John’s story can be told in the molds of these two precious handprints. His/our life before cancer, between cancer, and after—when he passed, and our lives were forever changed.

That tiny handprint from December 2011 tugs at my heart each year as I unpack the ornaments for the Christmas tree. Without fail, I rest my hand over the sweet handprint that once belonged to our five-year-old son. In that moment, I’m carried back to John’s carefree life, to our carefree life—brothers, hockey, and the quiet gift of ordinary days.

I also can’t help but reflect that just four months after receiving this treasured gift, John was diagnosed with Stage IV high-risk neuroblastoma. That little hand—our little boy—had to endure so much… so much.

Back then, just as he did in recent years, John was told what he had to do to get better, and he did it. Not only did he do it all, he did it with a maturity and bravery far beyond his five years. Chemotherapy. Bone marrow biopsies. Scans. Radiation. Surgeries. Daily injections at home. Immunotherapy. A clinical trial. Poke after poke after poke.

John did it all, and those who witnessed it were in awe of his tenacity. Five-year-old John understood there was something in his body that didn’t belong, and he was going to do whatever he was told to do to make it go away. And the cancer did go away and John was declared No Evidence of Disease!

The time in between those two handprints was lighter, though the quiet hum of worry from a previous cancer diagnosis never fully left us. For anyone that has faced a cancer diagnosis, it never does. For the first two years, John had scans every twelve weeks. Then it moved to every six months, and finally to yearly visits at the Children’s Cancer Survivor Program.

Even with that worry always nearby, we were blessed with many years of an active John—enjoying lacrosse, hockey, golf, friends, school, cabin time, and of course, his brothers and family. For several years, life almost felt somewhat normal.

The second handprint, taken after his death, tells me so many stories of our eighteen-year-old son. It reminds me how, in an unexpected instant, John’s life was turned upside down once again, this time by the beast, osteosarcoma. And still, he faced limb salvage surgery and recovery, every therapy and every setback with drive, determination, and a ferocious will to live.

I, too, am reminded of all John endured over the past two years, but at the forefront of my heart are the positive things those hands held. The Xbox controller he spent countless hours playing with his brothers and his friends. The fishing pole he held as he set the hook and reeled in bass from Big McKenzie Lake. The marshmallow goo that was left on his fingers from the campfire smores. John’s most prized possession—his golf clubs—hands gripping tight, hoping for a decent drive, but always steady and consistent hands around the green. The Steve Earle T-shirt he chose at the concert. Handing us money at the Spooner Rodeo because he was the only one carrying cash, and the rodeo was cash only. The countless puzzle pieces his fingers turned this way and that, searching for just the right fit. Fingers deep in the popcorn bucket at the movie theater, and hands covering his eighteen-year-old eyes during the scary scenes. Holding the TV remote, endlessly scrolling to find just the right show for us to watch. The tight grip on the box cutter and the exaggerated swipe as he tried to open a box. My pleas to be careful were met with a calm, confident, “I got it, Mom.” The love those hands gave to his beloved dogs, Bell and Izzy. The gentle pets and the pull of scruff on Bella’s neck to gently direct her to his bedroom.

Mostly, that big guy handprint – where I can lay my own hand inside – reminds me of my strong love and connection with John. I can almost feel his hand wrapped in mine the way it was the last weekend of his life.

John’s handprints remain deeply etched in my heart. These handprints tell a story of love, resilience, and a life lived fully—despite the battles he faced. They remind me that while John’s time here was far too short, the love we shared, the memories we made, and the strength he showed will forever hold us together. And so, each year as I place those ornaments on the tree and press my hand over his tiny print, I am comforted by the knowledge that John’s spirit is always with us—guiding, protecting, and loving as fiercely as he ever did.

Love, Hope and Blessings,
Shelly

Extra Thoughts

Our family is deeply grateful for the time between those handprints. We know those years were precious—years that far too many families facing Stage IV high-risk neuroblastoma never get.

Grief is a beast we continue to face each day. Yet we remain hopeful for the days when it will soften its prickly thorns.

John was looking forward to The World Junior Ice Hockey Championships. We would have been at some of these games.

Before John’s death, he was in the process of purchasing gifts for us. I had suggested writing letters and his quick response was, “I’m not doing that,” – and that was the end of that. We had conversations about what he was going to buy his dad, brothers, Nena and Emma. When he would ask me what I wanted, I would give him the mom sincere response of, “I do not need a gift John, being your mom is all the gift I will ever need.” He scoffed at this, and one day as he was walking down the hall in front of me he said, “Come on Mom, I’ll buy you anything you want.” I then replied that if he was going to insist, I wanted pictures taken with him. John’s quick reply was, “Ok, you better hurry up before my hair falls out.” John was to start a new chemo soon and he wanted pictures with hair. We never had the chance to get those pictures taken as the end came sooner than we could’ve imagined.

John had purchased his dad’s putter before his death, and with John’s money, I purchased the gifts that he and I had discussed – drivers (golf clubs) for Michael and Nena, hunting boots for Jeffrey and a butterfly necklace for Emma. That left me, and I was feeling that I really wanted a ring with his birthstone, a sapphire. I looked at and tried on many beautiful rings, but it wasn’t feeling right. A ring like that would need to be purchased from me and I wanted the ring to truly be from John, and on his budget. I stumbled upon a company in England, Ashes Into Glass and I put an order in for a simple, but beautiful ring. I picked blue for John’s birthstone and yellow gold for the band. The white/gray specks in the ring are John’s ashes. The ring arrived on Christmas Eve day. How perfect was that? This special gift from John makes my heart so happy. A part of an affirmation I say each day is, “… know that my spirit is with you always” Yes it is, and John is always with me on my finger too. 🙂 https://ashesintoglass.com/us/about-us/

If you’ve made it to the bottom of this post – that’s impressive. It seems I am extra wordy this evening.

Much love to you all

The tremendous love I have for John is responsible for the heartbreakingly deep loss I feel. There are days it takes great effort to bring gratitude to the forefront of my mind, as grief is bold, relentless, and even sneaky at times. Grief can literally take my breath away, cause an ache in my chest, and make my body feel as though it is filled with sand, the heaviness making it difficult to move from the couch. Grief can be a feeling of longing, a trickle of tears, or the flood of full blown sobs.

I have heard and read so many metaphors for grief, and they all are very true. Grief is: a beast, a wave, a rollercoaster, a puzzle, a dark tunnel. I envision my grief as a vine, a climbing rose vine to be exact- as John loved the beauty of flowers. This vine is always wrapped around me, reminding me of my forever love and connection to John. There are times that it fits loosely with the thorns barely touching my skin, giving me a reprieve from the heartache of John’s physical absence. Other times it tightens, catching me by surprise with thorns that press into parts of me I thought were beginning to heal. I know there is beauty to be found in this vine with its soft, pastel petals and the sweet fragrance of the roses, however at this time, those tenacious thorns seem to be in charge.

The vine was oddly very loose in the early days after John’s death and leading up to his celebration of life. I think at first I was numb, maybe in denial, and then in “pull it together” mode for his visitation and service. I was so determined to be able to speak at his celebration of life, I think I almost didn’t let myself feel all the emotions that I should have that day. Looking back, I can see I was going through the motions, but had shut down some. Within the next week, that vine had a vice grip on me so tight that it rendered me a complete mess! I spent so many hours on our couch bawling my eyes out, with my sweet husband sitting by my side comforting me to the best of his abilities. He most often would just sit closely, quietly patting my leg, letting me feel all the emotions.

I struggled to recognize this new version of myself. Where had the Shelly gone that stood strongly  by John’s side for the past two years? That version of me had completely vanished as that vine of grief twisted and turned, pulling tighter and tighter.  Even in his own grief, Jon recognized my struggle and was supportive, understanding and so patient with his messy wife.

In the weeks and month that have followed, there are times the vine has loosen a little, and the thorns do not cause such a tense emotional response. During the quiet moments of my days, that vine is sneaky and can give me a quick squeeze, triggering a light stream of tears. Driving easily provokes the vine. If the radio is off, I think too much and when the radio is on, I can find meaning to any song. Almost any song … I have found the Juice Newton’s “Queen of Hearts” and John Fogerty’s “Centerfield” trigger zero emotional response, hence they are blasted on the radio my entire 1 mile ride to work and again back home. The vine also likes to show it’s thorns during my lunch and prep breaks at school, really any time in the day that my mind and body have an opportunity to be at rest.

In mid October, I returned to my classroom and 5th grade students. While at the time I was anxious about stepping back into school, it has proven to be very healing for me. My wonderful sub did an excellent job of setting up routines with my groups of students and she also set me us for success for my return (Thank you Mariah!). I work with amazing people and I feel totally supported and loved at school. Students, past and present, have been so sweet with their gifts of words, cards and hugs. I will always remember running into a former student that is now in college, and how he took me in his arms and gave me a huge bear hug and whispered to me, “It’s always good to see you Mrs. Gegen. I am so sorry about John.” This wasn’t a quick hug, but a loving embrace and he held on. When he could have turned away to avoid an interaction with me, he came towards me – which is difficult for some adults to do. Before I was back at school, I ran into another former student and she also walked right up to me and said, “We miss you at school. I am sorry about your son,” and she gave me the sweetest hug. I have been so fortunate to have had experiences like these with many students. Of course, there have been a few awkward moments as well – children are, after all, curious and  wonderfully honest. The grief vine, for the most part, behaves pretty well at school, at times gently tightening, but quickly releasing and allowing me to go on with my day.

That very same vine, when I’m at home, can squeeze the living daylights right out of me at a moments notice. It takes so little – a slip of paper (like the day I came across John’s very first PET scan results showing that the cancer was only in the bone of his leg- we later learned that wasn’t true. If only it had been just the leg, his leg was good), a sporting event on TV, a walk into his closet, a winter hat, a bag of unpopped popcorn, a trailer for a movie…. truly anything. At home, grief and that dang vine are making the simplest tasks feel overwhelming, while also zapping my strength and turning me into the most unmotivated bump on a log EVER! I’m working on it one day at a time…facing each day one at a time.

I knew this grief journey was/is not one I can manage on my own. Right out of the gate, I had Jon and I enrolled in a Grief group. That didn’t go as planned because after the first meeting I was overly concerned with another member (shocking, I know…). I needed her phone number because she was in desperate need of a friend, and I could be that friend. I was trying to convince Jon of this and he adamantly disagreed, reminding me that we are there for us and there is a leader to address concerns with the other member. Soon after, a member of Children’s Bereavement team came out for an in home visit. When she learned that we were in a grief group, her suggestion was that we are not in a place to be taking on the grief of others. I do believe my husband breathed a big sigh of relief when I agreed to pause that experience. I may revisit this opportunity for healing down the road.

I have both purchased and been gifted books on grief, pouring over them in an effort to learn how to navigate life without our sweet boy. Sometimes, my husband is lucky enough to hear me read a chapter or two to him at bedtime. He has been a good sport, but he also probably wouldn’t mind me getting back to my habit of staying up late so he can go to bed in peace.

One of the most helpful tools in this grief journey – and dealing with this nasty vine -has been the support I’ve found through the person I’m seeing via my schools Employee Assistance program. Time away from work has not been needed, as he comes to me during my prep. This itself has been a gift, as I do not have one second of any type of leave until the beginning of the next school year. We have had many heartfelt and meaningful discussions during our sessions. My eyes were opened to the reason that school is going well- because there I find purpose and meaning. At home, all my purpose, meaning, and caregiving were all wrapped up in John, just as it needed to be. I would have that no other way. As I navigate this grief journey, I’m floundering a little (some days a lot) as I work on discovering my purpose and meaning outside of school.

The healing activity that may be helping me the most in managing that invasive climbing rose vine of grief is keeping a journal – putting my thoughts and heart on to a page. This simple act of writing to John – sharing my deepest thoughts, worries, emotions, or even the mundane day to day activities (there are a lot of sports and hunting updates) gives me a place to embrace the quiet in a calming manner and to connect with John.

A few weeks ago Jon, Jeffrey, Emma and I attended an event put on by the O’Connell Family Funeral Home – The Grief Journey Through the Holidays. We are hoping to take some of the insight shared that evening with us as our family faces the coming weeks, finding ways to honor John as we face this first holiday season.

I understand that because I love John so deeply and completely, the prickly thorns of the climbing rose vine will always be a part of me. Still, I look forward to the day when those thorns more often remind me of the love we shared, rather than the life that was lost- hoping in time, healing will come. I know I have a long, long way to go before I get there.

Love, Hope and Blessings

Shelly