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The Families that Keep Blowing our Hearts Wide Open

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.


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.


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.

The Gift of Grief

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.