team I amazed myself. My body got stronger, and with it, my self confidence. I was doing things I never imagined I was capable of. It was a great feeling to love my body, to learn what I was capable of, to push myself and to do all of this for a cause so dear to me.

Half way through the training season I felt amazing, stronger and more confident that I had ever been in my life. I was already running 13 miles on long runs so I decided to try to conquer a full marathon instead of the half. I sealed the deal by signing up for the San Francisco Nike Women’s full marathon and I asked Timaree and Jodi if they would meet me at the finish line. Running this race was going to be one of the hardest things I had ever done and I had no family or friends traveling to San Francisco to support me. I wanted them there.

Summer ended and race weekend arrived with the fall. I traveled from Seattle to San Francisco with my team and on race morning, stood in the dark, shivering, excited and a little terrified. The start buzzer sounded and the crowd of 30,000 surged forward, my running partner and I made our way across the start line. We ran, and ran, and ran. The miles were exhilarating, they were challenging, they were boring, they were overwhelming, they were painful, they were inspiring, they were completely exhausting both physically and emotionally. There was laughter, tears, anger, despair, elation and euphoria. I was stripped of everything I had ever known in those miles, stripped down to the very core of who I was, just my body, my brain and my soul working to get me to the finish line, and sometimes working against me, trying to get me to quit. Each time my mind or my body would try to get me to stop, my defense was thinking about Caemon and his struggle or thinking about Timaree and Jodi and the persistence and determination with which they fought. I would find strength remembering a video clip I saw of Caemon hiking in the Redwoods saying, as he tired from his efforts, “I think I can. I think I can. I think I can”. What I was doing was nothing compared to what they had been through and if they could do what they did, I could run 26.2 miles.

5 hours and 34 minutes later, with the help of my running partner, my teammates, my coaches and Caemon, Timaree and Jodi, I finally made it to the end of the race. As I came down the chute I scanned the spectators for Timaree and Jodi’s faces. When I saw them I was awash with relief. As much as I had done this for them, I needed them in that moment—it was a highly emotional experience. I had just done something that had changed me forever and they were part of it. They didn’t know it but their terrible loss had given me one of the greatest gifts of my life.

After I collected my medal I met Timaree and Jodi, for the first time face to face, and they ushered me through the process of collecting my bag and onto a train that would take us to brunch. My brain was not functioning properly, my body was completely exhausted and I was struck by the care and nurturing that they handled me with. They instinctively knew what I needed and stepped in to care for me as I struggled to regain control of my brain and body. I couldn’t help but make the connection between the way they were caring for me and the way they must have cared for Caemon. He was a blessed child.

We spent the rest of the afternoon together, with another of our friends from our internet tribe, having brunch at a cafe right around the corner from the hospital where Caemon was treated. I heard first-hand the horror, sorrow, pain, helplessness and despair of fighting his illness. I heard stories of the charming, joyful, loving boy Caemon. I sat across the table from Timaree and Jodi thinking that I had set out to do something for them and it turned out that instead, they had done something amazing for me.

Caemon’s legacy for me is the changes he has inspired me to make in my life. I am a better person today because of him. I am stronger than I ever knew, both emotionally and physically. I am still running regularly and plan to do so until I am old and grey. I still run and raise money for the Leukemia and Lymphoma Society and probably always will. I have a respect for my body that I lacked before. This body is a gift. I am grateful for it and I treat it as such. I approach new or challenging things with little or no fear now. I’ve done amazing things after all and there isn’t much I can’t do. I’ve set a beautiful example of health, dedication and determination for my kids. They run their own marathons around our house and have done several kid races. It makes me proud that they want to run like Mama. I’ve also learned to parent in a much more present and patient way. I sometimes find myself checking in with Timaree in my mind about how I’m reacting to a situation with my four year old twins and wondering if I would be proud of my choices in front of her. I understand the gift that my children are in a way I never could have before Caemon’s illness.

I am regularly grateful for the gifts the Marston-Simmons family has given me. I never met Caemon but he is part of me.

Thirty Days of Caemon–Day 7: Savoring the Sunrise

Shortly before Caemon died, a friend suggested that we put out a call for a minute focused on Caemon at sunrise, so, as some of you may remember, we put out the call to our beautiful community, and people sent sunrise photos in droves. There were sunrises shaped like crocodiles, sunrises in the fog, sunrises from atop mountains and over the ocean. And since then, people still send us photographs of the sunrise in honor of our son. To many, the sunrise will never be the same, we have been told, and so I share with you a note from the woman who started it all:

Caemon made many in his Great Circle see the sunrise a little differently. When Angela and I traveled up the mountain with Carol, to watch Caemon’s special sunrise over Sonoma, we could not have hoped any harder, prayed any harder, or loved any harder, a little boy we never even had a chance to meet. When I see the sunrise, I will forever think of Caemon, and the love I had for him in those moments.

Sunrise on “The Sunrise Minute for Caemon” day, taken by one of our nurses. You can see two nurses’ reflections in the window.

Thirty Days of Caemon–Day Six: Nurse Love, Part I

Caemon had a tremendous impact on everyone he met at UCSF, but few knew and loved him like his nurses. The relationships he formed with them are such a huge part of his legacy that one blog post is not enough to do it justice. We will likely return to this subject again before the month is over.

Nurse Amber & Nurse Caemon

We begin with Nurse Amber, a veteran RN who has spent her entire career in pediatric oncology. The day we met her, Caemon had just gotten his hospital haircut, and as a reward for being so patient and still under the clippers, we gave him his Halloween costume early: a set of royal blue scrubs with his name embroidered on the front. He was so handsome and proud with his uniform and stethoscope and name badge. We took him for a walk down the hall, and the nurses fairly swooned at the sight of him. Amber stopped in her tracks and asked “Who do we have here?” From then on, the two of them formed a tight bond; they respected each other, played together, and she was one of his first teachers when it came to learning the basics of nursing. She helped him, and us, set the tone for the remainder of our stay on 7Long. We asked her to write something about Caemon’s impact on her, and here’s what she shared. 

 
Caemon was an incredible little boy. I had heard how incredible he was and how I needed to meet him. It was my lucky day when I got to walk through his door early one morning and be his nurse.
Caemon was such an old soul who had much wisdom to impart on the world in his short time with us. His ability to manipulate his environment to make it a safe place for him, a place to learn and explore, was incredible. He took the scariest experience anyone could be put in and made it ok. He made friends with the objects around him that could have otherwise been very scary. He made his small hospital room come alive, and he brought everyone who was willing to take the time into his world that was safe and secure. He taught everyone he met a lesson on how to deal with difficult situations. His ability to understand feelings and emotions at such a young age never ceased to amaze me. He gave the best hugs, the most genuine, feel-it-in-your-heart, hugs.
It made my day to get to hear his little voice asking questions about how things worked and why things needed to happen this way or that. Then to hear him working it out with his medical toys, talking to the objects that had become friends, processing what was happening to him.
Knowing Caemon has made me a better nurse. I have used ways that Caemon dealt with being hospitalized to help other children who are battling the nasty cancer monster. I have seen these children visibly relax when I help them make friends with the machines and devices that are being used around them. I regularly think of Caemon and what he would have done in a certain situation and how that may help the child whose room I am currently in, how I can use part of that incredible little boy to help this child who is scared and worried by the unknown.
But he hasn’t only impacted my nursing life. Caemon loved the world around him, and he found joy and pleasure in the little things. He reminded me to slow down, look at the world around me, have a tea party, listen to some Jack Johnson or Lumineers while looking out the window at the trees, make some muffins and then eat them all up hot out of the oven, read a story, slow dance with the ones you love, take a drive just beauase, not just to water the garden, but to enjoy it and take wonder in all that is growing. Caemon reminded me to enjoy the everyday and take in the beauty that is the world around us. This little boy will always hold a special place in my heart. His life was far too short, but his impact on the world was enormous.

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Thirty Days of Caemon–Day Five: Caemon’s Story–Explaining the Impossible

When Caemon died, he had a number of peers who knew him, who knew he was sick and in the hospital, and the parents of these children–his cousins, his friends, even children he didn’t know–had to figure out how to tell their children about death in ways that they would understand but also in ways that wouldn’t scare them. I felt for these parents, but I was also curious about how they would do it, how they would help children Caemon’s age understand something he didn’t understand himself. Where had Caemon gone? Why wasn’t he with his moms? Could this happen to them? Honestly, these were questions we all had.

Parents in our lives shared with us the many strategies they tried to use to help their children understand Caemon’s untimely death. Two different friends told their children that they could choose a star for Caemon, and that every time they saw that star, they would be able to say hello to him. Months later, these girls still pointed out their Caemon stars. Some obviously used their spiritual beliefs to explain where Caemon had gone; others tried to help their children understand the cycle of life, that we all have lifetimes with beginnings and ends, some much shorter than others; others waited, not knowing if the time was right at all to share this loss with their children. No one was wrong. Every parent did what they needed to do to help their children navigate waters they never imagined.

We knew at Caemon’s memorial service that many of his peers would be present. In fact, we invited their parents to bring them; after all, they needed to say goodbye as much as we did. However, we also wanted to let them have a time for their own understanding of Caemon’s death–and then a time to leave and play as well. To help make this something they would understand, we entrusted a dear friend with writing a story for Caemon, and we asked her to tell the story at his service. As you will see, we asked just the right person, for this magical story was something for all of us.

We invite you to read her story, written for Caemon, here on our blog:

~~~

“Caemon’s Story” by Crystal McDougall

Once upon a time there was a boy who died.  Half of him went floating, but the other half stayed grounded. The half a boy looked with his half-a-boy eyes and he saw what he saw, and what he saw was Light.

“Who are you?” asked the half a boy.

“I am Light. You have known me your whole sweet life.  You have played in my rays and I have warmed your face every day.  Since I know you so well, I volunteered to come and collect you.”

“Where are we going?” asked the half a boy curiously.

“Wherever you want,” answered Light. “You can go anywhere and be anything.”

“Anything?!” the half a boy shouted, positively glowing with glee.

“Anything,” answered Light beaming down on him. No sooner had the half a boy thought it that click went the light and the half a boy was a….

Bird! He was a fantastic, flighty, floating, fearless, flying bird.  He swooped and soared, singing his little heart out to the wind and sky.  He gathered speed and shot straight down, so close to the ground that if Light had eyes she would have covered them.  But the half a boy pulled up just in time and went skimming over the grass so fast it tickled his belly.  He whooped and hollered and did loop-de-loops until he was very happy but very tired.  Just as he landed on a branch of a nearby tree, big wet raindrops began to fall from the sky.

“Light!” shouted the half a boy in the bird’s body.  “I have no nest to take shelter in, and flying is fun but it sure is a lot of work. Can I be something else?”

“Anything you want,” answered Light.

“Anything?!” sang the half a boy in the bird’s body.  No sooner had the half a boy in the bird’s body thought it that click went the light and the half a boy was a ….

Deer!  He was a remarkable, rambunctious, racing, radiant, running deer.  He dashed through the sweet smelling forest leaping and jumping.  He skipped over streams and splashed through brooks.  He pranced and bounced and danced his heart out, and soared over a bush so high that if Light had eyes she wouldn’t have believed them.  But after a while the half a boy in the deer’s body began to slow down.  He stopped in the middle of the sweet smelling forest and listened to the peaceful quiet. 

Then the half a boy in the deer’s body said, “Light, running is fun, but it is hard work. Can I be something else?”

 “Anything you want,” answered Light.

“Anything!?” laughed the half a boy in the deer’s body.  No sooner had he thought it that click went the light and the half a boy was a…

Crocodile! He was a sly, strong, swift, sensational, swimming crocodile.  He glided through the cool green water with ease. He zigged and zagged and dipped and dove to his heart’s content.  He whipped his powerful tail in the water and dove straight down to the bottom to settle in the mud so dark that if Light had eyes, she wouldn’t have been able to see.  The half a boy in the crocodile’s body saw many wonderful and amazing things deep down under the water.  But after a while he began to tire of swimming, and he began to wish he was some place warm and dry and safe.  He swam up, up, up and barely broke the surface so his crocodile eyes gleamed above the green water.  

The half a boy grinned his crocodile grin and said, “Light, I am very tired.  I think I would like to go home to rest now.  I want to go back to my boy body.”  Light shone down on the half a boy and if Light had eyes she would have been crying.

“I am sorry my darling half a boy, but you can never go back.  You have lived so many lives and you have grown so very much that you no longer fit into your boy body.” The half a boy looked with his half-a-boy eyes and saw what he saw and what he saw was, it was true.  He had grown so much that there was no way he would be able to fit all of his half-a-boy self back into that little boy body. 

So the half a boy turned to Light and asked bravely,” Well, where do we go from here? What’s next?”

Light kneeled down right next to that half a boy and whispered in his half a boy ear, “There’s always beyond.”

“Beyond what?” asked the half a boy.

“Beyond here.” answered Light.

“How do we get there?” asked the half a boy. “Do we fly, or run, or swim?”

“No,” answered light.  “We simply walk. Beyond is just over that hill.”

“Can we rest there?” asked the half a boy, rubbing his sleepy half-a-boy eye.

“Oh yes. In Beyond everyone can rest if they so choose, or they can run or dance or sing or do anything they ever wanted to do.”

“Anything?!” smiled the half a boy still glowing with glee.

“Anything,” answered Light, and together they walked over the hill to Beyond.

~~~

And so, you see, this story is Caemon’s legacy too–this story, which has been shared with a number of children trying to cope with death, with adults trying to grasp it themselves. Our dear Crystal gave this gift to us all.

Jodi and I are occasionally asked for resources for children facing the death of a loved one. If you find yourself in this position, you may, of course, share the link to this story. A few other books we often recommend, which, not surprisingly are wonderful for both adults and children include those listed below. Consequently, these are all books that were gifted to us shortly after Caemon’s death, and they are all books we found profoundly helpful and beautiful.

• Lifetimes: The Beautiful Way to Explain Death to Children,  by Bryan Mellonie and Robert Ingpen
• The Next Place, by Warren Hanson
• Tear Soup: A Recipe for Healing After Loss by Patricia Schwiebert

Thirty Days of Caemon–Day Four: Butterfly Wings

Shortly after Caemon was diagnosed, a remarkable woman entered our life through a dear friend. Without ever meeting us, ever speaking to us, she wanted to help, and oh how she helped. Laurie Sterner and her husband Michael run a beautiful nonprofit called The Butterfly Fund. It is an organization whose mission is: “Helping children who are at the moment, fragile as butterflies.” Originally an organization focused on children with the rare disease Epidermolysis Bullosa (EB), the Sterners’ hearts are so big that they began to help children with any number of conditions, and ours was one of them. 

We did not meet the Sterners in person until after Caemon died, but we knew them instantly, and we are so grateful to them for what they do for all the families and children who touch their hearts. We are certain Caemon would have adored them. 

Today’s installment of our Thirty Days of Caemon tribute is a letter from Laurie Sterner sharing how Caemon changed her life in some really beautiful ways. Please read on.

My little story on how Caemon changed my life.

First of all, it’s pretty remarkable- almost a divine miracle that one little boy could change the life of a 50+ year old woman especially when she never got to actually MEET this sweet little boy.
I remember my daughter Allie telling me of the cutest little baby boy who used to frequent her children’s shop in Sonoma–we would see pictures of him and his mothers on a photographer’s website and just google and ooo and ahhh at how preciously beautiful he was.

A couple years went by and this same photographer’s website shared that there was a need for prayers for this little boy. I contacted a friend of the family and asked how our foundation, The Butterfly Fund could help. We met Carol, a close friend of the family and within minutes, we became the best of friends. We worked together on fundraisers and spreading the awareness as Caemon worked on getting better from the leukemia that invaded his little body.

We didn’t get the chance to meet Caemon yet as he was undergoing the protocol of receiving a bone marrow transplant. Michael, my husband would always ask, “When do we get to go see Caemon?” and I would always reply, “When he comes home.” Well, the word sadness doesn’t even come close to describing the feeling I get when I say that we never got that chance. We never got to see Caemon–we never got to KNOW this little boy–we never got the chance to hear him laugh or see him play–we never got the chance to do anything with him.

As I sat at his beautiful and heart-wrenching memorial service ( memorial services for children will always be something in this world that will never BE right in my heart) something in me changed. A few weeks before, another one of our children at The Butterfly Fund was dying. She was a beautiful 15 year old girl named Cassie who was planning her sweet 16 party in Louisiana. I had “known” Cassie pretty well over the last 6 years, but once again, never had the chance to meet her in person. I loved this girl, and as much as I wanted to be a part of her sweet 16th birthday party, time and money and other life situations wouldn’t allow it to happen. Speaking with her father, I asked him what she really wanted for her birthday–he said, “All she wants is you here.” I explained our situation and how this could never happen.

When I walked out of the church after Caemon’s service, I vowed I would never wait to meet another one of our children here at The Butterfly Fund again. We booked our flight and spent the most AMAZING time with beautiful Cassie getting dressed up, decorating the hall and taking lots of pictures as she celebrated the most beautiful sweet 16 party ever.

Seven months later, we visited Ian in Pennsylvania who also was dying from complications from his EB. Today, Cassie and Ian, sadly, are no longer here, but the memories of our time meeting them, playing with them and hearing them laugh will last us a lifetime.

Thank you Caemon for showing us that LIFE is not about deadlines and bills to pay and all the other things that seem to take up our daily lives. I still am sorry that we never met you in person, but the LOVE you showed us guided us to be PRESENT in the THIS MOMENT called LIFE.

Love,

Laurie Sterner

We thank Laurie for sharing her story and her heart. Please visit The Butterfly Fund’s website to learn more about the work they do (you’ll also get to see a photo of Caemon in their page banner).  

A tribute posted by the Butterfly Fund on Caemon’s anniversary.

If you have a story you would like to share about Caemon’s impact on you, please send it to us either via email (cisforcrocodile@gmail.com) or via private message on our Facebook page, Caring for Caemon.

30 Days of Caemon–Day Two: Letter From a Mom

Today, we mark Day Two of our 30 Days of Caemon with a letter from a dear friend from our moms’ group, one of the angels who swooped in and took care of our lives when Caemon was diagnosed, one of the loyal and treasured friends who has helped distribute the weight of his passing. The legacy Caemon has left for her is multi-faceted, as it is for so many of us, and she describes it in the stunning letter below.

~~~

Dear Caemon,

Oh, sweet boy. How I wish I were writing this, my first letter to you, upon the occasion of a birthday or other such letter-worthy childhood achievement. Your sweet mamas have asked for stories of your impact on this world, so I hope you will forgive a lady from mommy group, who never got to know you as well in your brief, beautiful life as she has in the many months of grieving since your death, for writing to you as to a close friend. We were just getting acquainted before your leukemia was discovered, but I now count both of your mommies among my dearest of friends. And those friendships are only the first of the many ways your small-but-enormous life has twined around mine, like sly, persistent ivy, forever altering it in more ways then I will ever be able to quantify.

I have had a hard time beginning this task. I felt the weight of it, of course, and knew that if ever there were a time for picking the right words, this was it. But beyond that, embarrassingly, I was afraid to admit that I have not been changed enough by the boldness of your living, by the gut wound of your death, by the phoenix of a legacy that has sprung up across the globe ever since.

Because I still have these moments, terrible ones, when despite your loss I take my children entirely for granted. I still have times, many of them, in which I squander my time and talents on frivolous things. I am still surly and ungrateful and, above all, lazy.

But I am beginning to realize that this unsettling uneasiness of not-enough-change is not necessarily the bad thing I feared it was.

You see, thoughts of you overwhelm me when I come out of those terrible moments. In my ignorance before your diagnosis I would swat at my insufficiencies like a dozing cat twitching an ear at a fly. But now, oh, the moment immediately following one of my failures is filled with your absence from this world. And my resolve is ever-growing.

Fiona and Keith would not have half the mother they currently have without you. The evidence is myriad and ironclad.

As you may remember, you and I share a passion for music. So many of the stories your parents have told me involve your love of making and listening to music. You fell in love with the violin due to a magical volunteer who brought hers to your hospital room, and the plan was for me to be your teacher after you came home. Like my daughter, you had a musician’s compass pulling you along, and as I watch her learn her way around the violin like a nimble little monkey, I know I am watching a journey you would have taken right in step with her. No matter in what arena you would have settled on to make a living, there is no doubt that music would have remained the language of your soul.

I practice more, since your death, and with greater intent. I compose more, too. I used to compose as an indulgence, almost as a source of entertainment. Something grownup musicians struggle with is the relevance of their work. I had felt, before knowing you, that since I was unlikely to ever “make it big,” my composing was going to be only for me, a sort of lyrical diary. I am learning with your death that I can write to great purpose.

I wrote something for your parents last summer, a cello piece which has more love and true life packed into it than anything I have ever written. I wrote them a song for soprano and viola this spring, using a poem I think anyone who reads this letter will find soothing. I will include it below.
More than anything, I am learning, if not to live in the moment, then at least to stop raging against the uncertainty of the moment.

I don’t want to finish this letter. There are so many ripples of your existence that I have not yet mentioned, an unceasing ocean of impact that will always be with me. And I find that it helps to write directly to you. For the moment, for this letter, you stand before me. Small and strong and full of a blazing fire of intelligence and wit. I want to pick you up, to cradle you against my chest as I dash out into the night to bring you back to your mothers’ loving arms. To see their grieving eyes ignite to meet yours again, as they never stop hoping to do.

Please visit their dreams at just the right moments, all through their lives. Wrap your arms around their necks almost unbearably tightly and say something, so that your voice rings clearly in their ears when they awaken, so that the smell of your sweet head lingers throughout the day. It is so hard to feel loss anew after such a dream, but the rekindled imprint on the senses is worth it, especially as time goes by.

Oh, beautiful boy. I think of you each time I hear a song you loved. I think of you when I look at a teapot or a vacuum cleaner or the clothes and toys my kids have that were once yours. I think of you when my children are impish or strong-willed or full of a grace beyond their years. I think of you in my quiet moments alone and while surrounded by ferocious chaos. What is your legacy for me? It is impossible to measure, so seamlessly has it become part of who I am. Part of who I always will be.

With so much love,
Liz

P. S. Here’s that poem:

Beannacht by John O’Donohue

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.
And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.
When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

~~~

If you have a story or idea you would like to contribute to our 30 Days of Caemon tribute, please email us at cisforcrocodile@gmail.com or message us on the Caring for Caemon Facebook page.