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Author Archives: Deana Cavan

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When you run out of memories

Posted on April 29, 2024 - 3:12 pm by

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.

Seeking Solace in California

Posted on February 28, 2023 - 11:29 am by

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: https://secure.givelively.org/donate/rett-s-roost/behold-the-cold-2023-polar-plunge/deana-cavan

Our Beautiful Birthday Boy

Posted on April 27, 2021 - 12:57 am by

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

Staying positive during scary, uncertain times

Posted on March 19, 2020 - 11:08 am by

When our son, Everett, was diagnosed with cancer in 2014, it was a shock beyond most people’s comprehension–kids don’t actually get cancer do they? And my child? How? We held onto hope like it was all we had ever known. And although there were times of complete despair, we never let that hope dwindle during those scary months of uncertainty. That’s what you do. That’s all you CAN do.

During the current global pandemic of COVID-19, our whole world is reaching for some inkling of hope. When will this end? How bad will it get? Will someone I know become dangerously ill? Or god-forbid, die? What will happen to the economy, to my savings, to my job? It’s very scary and uncertain, and I wanted to draw some parallels to what we went through as a family that experienced childhood cancer and child loss.

The first seed to plant in your mind is, “This too shall pass.” It’s a mantra that you can repeat throughout the day as you struggle to homeschool your kids, as you worry about your stock of toilet paper (or more importantly, food), as you question your sanity without social interactions. We have to nurture that seed of intention because it will grow, and bloom into gratitude…

And while “This too shall pass” doesn’t technically apply to a family that lost a child–that grief will never end–the feelings of grief do come and go, and we don’t take for granted our surviving child, this extra time with family, and the beauty of the world around us. Speaking of which, have you been outside?

If I were to give my #1 piece of advice on how to stay happy during this time, it’s just that, get outside, stay 6′ away from others, and breathe in the gorgeous spring air. Walk swiftly or slowly and just be in nature, which is actually healing during this time of lower productivity. See dolphins, swans and satellite images.

Not only that, but it will also help to…

♥ Limit your news intake. It’s everywhere, we are bombarded with fear and questionable facts online. Find a trustworthy source (preferably one based on science) and just check it once or twice a day to stay in the loop.

♥ Laugh. During stressful and serious situations, comedy helps. All the coronovirus memes going around are certainly good for a chuckle, although too much of a good thing isn’t good, so watch your time on social media too.

♥ Look after your neighbors. The act of checking in on them (keeping six feet apart, of course) will not only make them feel good, it will make you feel good and remind you that there are others for whom this predicament may be even more stressful.

♥ Support your favorite local businesses. You can buy a gift card to help the business owner now, and many restaurants are offering food pick-up options. Sign up for a paid online yoga or exercise class–most studios and gyms are doing this.

♥ Practice random acts of kindness. Send gifts & cards in the mail. Unexpected treats can be a huge pick-me-up-in times of stress. This is especially valuable to the elderly who are now in isolation in nursing homes. If you are worried about receiving germs through the mail, grab your chlorox wipes or sanitizing spray and clean it off first! Think of those who could benefit from your thoughtfulness and generosity. Then act.

♥ Take advantage of extra time. Canceled activities give us an opportunity to focus on the things we haven’t had time for. Marie Kondo your house! If you are working from home, use that commuting time to start a meditation practice.

♥ Practice gratitude. Close your day, every day, with a positive acknowledgement of something you accomplished, learned or are grateful for. It will help dilute some of the negativity you’ve absorbed and remind you that not everything that’s happening right now is bad or depressing.

♥ Remember to breathe. Put gratitude front and center. Put care into everything you do. Excess fear, stress, and worry cause harm to your system. Stay home if you can and support those in your community that can’t stay home because of their job doesn’t allow it. Stay in touch with your loved ones, stay as relaxed as possible, stay in joy whenever and for however long you can.

In closing, believe in the hope of this…

A year farther gone, yet closer in Spirit

Posted on December 31, 2017 - 9:14 pm by

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.

IMG_4712 copy2 copy

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

Posted on January 2, 2017 - 12:35 pm by

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.

wrigley

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!

The Families that Keep Blowing our Hearts Wide Open

Posted on August 11, 2016 - 8:16 pm by

I started Rett’s Roost because I heard a calling—from Rett or God or both—to heal myself through healing others. I believed that surrounding myself with families that had faced pediatric cancer like we had would somehow ease the sadness of losing Rett. And it has done just that—with each retreat my heart explodes with love. Our first retreats last summer for survivors were surprisingly joyful for Jim and me. We fed off of their hope. I’m happy and relieved to say that all nine of those kids are still thriving against cancer. Each time I hear they’re going in for a scan, my stomach tightens, my heart fills my throat—I can’t even imagine the fear (referred to as scanxiety in the cancer world) their own parents feel—because I know cancer, and I know it often rears its frightful fangs again, or if not cancer, a side effect from treatment shortens or degrades an innocent life.

After the success of our survivor retreats last summer, we felt ready to invite the families whose hope and joy was stolen from them—the ones that watched their children fight incredible battles and still had to say goodbye. One out of five will not survive five years after diagnosis—that’s the statistic. Nearly 15,000 kids diagnosed a year, and 20% of them are not cured in time. The antiquated, under-funded treatments continue to fail us time and time again.

***

So we headed to Peru, Maine to our first bereavement retreat in early July, not sure what to expect. Will the families show up? Will they think the retreat was worth their time and effort to get there? Might some of them be so sad that our attempts to bring joy back will only hurt them more? Will differences in our grieving clash? And seriously, what am I thinking running a retreat with a 4 month old?

To start the weekend off, one of our farthest flung families arrived after 16 hours of travel to voice messages calling them immediately back to Ohio—recent bloodwork indicated that their daughter had the same blood disorder as their son that died… and her counts were very low. The entire group was in shock. Aside from a joyful birthday celebration for one teen sibling, it seemed impossible to bring everyone together in any semblance of a therapeutic activity that night.

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So we were five somber families left on a peaceful pond in a slightly cramped house. I went to bed wondering if the entire weekend would be a string of disasters. I cried and asked Rett for help, and to not let my sniffles wake up his slumbering sister.

As if our children’s spirits took charge, the next day everything started to fall into place. All the therapists and volunteers showed up with their hearts on their sleeves—ready and willing to help make this retreat a success. Despite a cloudy day, the rain held off for a little outdoor yoga and counseling. We used the big barn for meetings with the medium. And with that infusion of spiritual energy, we chose to gather there later in the day for our sharing circle—by far my favorite part of the weekend.

***

The first day of our August retreat on Cape Cod was also frazzled, if not nearly as heartbreaking. One family’s flight was delayed and they ended up on a red eye instead of flying in a day early like they intended, two of our moms traveling together were not able to rent a car at the airport, one of our massage therapists was in a horrible car accident which shattered her wrist, and our social worker’s car kept stalling out in traffic on Rte 3. Rett must have been up there giggling, as I frantically arranged logistics for them all. Children’s spirits are so mischievous!

The house on the Cape was spacious and sunny and looked out to a gorgeous view of the marsh and ocean. This was the first retreat Jim and I didn’t have to cook, and although the retreat center’s food was somewhat mediocre compared to what we usually prepare, it allowed for us to really immerse in the retreat with these families, which was a huge gift. I’m still buzzing from last weekend with these families. After day one’s logistical nightmare, the time together flowed with grace.

At both retreats, deep connections—much deeper than what you might expect to be forged in three short days—emerged. After Rett passed, as most grieving people do, I read a lot about what it might be like in the spirit world. It was something I needed to believe in now—so as not to think Rett was lost into nothingness. What I learned about were soul families. That in each lifetime we connect with the same souls… to learn our lessons in earth school… to expand our consciousness. Feeling so comfortable after such a short time with these people, I immediately understood—we were brought together for a reason—we are part of the same soul family. Unfortunately, our lesson in this lifetime is to all experience child loss.

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As always, the therapists and volunteers make each retreat incredibly healing. I took a picture of Amanda, Kate, and Caitlin, who offered massage, reiki, and portrait sessions to the families. These three glowing, light haired, energetic beings each had their own enlightening experience that day that they shared with me. Amanda arrived at the retreat center early and so she spent some time meditating by one of the ponds. The moment she opened her eyes she noticed in front of her a cluster of swirling white feathers. At that point she knew our children’s spirits were guiding her. Kate and Caitlin, both drove home separately Saturday night. It was humid and rainy and both of them were fighting with the defroster to keep their windshields clear. Kate looked back in her rearview mirror at one point to see two handprint images, and Caitlin saw angel wings that wouldn’t seem to fade.

Maybe signs aren’t your thing. But we love (and need) them. Even my mother received one. On the last day as I drove back to NH, I was telling her all about the retreat on the phone. She stepped outside on her porch, and at that moment, this red butterfly wing fluttered down in front of her. Thanks Rett for showing us your love!

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***

Some of the families ask me how I created Rett’s Roost just months after Rett passed. I feel a little guilty because I know they all want to honor their kids in some similar way. I don’t exactly know what came over me. I sometimes hide my grief with my busy-ness. I don’t cry as much as other moms—another source of guilt. I’ve never been a person that holds on to the past. I have one of those “anxious about the future” personalities. I just keep pushing forward recognizing that I’m one of the unlucky parents in this world that has to get through life without one of their children, but trying not to let my broken heart stop me from living this life fully.

I wonder how the waves of grief will wash over me as the years past. As Evie nears the age of Rett’s diagnosis, I am starting to worry about how I’ll get through all those milestones that Rett never met. But her smiles and squeals and zest for life are a gift from her brother. And so we hold on to moments like this…

What’s more, Evie’s approach to Rett’s diagnosis age is all happening during a tumultuous transition in our life. Some of you may already know but Jim and I are making a big move to Chicago. We haven’t left our Seacoast home in nearly 20 years but this change was almost inevitable—Jim’s success as a writer and editor would only be stunted in NH. His talent and productivity has finally been recognized, and we could not pass up the opportunity to create a better life for our family. While saying goodbye to our friends and especially Rett and Evie’s east coast grandparents is agonizing, we know that it’s a quick flight to Boston and that our community will not be lost. Rett’s Roost will continue to run retreats and fundraisers in New England each summer and we intend to see it grow a mid-western following as well.

What I’ve learned through saying goodbye forever to Rett, and goodbye for now to our community is that life is unpredictable. My yoga studies have taught me that life is full of painful experiences, but we create our own suffering. We can choose to live in the suffering from our past or project it into our future. But truthfully, the present is all we really have control over. So I try my best to live day to day, the smiles of my living child my anchor to the moment. And when I feel the urge to plan a little for tomorrow, conjuring up those expectations that may or may not come true? I remind myself again and again, the only constant in life is change.

Love after Losing a Child

Posted on February 14, 2016 - 2:33 pm by

Last year on Valentine’s Day, we were preparing to leave for St. Jude—a final glimmer of hope for our son. Instead of going out on a date, my husband and I were at our local hospital getting a final dose of antibiotics infused into Rett hoping to protect him from a plane of germs.

I took a picture that day of him looking to heaven, and now I know he was asking his God, his ancestors, his spirit animal, for freedom from his suffering. It was one in a series of photos that would follow that week, all of which fracture my heart every time I look through them.

Rett would die eight days later after a whirlwind trip to Memphis, a torturous discovery of multiplied lesions covering a third of his lungs, a medevac flight home, and goodbye visits from all his family. As far as death goes, it couldn’t have gone better. As for our life, though, the nightmare that had started nearly 4 months before, had just cranked up another notch.

For Jim and I, and for every couple that loses a child, continuing to love each other with two broken hearts takes serious fortitude and attention. The statistics are not on our side—something like 75-80% of bereaved parents divorce (although in my experience, the percent is lower). It’s so very hard when you’re both in your own trenches of grief to support someone else. There are many ways to grieve, but if I were to categorize, what I’ve seen is that women wear it and men overcome it—neither approach being better than the other; either being healing or destructive.

So far, we have been pretty lucky at understanding each other’s methods of grieving, only encountering a few hiccups along the way. For me, I have about twenty new mom friends that I talk to regularly to keep from feeling alone in this painful world of child loss. And I purposely started Rett’s Roost so that I could continue to encounter the people and stories that make up my own journey. It is who I am—a bereaved mom willing to share, and by taking on this role, I feel as though I can continue to live a fulfilling life.

Jim, like most bereaved dads, hasn’t sought out new relationships. He has other helpful ways to work through his grief. Jim has a voice for Rett that he talks to me with daily. His bond with our dog Lucy has been taken to a whole new level. And he looks forward to making us delicious and skillful dinners most nights. He writes poetry in words and phrases that are beautifully elusive and private, while at the same time tender and expressive. His creativity extends into his work in sports-writing, where he has lost no passion or efficiency. And while we have both become somewhat more reclusive this year, he is always reminding me that we still need to go out sometimes and enjoy life.

Of course, like every couple, we argue. And while I find him to be completely irrational when the Knicks or Michigan State is losing, I could not ask for a more respectful, honest, and reasonable husband when it comes to our disagreements. One thing about being married to a writer, he knows how to communicate his thoughts; and maybe it’s his Midwestern nature, but he absolutely never holds a grudge or lets me go to bed angry.

There are waves of grief that hit us every few weeks but hopefully, not at the same time—when one of us is drowning, the other is there to rescue. He is there to hold my heart and I to hold his. Without him, I’d sink to a deeper level of loss that I cannot comprehend. We acknowledge each other’s pain as equal to our own, and that has sustained a love this year that could easily have shattered.

Today we profess our love for each other, next week we will offer that love to our son, and with that abundance of love, in early March we will welcome our daughter into this world. It is with our great loss that we continue to gain great love. To us, the only way forward is together.

The Gift of Grief

Posted on December 16, 2015 - 3:19 pm by

It’s been just about ten months since I held him in my arms–the same amount of time we got to spend with our son in this lifetime. And during this time, I’ve read a lot about grief and followed other people’s journeys through it, because I’d never really felt anything like it before, and I hoped to embrace this new life rather than fall victim to it.

Before Everett was sick, I was oblivious to this world where sadness is a normal, familiar emotion and grieving a daily ritual. I also realized that there are people out there that get it, and others that don’t. It really is that divided. And on 2/22/15, I was asked by my son to switch teams.

I don’t mean to stereotype the empathetic versus the non, but it’s almost as though my life has been in black and white this year. The important people have shifted or have been illuminated. Now when I meet or find out someone has felt great loss in their life, or even has the courage and compassion to talk about mine, I immediately feel connected to them. They get it.

Losing my only child was enlightening. I was suddenly awakened to the suffering experienced by so many, which I’ll reluctantly admit, was somewhat novel to me growing up in a white middle-class happy home.

So, I’ve accepted my new position in life. While I do have days when I break down and wish Rett was still here, I almost immediately catch myself accepting this path of grief as something valuable and meant for me.

My son gave me a gift and I really do want everyone to know what a powerful gift it is—to be content with my sadness.

I use the words content and enlightened lightly, because they are not typical for a grieving parent to say. They are big, powerful attainments in life. And I do not claim that I live this perfectly conscious life where I don’t nag my husband or wish for more money or judge a soul.

But I do want people to know that a person can live a contented, fulfilling life after an excruciating loss.

Grief is not something we should ignore or fear as a society, because it happens to almost all of us on some level. When we pin sadness against happiness, as though they are opposites, we alienate an entire population of people. We tell them that they are not normal, and that there are drugs for their “negative” feelings.

In my online support groups, I read about grieving people being told to move on. This blows my mind! We will never move on. To move on is just to mask your grief, with typically horrible implications.

But there are tools to live with grief, so that our sadness doesn’t sabotage our physical or mental health or our relationships. Instead of ignoring our pain, we can use our sadness as a catalyst to help others, to simply be a person with empathy and the willingness to experience a full spectrum of emotions.

Grief is something that accumulates in our bodies. If we don’t face it, it will materialize into other issues. Recently I found some nodules on my thyroid. These are pretty common and I am having them tested for something serious. But a friend mentioned to me that they are often found in those that are grieving. In a way, they are basically a metaphor for the lump in my throat I feel each time I want to cry.

Have I been holding back my tears? Maybe a little. I somehow read an entire eulogy to Rett at his memorial without breaking down.

I’ve read that tears are our emotional perspiration. The body has many methods of detoxing, and like sweat and elimination, weeping is one. If you are interested, here’s how. My hopefully benign, health issue has made me realize the importance of my tears and I’m trying to be better at letting them flow.

Just last night I picked up one of my favorite books I used to read Rett, “Little Owl’s Night.” Waterworks ensued, followed by a sweet, consoling husband. It was a necessary sad moment for both of us—an effective purification.

Some grievers hate this phrase, but we often say, “Rett wants us to be happy.” We can feel his smiling, playful spirit—all it takes is daily intention and attention. But he also wants us to miss and remember him too, because that is what makes us feel whole and human. Simply, another gift we treasure from our son.

Another consolation never to offer a bereaved person is, “There is a reason for their passing. God needed another angel.” Once again we stray from the norm, because we are the first to admit there is SO MUCH MEANING behind Rett’s passing. We may still question why this happened to him, but we do not question whether Rett is doing God’s work and guiding us from afar.

I am still so new at this journey. And I don’t want to make it seem like I’ve got it all figured out. Who knows what year two will be like? I’ll have Rett’s little sister to care for and be grateful about. I’ve promised myself not to let our loss affect her life negatively. But I do want her to grow up knowing that it’s ok to feel sadness. And how being an empathetic person will cultivate love and acceptance in a world that can so often be disguised in ambivalence.

Christmas will be hard. Like every parent who’s missing a child from the picture, I’ll admit that. But I recognize the gifts of empathy, acceptance, and contentment Rett has given us, to gratefully place alongside our gift of sadness. This holiday, which can be so full of magic, may you all find a few non-material, life altering presents under your tree. May the twinkle of lights, the sparkle of snowflakes, and a flickering fire remind you of the spirits that surround us with their astral energy. And finally, may you shed a few empathetic tears in revelation of grief as a ubiquitous human experience that should never be quelled.

When Suffering Empowers

Posted on October 22, 2015 - 7:10 pm by

About one year ago, we found Everett’s cancer in his liver. There were no signs of him having a health issue, until one day, I noticed his belly seemed hard and he was strangely inconsolable. We found out the type of cancer, a malignant rhabdoid tumor, is one of the rarer and most aggressive cancers found in a child under 18 months. Throughout his treatment, they kept reminding us, “You can stop treatment at any time; there probably isn’t much use.” After three cycles of chemo and a surprisingly successful liver surgery, his now-metastasized cancer had taken over one-third of his lungs and we were sent home on hospice. After just three days, it was time for him to let go of this life.

This may sound crazy, but we were one of the lucky families—only a total of 3.5 months in the hospital and just a handful of days of knowing there was no hope for him. Other cancer families with a terminal diagnosis spend a year or more in-patient watching their child suffer, and up to five years fighting off disease before they ultimately have to say goodbye to their little heroes. And while 80% of children with cancer do survive in this modern day and age of medical advancements, most of them are left with life-long chronic pain, weakened immune systems, and mental anxieties. We felt blessed our child would not endure that kind of life and his suffering did not last long.

The reality for us became trying to feel gratitude amidst our suffering. My husband, Jim, and I decided the best way to heal was to look for the light within the darkness (knowing one cannot exist without the other). When we look back, we were grateful Rett was comfortable and peaceful during his last hours. There was no medical emergency or rush to save him, we were home and got to hold him and talk him through his passing, just his mama and dada by his side. Throughout this unbearable time in our life, we were completely supported by our beautiful communities of family and friends. We didn’t have another sibling at home to help understand. And Jim and I could take time to heal after because of the financial support we received. For all those reasons, we were able to accept the loss of our child knowing it would change our lives forever—but for the better.

There was one thing I knew almost certainly after Rett was diagnosed—my career as an environmental researcher would become part of my past. But I also had taught yoga for years, and knew that I enjoyed helping people live healthier lives—both mentally and physically. Now I saw a much greater purpose to my yoga philosophy training. It’s what saved me while Rett was sick and dying. It taught me to see this time of suffering as a purposeful moment in my life, and I had the choice to let it bring me down or bring about a positive transition. I knew I wanted to share the tools that helped me stay strong and focused during this harrowing experience. And with that desire, Jim and I created a foundation in our son’s honor, Rett’s Roost.

Rett’s Roost is a new non-profit organization that supports families that have heard those heart-dropping, stomach-wrenching words, “Your child has cancer.” Or even worse, “There is nothing else we can do for your child.” Our mission is to provide a sanctuary (in the form of retreats) for entire families to live, love, and heal together. We offer therapeutic ways of healing with yoga, art, music, writing, and games that build confidence and acceptance and promote lovingkindness and mindfulness. Our first two retreats were for families in the post-treatment, recovery phase—meaning their children had stable or no evidence of disease. Our first bereavement retreat—for families that have lost a child like us—is coming in December.

It’s been nearly eight months since Rett passed and only three months since Rett’s Roost became my daily “work.” I’m proud and empowered by what Rett’s Roost is becoming. While it feels like a source of healing for me, sometimes I wonder if I’m avoiding my grief. But I simply cannot ignore the super-charged angelic force behind it all—our son Everett. He came into this life to create compassion and abundance for those who need it most. And I thank him daily for his heaven-sent support and guidance. As much as I’d prefer to have him here with us, I’m glad to be doing work that has true meaning and value. I often ask myself upon waking each morning, “What can I fill the emptiness in my heart with today?” Thankfully, with all the beautiful cancer families and generous supporters we’ve met, my heart is overflowing.

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