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Wonder

Posted on June 18, 2024 - 1:11 am by

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.