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This post is by one the bereaved dads in the Rett’s Roost community, Jon Wall.  Jon participates in the monthly virtual group that Rett’s Roost runs, and has also joined us for a retreat.  He values Rett’s Roost for helping him connect and share with other bereaved parents in those monthly groups. You can learn more about Jon and the nonprofit he helps run with his wife, Jennifer, called Zach’s Bridge, in his bio at the bottom of this post.

Jon and Jenn lost their son Zach at the age of 16 in November 2021, to a form of bone cancer, osteosarcoma. Although he originally wrote this post on January 1, 2024, thinking of the days ahead, he gave us permission to share his insights into the thoughts of a bereaved dad for Father’s Day.

These days I wonder a lot.  I wonder about the future. I wonder about the past. I wonder about the present. What would it be like, what will it be like?

Wonder permeated my brain recently from a social media post that I stumbled across with a poignant quote.  “I’m very concerned that our society is much more interested in information, than wonder.” It was from 1994 from Mr. Rogers, on the Charlie Rose show.  The quote was really about having time to reflect and think, to shut out the noise.

For me once I heard that, I’ve been fixated on the term wonder, because it’s really all I can do right now.  I’ve been off from work the past few days, spending time with Jenn, relaxing, catching up with friends and family and working on a myriad of projects around the house and for our nonprofit, Zach’s Bridge.  I’ve had time this past week to reflect and project, to think and imagine.

In general, outside of this past week I spend so much of my time focusing on information and activity, that when I have the time to really let my mind wander, meander and roam, I always come back to the same thing.

I wonder what the holiday time would be like this year. I wonder what it would have been like last year.  What will it be like next year.? As we see many of Zach’s friends and peers finishing up high school, or having already graduated and moved on, it’s an empty time for us.  I can only wonder what would be going on right now.  I wonder about the struggles, the triumphs, the mundane day to day that he could have faced.

Frequently, that wonder chokes me up for a moment, either with a memory that is stuck in the past, or an open question of the present or future.  I wonder enough to circle repeatedly around the same things.  And sometimes the wonderment blocks my ability to focus on information.  I get distracted with thoughts and visions that aren’t real, that I don’t know if they would even be true.

Zach was making so much progress in his life before he got sick.  I wonder if he would have grabbed the ring and kept on going.  I don’t know what the ring was going to be for him or if he would have been able to grab it.  The ring could have been friendships or relationships, it might not have been college, but it could have been for career that he loved – which clearly had to involve some combination fishing, cars, video games, horses and dogs – there was a glimmer of hope from a future that was at times murky at best.

This week I also stumbled across this picture of Zach. He was 10, at the Flying Horses Carousel on Martha’s Vineyard.  He was just about to grab the ring and get a free ride. Additional pictures show he grabbed it. This picture is 100% where I am, and where I will always be, stuck in the right moment before the ring grab, wondering what would have happened.  I’ll keep going around and around and around, I won’t ever be able to grab the ring, and I certainly will never know if he would have.  I can only wonder.

Let me tell you, when I let it all sink in, and I have time for reality to catch up with me, it’s still exhausting waiting for answers that will never come.  I wonder if Zach would have found a job working on a video game where fish drive cars and race against dogs on horses. I wonder if I’m always going to be in this place, just here wondering what could and would have been.   It sure feels like I will be.  I guess I can only wonder.

Jon Wall is the father of Zach, who passed away at the age of 16 in 2021 from a form of bone cancer, osteosarcoma. He misses Zach every day. With the desire to make the journey easier for families that face childhood cancer, Jon is motivated to honor Zach’s legacy by telling Zach’s story and sharing all the insight he learned from Zach. 

Jon is the Co-Founder and President of Zach’s Bridge (Facebook | Instagram) a nonprofit that helps caregivers facing late stage pediatric cancer get matched with experienced, trained peers for 1:1 support. He serves on the Pediatric Patient and Family Advisory Council (PPFAC) at Dana-Farber Cancer Institute, and helps lead a support group for pediatric Cancer Dads – Dadcology (which is delivered via Momcology).  Jon and his wife Jenn, speak frequently about childhood cancer, sharing Zach’s Rules for Life with audiences of all sizes. You can contact Jon at

When you run out of memories

I suppose if you count the months in my belly, we got to know Rett for a year and a half. It’s a terribly short time to know someone–especially someone who you love more than life. And when I think back to that time when he was physically present with us, of course the only memories that truly have stuck with me are the traumatic ones.

I know this about myself–I am cursed with a terrible long term memory. My life as a child, teen, and young adult is basically lost. The only memories that stick are the ones I have photographic evidence of (a reason I take so many pictures wherever I go now). Of course, Jim is good at reminding me of the special moments we’ve experienced together. I’m thankful for that.

Rett should have turned ten this weekend. A full decade, double digits. I see so many parents celebrating this milestone (and wishing their kid would “stop growing”). It’s no one’s fault that they feel this way, but it does hurt when I would give the world to watch Rett grow up. I see boys his age and wonder what he’d look like, what his interests would be, whether he and his sister would be best friends like she claims they would be… but I have no idea because I only got to know him for 9 months. It feels like not enough to truly know someone, even if our souls have known each other for eternity.

And now that ten years are gone my memories have faded to almost nothing, all I remember is that he suffered, greatly, and even though I have photos of him smiling and videos of him playing, the memories scourged into my mind are of him crying and hurting and dying in my arms. I’m not going to shake this off with a silver lining, “at least” statement because frankly, I think I’ve acted too strong all these years. Always coming up with some sort of beautiful meaning for his death. Acting like running Rett’s Roost was an adequate substitute for raising my son.

This weekend we had some family visit on Rett’s birthday. I wanted the day to feel meaningful, and although the sun shone brightly, and I felt good enough, it really was just an ordinary day. The only thing I could think of to honor him was to make a human 10 on the top of Mt. Agamenticus. It was silly and not really meaningful at all, but at least I have a photo of “something” we did to celebrate Rett.

I asked Jim about a cake, but we both agreed, that would be weird to sing to him (I think we’ve done it once or twice but not this time). We didn’t actually even talk about Rett at all. Jim thought maybe we’d all go around and say a memory we have of Rett’s life. But when I tried to think of something I could stay, my mind just went to all the hard days, and I thought everyone else’s mind may do the same. Instead we hugged, and knew that we were all thinking of him, but no one offered any words, we never shed a tear.

As I write this, I’m able to cry, but for some reason around others I’ve always been uncomfortable doing so. Sometimes I wish I was more emotional, to show people the reality of my loss. Every day since 2/22/15 I’ve had to choose to keep going. And what has happened is that I’ve created this image of myself as someone who has all their shit together, who walked through fire and now brings buckets of water to others, who is at peace with how their life has turned out. Lately, however, it’s started to feel like a big huge façade.

As we enter into the tenth year of Rett’s Roost’s retreats, I wonder. Can I continue being strong for others? Did I actually ever take time for my own grief, or did I just pretend all these years? I have a quote taped up on the wall behind my computer, “We rise by lifting others.” I completely agree this is true–it’s been my way of rising out of the depths of grief. I do want to keep Rett’s Roost alive, but I also realize that I’ve done a lot to honor Rett, perhaps to my own personal detriment. Maybe my anxiety and insomnia and discontent would subside if I moved on to something new. Or maybe they’d only worsen.

Let me tell you, running nonprofits is hard. Asking friends and family to continue funding this work is hard. Finding people with the passion and skills to help sustain the organization is hard. I feel burned out, my creativity fizzled, and my ambition waning. Last year was the first year we made less revenue than the year before. That feeling of losing momentum brings up so much doubt in my mind.

Every once in a while I hear from someone that they are impressed by our mission and programs. That there is nothing else like it out there (there is, but still a sweet sentiment). I know that what we offer is valuable to families, I hear it again and again from parents. And I wish we could create our retreat program in several locations around the country as people have suggested. I just have no idea how to make that happen. I feel as though I can barely keep it going here in Maine. Each year feels like a scramble to find a suitable retreat location, enough funds, and families to participate. For ten years, I have spent my days honoring Rett through the organization in his name. Yet, I don’t feel satisfied. I’m not sure I ever will because there is no way to ease the ache I feel inside without Rett.

One thing you learn when you lose a child is that you cannot control your future. You can only control how you react to the twists and turns and changes and losses. I’ve never been afraid of change and I think that’s one of my greatest attributes. But right now it feels hard to find that new motivation or spark of inspiration. I’m ready and waiting for a change right now. Ears and eyes open for a message from Rett. Do I let Rett’s Roost shrink to just offering two retreats a year, so as not to let it dissolve completely? Or do I attempt to find that person or organization that can help us bring our meaningful and healing retreat program to more and more families from coast to coast? Part of me wishes for the latter, but there is also a tired, sad, and unmotivated part of me that’s ok with letting go.

I think because I am so alert and let’s be honest, stressed, at retreats, my memories of them are still pretty clear. If you ask me what families attended one of our 30 retreats since 2015, I can remember them all. This clarity about what we’ve accomplished with Rett’s Roost reminds me that this could be my life’s work not just ten years of satiating my own grief. That giving up is not an option. Although I struggle recalling the happy memories of Rett’s life, I do truly hope we can keep making beautiful memories in his honor. I don’t want the years to pass to the point that over the next decade, Rett’s memory and name fades away completely.

As I continue to plan for this year’s retreats, I secretly hope for an obvious sign from above. Ideally, a person who knows how to help us grow and thrive. Or even a perfect location gifted to us from someone that believes in our work. Perhaps even a large donation earmarked for operational improvements. For Rett’s 10th birthday, I am putting this out there in the universe.

Are there really angels watching over us? I’m not one to pray. Even standing on my yoga mat and setting an intention has felt futile over the years. I’m a realist, grounded in the here and now. My memories blurry or unreachable. The future, an utter mystery at this point. All I can do is accept each day as it comes with a keen eye out for little nuggets of wisdom, harbingers of change, and possibly even divine messages. Whatever changes from now until Rett should be turning 20, whatever memories fade from my mind, one thing that will remain unwavering, is our love for him. No matter what happens with Rett’s Roost, that love will be our constant.

The Imprint June Left On Me

Read more of Taryn’s work at

I first noticed the tattoo on my arm during June’s treatment for neuroblastoma. I don’t remember if she was receiving chemotherapy. We were in the hospital, but which one? I can’t remember. Was it Portland or Boston? Once detailed memories are slipping away. Bleeding like an unrecognizable tattoo. Fading away into an unrecoverable abyss that is my mind.

The word tattoo is not the appropriate term for what it is I am referring to on my arm, but I like the implied permanence of the word. Tatuaje in Spanish. This is a mark. The word mark can be used to refer to a tattoo. I’ll stick with tattoo.

I don’t have any professional ink tattoos, and this is as close to one as they come for me. I’ve wanted a tattoo for as long as I can remember, but I’m as indecisive as the next person as to what I would get and where I’d place it. Indecisiveness stops me from getting a tattoo.

I fear the permanence of the ink. What’s worse is I fear the permanent ink starting to become dull and bleed into something I can no longer make out, and yet, still very much inked below my skin. No longer the crisp image it once was. I imagine touching up the tattoo one day, but then it would no longer be in its original form. For some reason, this terrifies me.

It’s the same reason a memory terrifies me. What is the original form of a memory? It’s the event. Doesn’t have to be an event. Could be a nuance, a sniffle, a look, a smile. A snapshot of any one thing that was a part of our lives. Now part of the past. A memory is made up of factors we can replay, but ultimately, details get left out. Unless we write them down, paint, draw, or photograph them, we may lose the memory. Similarly to how the tattoo will never be the same after its creation.

The details which make up a memory might linger with us for years. A scent associated with the event. The color of the sky the day she died. How smooth our favorite mug felt in our hands as we sipped morning coffee. When it comes to June, I didn’t think my memory would allow for details to drop off. What I have learned since she died is that some memories are not more loyal than others. A memory is not a moment in time we can presently return to without unintentional alteration’s regardless of who the memory is about.

The memory is of utmost importance to me because for a while I believed it was all I had left of June. However recently, I am discovering there is more.

The tattoo that I am referring to I discovered on my body several years ago is in its original form. It will grow into its potential with time. It will never disappear and the lines won’t blur. They will deepen as wrinkles do with age. The thought of this makes my body feel warm. An imprint of June that will never die.

A tattoo denoting what my body cannot forget because although time is unforgiving on the mind, it’s very giving to the body. Time gives us wrinkles. Time takes away from us too, but I prefer to focus on what time has given me. Disease took June, time did not. I look forward to what more life has to offer. I am perfecting the balance on the scale of life.

The tattoo represents what my body has endured. What I’ve survived. I am not discussing the black circles under my eyes from years of crying, although those too, I’m afraid, are now permanent.

I’ve learned in these last few years that the body moves forward with time but it is nothing without its past. Our bodies represent the culmination of life’s experiences. Individual markings on individuals. I see the tattoos all over my body when I step I out of the shower. I’m practicing noticing the marks my children have left me with gratitude and not distaste.

Caring for June was an experience that reverted me to my original form. June’s diagnosis stripped me of the outer layers I had padded myself with over the years based on who I thought I had wanted to be. When June became sick, I was reduced to my only my body and my motherhood. Everything else in life was cut away. Nothing else mattered. I became a one-dimensional snapshot of a human. A cardboard cutout. It was as if my body had forgotten my past. As if there was no future for my body. As if I became a memory of myself. Does a memory have a memory? Does a memory have a future?

When June died, she was far from her original form. The perfect baby I had given birth to only a year and a half earlier, had been altered by the toxicity of medications, chemotherapy, and surgery. Like a memory, like a tattoo, June would never again be in her original form. Still perfect, yet altered. The distance between June after chemotherapy from June before chemotherapy was obvious. The distance did not only grow between June and herself, but it was most obvious between June and her peers. The tumor robbed June of her potential to be healthy and grow like other children. The chemo robbed June of the healthy parts she had left like her hearing and fertility.

The tattoo I refer to is in the shape of lines. They can be found just above my left wrist on the inside of my arm. This skin is still some what supple because it’s the underside of my arm. There are no white spots where the melanin has died. The lines themselves look like I took a tiny X-Acto knife and made shallow cuts diagonally from the outer edge of my inner wrist up my arm. It’s a spectacular thing because I’ve never cut my arm as one would need to do to create this design. It evolved with June and with time.

I look for the symmetry on my other arm, but there is none. There are no fine lines and the skin on my right arm is bland. There is no symmetry to this tattoo. Symmetry is something a mother of a child with cancer often looks for in tiny lumps and bumps. Something a mother of a child who died of cancer looks for in herself and her living children. Symmetry doesn’t set off internal alarms. Symmetry is to be embraced. I can let go of the notion of symmetry here because I’ve finally realized the origin of this tattoo.

If you look closely, the skin on my left inner arm just above my wrist, under my watch band, looks like the skin on a snake that is about to shed. The veins give the skin a bluish hue just as a snake’s skin has before it sloughs off. The lines are connected by scales. The scales slightly less apparent than the lines. At times during June’s treatment, the mark of lines on scaly skin were bright red. It was a reflection of the time. The time I carried June.

Unlike the snake, I will not outgrow my skin. I cannot escape it although I’ve wished to. I do not need new skin to continue living. My skin may become worn out like a snake’s, but it’s the only skin I was given for this lifetime. The new me is learning to appreciate my old skin. The tattoo makes it a bit easier.

Today, a stranger may not see the tattoo from a distance. It’s not angry as it once was. I notice it in the light of the sun that shines through the window at the kitchen sink while I wash dishes. In the sunlight, it looks as if it was created with white ink. The scales become obvious. With time, this tattoo will not fade. If I had to guess, it originated when my first daughter was born. June solidified it’s existence when she was born and more so, after she became sick.

June progressed from a newborn to an infant and in that time she clung to me like an infant primate does to its mother. Initially, I was baffled, irritated, and confused by this behavior. Constantly holding June prevented me from completing daily chores and making meals. It became worrisome when I had to leave her with someone else and go to work. I’d peel her away from my body. My eldest daughter never attached to me in such a way.

June’s attachment became the natural process. I’d read articles and heard strangers whisper about how one should never constantly carry a baby around. A baby should develop independence, learn to crawl, and one day, learn to walk. June never met these milestones, but it wasn’t because I carried her.

June and I became one. She wouldn’t have it any other way. I had no choice, but to rise to the occasion. I picked her up because she needed me. Then I found out she was sick. It felt natural to continue to carry her for the rest of her life.

That is what I did.

My body will never regret not setting her down.

The tattoo on my left arm just above my wrist is the mark of June. It is made of lines created by pinched and twisted skin compressed by June’s body. For every day I carried her, the lines grew a little deeper. It’s a mark of proof that she did exist. She was right here. The mark of a memory. This arm lives to tell the story. It’s an imprint that will never be forgotten because as I age, so will my skin, so will the lines. I run my fingers over them and remember.

To remember

not that

June is no longer here.

To remember

instead that,


is never gone.

The Jarboe family at our Ferry Beach Retreat in 2022

Seeking Solace in California

Last week, our family was lucky enough to be able to travel to California over Rett’s anniversary. The last two years, we’ve taken ourselves to warmer, sunnier, greener places—an attempt to create a tradition to ease the disconcerting days that lead up to the day he died.

If you know trauma, you know it can be buried deep. And there are dates and events, songs and scents, that bring up the most painful time of your life like it is fresh and raw in your face. Although this winter in Maine has been mild, with plenty of days above freezing to frolic outdoors, it’s still a marathon to get through, especially since it’s always jaded by grief for us.

The winter Rett was sick with cancer, 2014-15, was the snowiest I can remember. Storm after storm, it was nonstop inches and frozen tundra. We watched from the hospital windows, wondering when this “storm” of our life would recede. Each time the doctors asked, “Would you like to take him home and enjoy his last days or continue with treatment?” we just pushed forward with the latter holding hope that a spring would have to come eventually. It’s what all parents would do and we have no regrets for believing that we could save him.

It wasn’t until we were turned away by both Boston Children’s and St. Jude’s—two of the very best—that we knew it was time to bring Rett home. And after he was held and kissed by every grandparent and aunt and uncle, three days after a heroic Med-flight home from Memphis, during a glorious watercolor sunset, Rett let go of this life for something spiritually superior, something we can only begin to understand as humans on Earth.

Life without Rett is hard, as anyone with a heart would expect. Each year winter comes around and the waves of emotion of these four formidable months from November to February pummel us with grief. Sadly, the holidays are riddled with painful memories and the dark days of January fill us with dread. But we push through, knowing that we’re needed by Rett’s sister, Evie, who deserves more than anything to have joyful, positive childhood experiences unencumbered by the loss of her brother.

When 2/22 finally arrives, the sense of being buried by cold and darkness starts to lift. The days are brighter, and a family trip is exactly what we need to reset our aching hearts. This year we visited with friends and then took off on our own down the central coast of California. The sadness was there, but the beauty and expansiveness of the landscape gave us space to breathe through it. The soft, green rolling hills dotted with cows and shrubs led to massive rocky cliffs with turquoise waters crashing below in a froth of intense feeling. Extreme winds blew in the day before, a sign of Rett’s natural power. And the sun kept shining for us between quick bursts of rain on the morning of his anniversary; and of course, we saw a rainbow as we drove back up the coast.

The enormity and openness of this place was the perfect container for our grief. We poured our sorrows out to make room for the beauty & peace all around us. Our work as a bereaved person is to replace grief with gratitude. And it’s not an easy practice, especially after witnessing a child die from cancer. Hope can be lost entirely, as a black cloud continues to follow you around like a shroud of grief. We wanted more than anything for Rett’s life to be significant and not just a tragedy. Rett’s Roost is the torch that carries his light.

Back in Maine, the upcoming Behold the Cold polar plunge gives us something to look forward to. I love how our community rallies every time we ask for help. It is truly a remarkable thing that I will never take for granted. It’s this power of community that can only be found here, in Rett’s home, that is the foundation of what we do. With all of you, we’re able to bring together families navigating a path towards healing and re-creating joy in their lives. And that, right there, is what keeps us moving forward year after year without our baby boy.

If Rett and all the kids fighting cancer inspire you, you can donate to my dip in the ocean this Sunday by clicking the donate button below or here:

Our Beautiful Birthday Boy

Dear Rett,

Today you would be 7 years old–Lucky 7. Seven is the number of completeness and perfection (both physical and spiritual). It is directly tied to God’s creation of all things, and is associated with a deep inward knowing–like what we saw in your eyes and your owl-like persona. In our world, you are one of the Seven Wonders and always will be.

Although you are no longer here, we’ll still take the time to celebrate you, even though it isn’t the same. Each year your birthday comes around and each year we’re blown away by how quickly time passes without you. As we watch your sister grow, you stay the same size in our hearts. We can only imagine what you would look like, how your voice would sound, how proud you’d be making us.

Please know we are ok. That we cherish and trust the signs you send us. Like last week, when I drove down to meet with our friends the Austins for an afternoon hike, the sun poured into the moon roof heading south on I-95. I felt warm and content–lucky even. Suddenly I noticed the license plate of the car in front of me… 4RT 222. I literally almost drove off the road. 4RT=For Rett, 222=the day you left this earth. Clearly you were telling us, “I’m watching over Evan Austin, I will protect him for as long as I can from that DIPG monster.” Or that’s what I like to believe.

Or yesterday, when your sister was outwardly expressing the eternal void of a bereaved sibling. Her sweet, social-emotional nature intuitively shines through during these days around your birthday and death anniversary. She cries over silly things, wants extra cuddles, and says “I love you” at least 70 times upon waking. Getting dressed after her tubby turned into spontaneous tears. As I hugged her tightly, acknowledging her grief, the fire detector nearby suddenly started blaring for absolutely no reason. “Hi Rett,” I thought. “Yes we see you. Yes we hear you.”

Last night, the eve of your birthday, was the brightest night so far this year as a Pink Super Moon filled the sky after sunset and into the early morning of April 27. You were born at 6am seven years ago and I feel the downward pull in my abdomen. The phantom limb of giving birth that any mother knows well. I know your cells are still within me–that an infinitesimal part of you lives on. And I feel utterly blessed to have carried you in my womb, nursed you at my breast, and held you for your last breath.

Your birthday buddy, your dad, feels this loss as deeply as Evie and I do. Each night he tirelessly lucubrates over his memoir of you–(he’ll love the big word, but I probably used it incorrectly)–a shrine to you his third eye’s focus, the ambient sounds of Brian Eno to pacify the intensity of this work. His discipline and determination an honorable expression of his fatherly love. He fills the chasm of your demise with words and sentences that ascend and blossom like morning glory, like the glory we felt the morning you arrived.

I will always remember fondly your first birthday–how is it we never even spent one together!?–at the monastery of Sant Benet de Montserrat in Barcelona, Spain. But I can do this sacred day no justice and prefer to share the beauty of what your dad wrote instead.

Montserrat steals our hearts more slowly, endearment swelled with every step and gaze around its sprawling crag-embedded grounds. It cuts an otherworldly stance even from afar, the mile-long tram from the mountain base bringing the monastery into ever-grander focus. An April Monday crowd makes for near-solitary walks along the trails surrounding the Abbey of Santa Maria, along which stands a series of modest shrines erected to regard the Virgin Mother, one every fifty or so yards. Beneath each are tiny trinkets or tokens of remembrance, candles melted to nubs and wax cascading off the makeshift altars. We time our hike to coincide with 12:22, the trio of threes marking the day of his death, at which point we’ll visit the closest shrine and honor his first birthday. Many have said the first will be the hardest, a warning we’ve internalized well enough to plan this cross-pond whirlwind. Though no amount of movement or views can fully thin the venom forever coursing forth: the fury we feel that he never knew the sound of people singing solely for him.     –Jim Cavan, When You Rise

We will forever know and love you, son, no matter how old we grow and how far from you we feel. Or should we instead trust the old adage, “we will meet again one day?” So that in essence, each passing day brings us not further but closer to you.

Love to eternity and back,

Your Family

A year farther gone, yet closer in Spirit

It’s been a year since we’ve posted in these Musings–which doesn’t mean that we don’t muse over our son on a daily basis. Honestly, it’s just hard to continue to write about a boy who is no longer here, and hearts that continue to be broken. Another New Year is upon us, which is just another hard day for bereaved parents (there’s at least 6 of them a year). A year farther from our child on Earth, but a year closer to being reunited after death. Morbid? Maybe. But it’s how the mind works when you’re missing one. Below is an adaptation of the letter we sent to many of our major supporters this holiday (note: it’s not all heavy-hearted)…

As time passes by, our grief continues to morph and evolve and enlighten. We are approaching year three without sweet, pensive, perfect Everett, and while we still and always will miss him beyond belief, we continue to find gratitude for the amazing people that create our Circle. Our community is what has made this a journey rather than a devolution… there are so people that genuinely care for and continue to encourage us. While the loss is tragic, the story is not a tragedy.

The start of 2017 was quite rocky for our little family. After an unfruitful move to Chicago for a couple months, we came home to southern Maine feeling discouraged and hopeless again. After that door shut, another one slammed on an opportunity in North Carolina. We felt cursed. Something about being back in New England seemed right though, and we were mindful to Rett sending us clear signs that we were meant to stay put. The roots of Rett’s Roost are in the Seacoast area of New Hampshire and Maine. No doubt, our return has been extremely positive.

This year’s summer retreats were invaluably worthwhile, once again. We started at Shilo Farm in Eliot, ME in June with three sweet families of children with cancer. It was a busy weekend that started off in the pouring rain and ended in the bright sun at Fort Foster. For us and the owners of the Eco B&B, Jonas and Amylyn, the vibe felt joyful and supportive. Fourth of July brought us back to Leyden, MA at Angels’ Rest. Here, six bereaved families gathered. The sharing circle at the opening was really strong, and each night parents stayed up late talking. Everyone opened up so much. It was truly beautiful. Two weekends later we held our first retreat with Momcology, an amazing national organization. Twelve grieving mothers connected deeply. Our last retreat took place in Waldoboro, ME at a new glamping campground called Tops’l Farm. This time, downpours made things pretty tricky… but we kept the fire burning and the spirit felt so powerful around us. At one point the last day, during our music therapy session as the sun finally emerged, a group of dragonflies descended upon us!

The Superhero 5K in October was also a huge success, raising over $20,000. We eagerly returned for a second year to Throwback Brewery, and are so thankful for all the runners and sponsors and volunteers that joined us. The summer-like day brought smiles to all the participants. Our greatest support comes from people that opt to donate monthly or annually. Even a continuous $5 donation sustains us so much over time. And to those that have raised money for us on their own—teaching yoga, running a race, selling products—that is incredibly valued too. It’s all the little things, and sometimes the big effort, from our constituents that has kept us burning bright.

What happened in between those retreats and the gathering of superheroes has not officially been announced until now. As a family, and with a lot of help and sacrifice from Deana’s parents, we were able to acquire a permanent home for Rett’s Roost in Ogunquit, ME. Over the past three years, Rett’s Roost has rented retreat spaces in various locations around Massachusetts, New Hampshire, and Maine. Most locations have not been ideal sites, either extremely remote, or when in a more desirable location, extremely expensive, especially during summer months. Securing optimal weekends (when many places rent by the week) has also been difficult.

Rett’s Roost’s mission is to create a sanctuary where families feel cared for in a peaceful, comfortable environment after often living in a hospital room for months on end on a shoestring budget while overcome by medical bills. The intention with the purchase of 22 (yes, #22, thanks Rett) Autumn River Lane in Ogunquit is to offer a cost-effective retreat space to Rett’s Roost, where we can choose any weekend we like for a retreat. A single “headquarters” also allows for retreat programming to be streamlined and optimized. The location is ideal because of its proximity to Rett’s Roost’s volunteer and donor base and because Ogunquit is an appealing and accessible town. When the opportunity rose, it became crystal clear why Rett kept shutting those doors when we tried to move. We plan to pilot three retreats in the new location next summer. Dates will be announced in January.

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The last few years on the whole have been a whirlwind for us. Since Rett came into our life, we’ve been moving in all sorts of directions, trying to stay afloat raging waters. In general, it feels like the entire universe is moving very quickly. Towards what? Who knows. But almost everyone we know is witnessing intense struggles and transitions in their own life or through the life of a beloved. Not only that, but politics, technology, gun violence, ideologies, social media, and of course cancer—it keeps accelerating! Probably Facebook’s fault–LOL.

Staying grounded, present, accepting, and forgiving is the only way in this life. Evie, now more than twice the age of Rett, is our rock. She has helped us get through another tough year with her joyful soul and sweet disposition. We are so blessed to have been gifted another child. Everything feels like it’s falling into place, finally. Jim has a new job in Portland that fills him up professionally. He’s also working on a very important project—one you’ll all be very excited about—and yes, it involves words, purposeful, melodious, delicate words. For Deana, it’s all Rett’s Roost all the time. Her passion is unwavering. Sometimes grief turns into productivity and helping others. For both of us, that has been the case. It is one way of living after loss. It is our way of keeping Rett’s spirit close.

We wish you peace and good tidings this holiday season–a heartfelt wish for a happy close to your 2017. Winter has arrived with a bitter cold snap in New England, so we’ll be taking time to hibernate and be with our closest companions, and plan for next summer’s retreats. We hope you also have time to get cozy around a fire and reflect on the big picture, set intentions, just be. Celebrate and recreate traditions. Look past the all the material things and see what truly sparkles in your life. This is what we plan to do in our new home this year, watching our little Everly Jane as she absorbs and exudes all the magic that she is. Always looking for signs of her brother through her eyes.

Wishing you love, light, and a meaningful life,

The Cavans