Spend Indigenous People’s Day weekend at Shilo Farm with your family! Connect with other bereaved families and experience fall on the farm in Maine.
In Collaboration with:
We are introducing a new style of retreat this year that still brings families that have been impacted by childhood cancer and child loss together, but does not incorporate the jam-packed schedule we offer at our larger family retreat in the summer. You’ll have more time to explore the seacoast area and choose your own adventure.
There is only space for three families to stay at Shilo Farm so we encourage you to apply early. Each family will have their own beautifully decorated bedroom and bathroom. We will offer optional activities to connect with others and to heal within–such as yoga, meditation, parent massage, a pizza party, an individual family therapy session, farm animals, and other fun activities.
Does my family qualify? For this retreat, we can accept 3 families that have lost a child to cancer. You must live within the 6 New England states or NY or NJ to apply. We cannot offer travel scholarships for this retreat. If you have attended one of our Open to Healing or Forever Retreats or the Caring for the Caring Retreat in the past, you may still qualify to attend, however, we will give priority to families that are new to Rett’s Roost.
DEI: Rett’s Roost retreats are nondenominational. We act, and ask our participants to act, without discriminating against any person or organization because of their race, age, nationality, gender, sexual orientation, or religious belief.
Note: This is a working farm with cats, a large dog, chickens, and goats. It is not recommended for families that have severe allergies or fears to animals.
Check out photos from our last mini-retreat at Shilo Farm:
A unique weekend of self-care for parents. Create space for yourself and find community amongst people who have been in your shoes.
Sponsored by:
In collaboration with:
At this retreat, we will bring together parents of children with cancer and other chronic illnesses to recharge their spirits and dive into a few deep healing techniques. Psychosocial support, that given to help meet the mental, emotional, social, and spiritual needs of patients and their families is shown to be one of the most effective strategies for processing the trauma of raising a child with cancer or other similarly treated illness. Coming together, we will foster a community of parents who are medical caregivers for their child and individually work through emotions in ways other than traditional talk therapy.
You may attend as a single parent or couple. Single people may need to share a room with another person of the same gender if not attending with their spouse. The lodging and grounds at Emery Farm is exquisite, although you may also choose to attend this event just for the day. We also will offer overflow rooms at the equally beautiful Shilo Farm that weekend.
We are thrilled to welcome back Justin Wilford from MaxLove Project and the Yes Collective!
On Saturday, dads will meet with Justin to participate in a day of therapeutic healing techniques including Internal Family Systems and Psychedelic breathwork. Moms will get their chance on Sunday to work with Justin. You can read more about these well-researched, innovative modalities below. On the opposite days, parents will have the opportunity to get a massage, take a hike at the beautiful Wagon Hill trails across the street, and participate in a yoga class.
A group dinner will be offered on Saturday night, and light breakfast and lunch is provided on the day you work with Justin. You can also purchase food at Emery Farm’s farmstand, each participant will receive a gift card.
We are so excited to have Justin Wilford join us again for this retreat. Justin is the father of Max, a 15-year survivor of Glioblastoma, and Maesie. He holds doctorates in public health (UC Irvine) and cultural geography (UCLA). He co-founded the childhood cancer nonprofit MaxLove Project with his wife Audra. He is also a cofounder of an emotional health platform called Yes Collective that focuses on Internal Family Systems-based therapeutic programming. He is a health program designer, Internal Family Systems practitioner, psychedelic medicine guide, and conscious dance DJ.
Internal Family Systems is an evidence-based, paradigm-shifting psychotherapeutic approach that today is practiced by thousands of therapists, psychologists, and psychiatrists around the world. IFS sees our minds as a system of various parts, or sub-personalities, each with its own unique perspective, emotions, and role to play in our lives. The goal of IFS is to foster harmony and healing within this internal system by establishing a compassionate and curious relationship with each part. By understanding and engaging with our internal parts, we can improve our mental, emotional, and spiritual health in profound ways.
Psychedelic breathwork (which does not use psychedelic substances) is a unique practice based in holotropic-style breathing. It opens up the body, heart, and mind to help us witness what we’ve been holding on to, compassionately release what is not ours to hold, and open us to our deeper wisdom and clarity inside. Justin will help you do this by first guiding you through meditation practices inspired by an Internal Family Systems framework. He’ll then lead you into the psychedelic breathwork, followed by an integrative journaling and processing session to close the experience. Psychedelic breathwork sessions are safe but powerful experiences for individuals who are ready for breakthroughs of greater clarity, self-compassion, and self-expression.
Free This event is free to parents that have or had a child with cancer or similar chronic illness.
Experience a meaningful week with others that understand your loss. Open yourself and your family up to healing grief in new ways.
Sponsored by:
At Rett’s Roost, we show people ways to experience moments of joy & gratitude amidst their grief. While we cannot hope to relieve your grief in just a few days, our goal is to change your course toward healing even if you cannot yet see how that might be possible. We hope you leave feeling less alone in this lonely world of child loss, with tools in your back pocket and friends to call on for when you enter those dark spaces of grief.
What to expect: Rett’s Roost will be hosting up to 8 families at Rolling Ridge Retreat Centerfrom Saturday through Wednesday, providing nearly four full days of therapeutic support and connecting with others.
Prior to the retreat, parents will meet on zoom for a story-sharing session in May or June. This allows people to feel more comfortable coming together in-person in the summer already having met online.
Besides plenty of time to relax at the retreat, we offer activities that allow you to share with others and heal within. The agenda will include grief support, yoga, art, and music for both parents and children. Also, get a massage, energy treatment, and have professional family portraits taken. Kids activities are provided by Sage’s Entertainment, Curious Creatures, Ironstone Farm, and other wonderful collaborators.
At Rolling Ridge, each family will have their own bedroom and bathroom. A handicap-accessible room is available–please request early. The Rolling Ridge staff will be providing delicious, healthy meals & snacks in their dining room.
Does my family qualify? For this retreat, we will accept up to 8 families that have lost a child under 20 to cancer or other chronic medical illness. We also are now opening up our retreats to families that lost a child (6 months to age 19) suddenly that live within 2 hours drive of our heart-quarters in Ogunquit, ME. There is no restriction on the amount of time since your child’s death. Our retreats are best suited for children between the ages of 4-16, however, we do welcome families with older and younger children. Unfortunately, we cannot accept parents that lost their only child or only have surviving children older than 18 at this retreat (please see our parent only retreats in April and November). Limited travel scholarships are available by request.
DEI: Rett’s Roost retreats are nondenominational. We act, and ask our participants to act, without discriminating against any person or organization because of their race, age, nationality, gender, sexual orientation, or religious belief.
Oceanwood Camp & Conference Center – Ocean Park, ME
July 27
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3:30 pm
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July 31
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11:00 am
Join us this summer to connect and heal with other families that have a child recovering from cancer.
Kids activities provided by the amazing counselors from:
We understand that when a child is diagnosed with cancer, the burden befalls the entire family. Parents, siblings, pets, and loved ones experience a great deal of stress, sadness, and pain. The seemingly endless treatments, surgeries and scans can leave the patient and family feeling anxious, vulnerable, even defeated. But we also know that the fight against cancer can also be an empowering one, especially for survivors.
At Rett’s Roost, we hope to create a joyful, fearless, empathetic space for families to relax, renew, and lament after months or years in a hospital environment. We focus on mindful, positive living through healthy bodies, minds, and spirits. Our hope is to offer families facing the post-treatment world ways to ease their anxieties for the future, reintegrate back into their pre-cancer lives, and find moments of joy and gratitude in their daily lives.
Retreat details: Eight families are invited to join this carefully curated, healing retreat taking place at Oceanwood Camp & Conference Center in Ocean Park, ME. Each family will have their own rustic, clean cabin. Each cabin has its own bathroom. Oceanpark staff will be providing delicious, healthy meals & snacks in their dining room. We will have full days of optional activities to connect with others and to heal within, such as art, music, yoga, games, and nature experiences.
Does my family qualify? For this retreat, we accept families that have a child who has been through cancer treatment and currently is NED (no evidence of disease or on maintenance treatment) or has stable disease (with minimal hospitalizations). We do not have medical staff onsite for children requiring frequent interventions. Barbara Bush Children’s Hospital is 20 minutes away. You must live within the 6 New England states or NY or NJ to apply. We give out small travel stipends to those coming from over 1-hour away. Our retreats are best suited for children between the ages of 4-16, however, we do welcome families with older and younger children.
DEI: Rett’s Roost retreats are nondenominational. We act, and ask our participants to act, without discriminating against any person or organization because of their race, age, nationality, gender, sexual orientation, or religious belief.
Also be sure to check out Camp Casco’s summer programs for childhood cancer patients, survivors, and siblings in New England! Their free camps and community-building programs help kids affected by childhood cancer create lasting friendships, increase self-esteem, try new things, get silly, and have fun. All programs take place in Massachusetts and have medical professionals onsite at all times. Learn more and apply today: www.campcasco.org/programs
Spend Mother’s Day weekend at Shilo Farm with your family! Put the thoughts of cancer behind you for a fun farm experience in Maine.
In Collaboration with:
This spring, we are introducing a new style of retreat that still brings families that have been impacted by childhood cancer together, but does not incorporate the jam-packed schedule we offer at our larger family retreat in July. You’ll have more time to explore the area and choose your own adventure. We’ll be celebrating the moms and their intense love for their family this Mother’s Day weekend.
There is only space for three families to stay at Shilo Farm. Each family will have their own beautifully decorated, unique bedroom and bathroom. We will offer optional activities to connect with others and to heal within–such as yoga, parent massage, a pizza party, an individual family support sessions, farm animals, and a fun Saturday social gathering with more local Rett’s Roost families.
Does my family qualify? For this retreat, we can accept 3 families that have a child who has been through cancer treatment. We do not have medical staff onsite for children requiring frequent interventions. However, there is an emergency room within 15 minutes, Barbara Bush Children’s Hospital is 1 hour and Boston Children’s Hospital is 1.5 hrs away. You must live within the 6 New England states or NY or NJ to apply. If you have attended one of our Positively Healing Retreats or the Caring for the Caring Retreat in the past, you may still qualify to attend, however, we will give priority to families that are new to Rett’s Roost.
DEI: Rett’s Roost retreats are nondenominational. We act, and ask our participants to act, without discriminating against any person or organization because of their race, age, nationality, gender, sexual orientation, or religious belief.
Note: This is a working farm with cats, a large dog, chickens, and goats. It is not recommended for families that have severe allergies or fears to animals.
Check out photos from our last mini-retreat at Shilo Farm:
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.
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.
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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!
***
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.
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.
