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Wonder

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.

The Imprint June Left On Me

Read more of Taryn’s work at https://carryingjune.com/

I first noticed the tattoo on my arm during June’s treatment for neuroblastoma. I don’t remember if she was receiving chemotherapy. We were in the hospital, but which one? I can’t remember. Was it Portland or Boston? Once detailed memories are slipping away. Bleeding like an unrecognizable tattoo. Fading away into an unrecoverable abyss that is my mind.

The word tattoo is not the appropriate term for what it is I am referring to on my arm, but I like the implied permanence of the word. Tatuaje in Spanish. This is a mark. The word mark can be used to refer to a tattoo. I’ll stick with tattoo.

I don’t have any professional ink tattoos, and this is as close to one as they come for me. I’ve wanted a tattoo for as long as I can remember, but I’m as indecisive as the next person as to what I would get and where I’d place it. Indecisiveness stops me from getting a tattoo.

I fear the permanence of the ink. What’s worse is I fear the permanent ink starting to become dull and bleed into something I can no longer make out, and yet, still very much inked below my skin. No longer the crisp image it once was. I imagine touching up the tattoo one day, but then it would no longer be in its original form. For some reason, this terrifies me.

It’s the same reason a memory terrifies me. What is the original form of a memory? It’s the event. Doesn’t have to be an event. Could be a nuance, a sniffle, a look, a smile. A snapshot of any one thing that was a part of our lives. Now part of the past. A memory is made up of factors we can replay, but ultimately, details get left out. Unless we write them down, paint, draw, or photograph them, we may lose the memory. Similarly to how the tattoo will never be the same after its creation.

The details which make up a memory might linger with us for years. A scent associated with the event. The color of the sky the day she died. How smooth our favorite mug felt in our hands as we sipped morning coffee. When it comes to June, I didn’t think my memory would allow for details to drop off. What I have learned since she died is that some memories are not more loyal than others. A memory is not a moment in time we can presently return to without unintentional alteration’s regardless of who the memory is about.

The memory is of utmost importance to me because for a while I believed it was all I had left of June. However recently, I am discovering there is more.

The tattoo that I am referring to I discovered on my body several years ago is in its original form. It will grow into its potential with time. It will never disappear and the lines won’t blur. They will deepen as wrinkles do with age. The thought of this makes my body feel warm. An imprint of June that will never die.

A tattoo denoting what my body cannot forget because although time is unforgiving on the mind, it’s very giving to the body. Time gives us wrinkles. Time takes away from us too, but I prefer to focus on what time has given me. Disease took June, time did not. I look forward to what more life has to offer. I am perfecting the balance on the scale of life.

The tattoo represents what my body has endured. What I’ve survived. I am not discussing the black circles under my eyes from years of crying, although those too, I’m afraid, are now permanent.

I’ve learned in these last few years that the body moves forward with time but it is nothing without its past. Our bodies represent the culmination of life’s experiences. Individual markings on individuals. I see the tattoos all over my body when I step I out of the shower. I’m practicing noticing the marks my children have left me with gratitude and not distaste.

Caring for June was an experience that reverted me to my original form. June’s diagnosis stripped me of the outer layers I had padded myself with over the years based on who I thought I had wanted to be. When June became sick, I was reduced to my only my body and my motherhood. Everything else in life was cut away. Nothing else mattered. I became a one-dimensional snapshot of a human. A cardboard cutout. It was as if my body had forgotten my past. As if there was no future for my body. As if I became a memory of myself. Does a memory have a memory? Does a memory have a future?

When June died, she was far from her original form. The perfect baby I had given birth to only a year and a half earlier, had been altered by the toxicity of medications, chemotherapy, and surgery. Like a memory, like a tattoo, June would never again be in her original form. Still perfect, yet altered. The distance between June after chemotherapy from June before chemotherapy was obvious. The distance did not only grow between June and herself, but it was most obvious between June and her peers. The tumor robbed June of her potential to be healthy and grow like other children. The chemo robbed June of the healthy parts she had left like her hearing and fertility.

The tattoo I refer to is in the shape of lines. They can be found just above my left wrist on the inside of my arm. This skin is still some what supple because it’s the underside of my arm. There are no white spots where the melanin has died. The lines themselves look like I took a tiny X-Acto knife and made shallow cuts diagonally from the outer edge of my inner wrist up my arm. It’s a spectacular thing because I’ve never cut my arm as one would need to do to create this design. It evolved with June and with time.

I look for the symmetry on my other arm, but there is none. There are no fine lines and the skin on my right arm is bland. There is no symmetry to this tattoo. Symmetry is something a mother of a child with cancer often looks for in tiny lumps and bumps. Something a mother of a child who died of cancer looks for in herself and her living children. Symmetry doesn’t set off internal alarms. Symmetry is to be embraced. I can let go of the notion of symmetry here because I’ve finally realized the origin of this tattoo.

If you look closely, the skin on my left inner arm just above my wrist, under my watch band, looks like the skin on a snake that is about to shed. The veins give the skin a bluish hue just as a snake’s skin has before it sloughs off. The lines are connected by scales. The scales slightly less apparent than the lines. At times during June’s treatment, the mark of lines on scaly skin were bright red. It was a reflection of the time. The time I carried June.

Unlike the snake, I will not outgrow my skin. I cannot escape it although I’ve wished to. I do not need new skin to continue living. My skin may become worn out like a snake’s, but it’s the only skin I was given for this lifetime. The new me is learning to appreciate my old skin. The tattoo makes it a bit easier.

Today, a stranger may not see the tattoo from a distance. It’s not angry as it once was. I notice it in the light of the sun that shines through the window at the kitchen sink while I wash dishes. In the sunlight, it looks as if it was created with white ink. The scales become obvious. With time, this tattoo will not fade. If I had to guess, it originated when my first daughter was born. June solidified it’s existence when she was born and more so, after she became sick.

June progressed from a newborn to an infant and in that time she clung to me like an infant primate does to its mother. Initially, I was baffled, irritated, and confused by this behavior. Constantly holding June prevented me from completing daily chores and making meals. It became worrisome when I had to leave her with someone else and go to work. I’d peel her away from my body. My eldest daughter never attached to me in such a way.

June’s attachment became the natural process. I’d read articles and heard strangers whisper about how one should never constantly carry a baby around. A baby should develop independence, learn to crawl, and one day, learn to walk. June never met these milestones, but it wasn’t because I carried her.

June and I became one. She wouldn’t have it any other way. I had no choice, but to rise to the occasion. I picked her up because she needed me. Then I found out she was sick. It felt natural to continue to carry her for the rest of her life.

That is what I did.

My body will never regret not setting her down.

The tattoo on my left arm just above my wrist is the mark of June. It is made of lines created by pinched and twisted skin compressed by June’s body. For every day I carried her, the lines grew a little deeper. It’s a mark of proof that she did exist. She was right here. The mark of a memory. This arm lives to tell the story. It’s an imprint that will never be forgotten because as I age, so will my skin, so will the lines. I run my fingers over them and remember.

To remember

not that

June is no longer here.

To remember

instead that,

June,

is never gone.

The Jarboe family at our Ferry Beach Retreat in 2022

Staying positive during scary, uncertain times

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…