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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

301 Days & A New Year

While I wouldn’t say I’m completely in tune with the spirit world, Rett continues to knock us over the head with his signs. I find it fascinating that his angelversary last year was on the full moon and his sister was born on the new moon two weeks later. Full moons are all about letting go, new moons represent new beginnings. Rett lived exactly 301 days. Today, January 2nd, 2017** is the exact day Everly turns older than Rett ever was. While I am so grateful to have a healthy child now, it just doesn’t feel like this should be an accomplishment or a day to celebrate. Instead, I look at it as another sign from above. An evolution of sorts. Time to begin again at the start of a new year. Time to resolve to change focus, change paths—and feel good about it.

His birthday, the anniversary of his death, and Christmas will come each year, but this single moment in time is one that holds a lot of power. From now on we can’t really compare Evie to Rett. The approach of this imminent day affected me a lot, as I watched my daughter grow to her brother’s last age—becoming more and more mobile  and eating all kinds of food, two things Rett never got to experience. I remember just days before Rett passed giving him a fruit smoothie, and he loved it. That made me so happy. At least he got to taste something deliciously sweet once in his life. And while he could never explore from his tower of tubes and machines and medicines, he did learn to be a pro-bouncer.

As many bereaved parents will attest, year two can be even harder than year one. I have found this to be definitively true. Despite the bundle of joyousness that is Evie Jane, and the consistent success of Rett’s Roost, the last few months have been more difficult than we ever could have expected.

Let me explain…

Last summer at our first bereavement retreat, Jim made the difficult decision to accept a job in Chicago. It was a big deal to move our family out to the Midwest, but we took the challenge in our life as a leap of hope and necessity. It seemed this was the change we needed to move forward in our grief. Jim was hired by Time, Inc/Fansided because of his edgy, eccentric style of writing, as well as his attention to detail (ie., grammar policing). We know that they were happy with his work from the beginning–writers liked him as their editor-in-chief, his officemates enjoyed his presence, and the website was getting more traffic than before.

Suddenly, however, hope all came tumbling down, after he published a piece that received a miniscule amount of troller backlash on Twitter. Without any warning, someone high up a Time Inc pulled the plug on Jim’s position. We’ll never understand why this happened, since no one at Fansided reached out to speak to Jim about why he lost the job we moved halfway across the country for after two months of honest, dedicated effort.

So as the anniversary of Rett’s diagnosis and major surgery passed for the second time, and the holidays came and went without our two year old son, we faced another major decision and transition to leave Chicago. It’s been so hard to pack up (again) and leave a city that we were really excited about making our home. The fall in Chicago was beautiful, the Cubs won the World Series, we loved our neighborhood and exploring all the other pockets of culture and delicious food. Evie, and even Lulu our dog, seemed to fit right in to an urban lifestyle.


It’s tough to look past the stream of bad luck that has cursed us ever since Rett’s cancer. Sadly, it feels like we are still living in its haze of suffering. We really don’t want to reach out to our community for more sympathy, since you’ve all given us so much of your love already. But our story must be told. Jim has stayed quiet about this loss but the pain that this huge corporation caused our family is immeasurable. And I just wish that whoever made this impulsive decision from their corner office in NYC could feel themselves the stress we have felt.

After losing Rett, I picked up my shattered heart and kept going. I started Rett’s Roost and brought another child into the world. I’ve heard so many times, “You are so strong.” While I do take that as a compliment, I know in my heart it’s not always true. This fall has been a true test of my strength and faith in goodness; I still feel beaten and bitter. I’m not any stronger than any of you. You would all have taken care of your child like we took care of Rett and you would all have carried on if you lost your child like we did. I live in a world of bereaved parents who did exactly what we have done. Sadly, we are not a rare breed (7 children die of cancer each day in the US).

I want to believe that we can create a better reality just by focusing our mindset on what we want. But, in these last two years, I’ve met so many people that are also living through tragedy and bad luck. Many of these people already live a life of good deeds and positive thinking. So, in my mind, I oscillate back and forth–observing how unfair life is and adjusting my negative reaction in the present moment to focus on a brighter future.

I’ve seen many people commenting on social media about how difficult 2016 has been. All the influential people we’ve lost and the surprising election result are universal examples; but I even feel on a personal level that the cosmos have been misaligned for most. Even though Jim has to remind me again and again, I know we are all in this together and that he and I aren’t suffering alone.

Our wonderful Rett’s Roost photographer, Caitlin, posted a Rumi quote the other day, “You have seen my descent. Now watch my rising.” I can’t say when that rising will occur, but all I can do is envision it happening now, as we embark on 2017, as our daughter continues to thrive. This significant day when Evie outlives Rett is hopefully a turning point for us. I’m trying to look at it that way. It’s also a new year, where my intention will be to create the life I want to have by shifting my perspective to what could be rather than what is not.

Our little detour in Chicago was not easy, but it was an adventure. Hopefully we can look back on it in a few years and realize that this suffering we endured was only a glitch in achieving the life we deserve. And that our efforts to be good people, with open hearts, close friends, and a modest life will eventually create an easier path forward. I am certain our family will get through this time and emerge in a place of solitude, for a while at least. Please, hold us in your hearts until we are there.

**Also, a little numerology fun on this day, 1/2/2017 = 1 + 2 + 2 + 0 + 17 = 22!

Creating Rett’s Legacy

Welcome to the Rett’s Roost blog! We know it’s a little light on content, but rest assured (Rett’s assured?), we’ll be working hard to cull a cornucopia of content—stories and observations, research articles and studies, the funny, heartwarming, and everything in between.

If you haven’t already, do be sure to peruse our website, and learn a bit more about our mission. For those who don’t know, Rett’s Roost was launched in honor of Everett Thomas Cavan, our special little boy, who passed away in February after a four-month battle with a malignant Rhabdoid tumor.

Everett’s journey has forever changed us. And while there isn’t a minute that goes by where we don’t think about him—ask for his counsel, acknowledge his various jokes and pranks, or just tell him how much we love and miss him—Rett’s Roost has imbued us with such a palpable purpose. It’s about helping families, and providing them a loving outlet for the impossibly broad spectrum of emotions that accompanies anyone’s journey through cancer.

You can learn more about our humble organization by traipsing through our tabs. (It’s fun—try it!) As you do, think about a child you know who is fighting cancer. Maybe it’s someone in your family. Maybe it’s the son or daughter of an old high-school friend. Whatever your connection, let them know about Rett’s Roost. Whether they’re looking for a relaxing, rejuvenating retreat (free of charge) or simply interested in sharing their experiences with a likeminded community, we want Rett’s Roost to have a little something for everybody.

In the meantime, be sure to check back with our blog for regular updates and information. And don’t forget to like us on Facebook and follow us on Twitter!

From all of us here at Rett’s Roost—and especially our blue-eyed spirit boy—thank you for taking the time to get to know us. Here’s hoping we can return the favor.

Much Love,

Deana (Mama) and Jim (Dada)