Hopefully Ever After
Caregiving As a Parent — Monthly Discussion Series
Hi there and welcome to Caregiving as a Parent — a discussion by caregivers, for caregivers. This is a discussion series hosted by Carer Mentor and is intended to let an array of caregiver’s voices be heard. If you happen to be in the throes of a caregiving journey, we see you and we would love to hear about your experience. The discussion thread is always a safe space for true connection.
My name is Mary Beth Kaplan and I write Mantras & Coffee, here on Substack. I began writing here as a way to cope and stay connected to something creative, as I cared for our son through his cancer journey. Writing became a close friend, and a healing way for me to release all the things, over these last few years.
Our eldest son, Jonah, was diagnosed in August of 2022, when he was 12 years old, with HR B-Cell Acute Lymphoblastic Leukemia. He is now a fully recovered, thriving 16-year-old. His active treatment was a very intensive, full-time job. I was tethered to my boy and ready for anything throughout the entire process of his active treatment. And now in the post-treatment phase.
The written word, mantras, along with prayer, and poetry were key in helping me deal with the extreme emotional ups and downs of our son’s recovery. Even now, in post treatment life. These modalities have helped to keep me steady as I help him process everything he’s gone through and navigate his suvivorship journey. I’m beyond grateful to be here and to share.
Even in all life’s glory and in the most tragic moments, we always learn something. Day after day, constantly being inundated with EVERYTHING, we all need a little help sometimes. We are all in this together. Even caregivers need caregivers.
This discussion is part of the Caregiving As a Parent Community Network, curated by Victoria of Carer Mentor
Here is our team:
Each month, one of us hosts a discussion with all of us showing up in the comments for each other and for you.
• Chris B
Make sure you go back and check out all of our previous posts: Last month, Amy J. Brown hosted our discussion, The 75 Second Ride.
As I read Amy’s words, I felt a level of understanding I have not felt very easily before. She speaks about being a caregiver and living life with less-fear. As a caregiver, we are always preparing for the next thing. We forget to just allow regular life experiences to just be. It is a challenge to become un-worried. I know taking care of my son, I definitely tended to grasp onto ‘the plan.’ Still do.
Amy reminds us to take a look at the mindsets that develop through our caregiving experience. She encourages us to take time within the challenging moments to ‘notice’ and remember ourselves, despite the overwhelm in the moment. I think as I read her article, it sparked a realization about my own kind of mindset through our family's caregiving journey. Amy’s article is a must read! Check it out here!
And without further ado…here is my part.
Hopefully Ever After:
Reconciling the Space Between the Ding of the Childhood Cancer Bell and Everything That Comes After
Waking up early, belly full of nerves and excitement on some hot summer mornings paired with fresh anxieties about the future and a whole new set of goals that are actually just beginning to take shape, is enough to put anyone over the edge. But this kind of excitement is the kind we recognize as the ‘good’ kind in the life. The ‘coming of age’ kind. The kind we use to measure where we are and where we are going. Not whether we are going to literally survive through it to see ourselves, actually, live.
Driving my son to his new summertime job at a local cafe in town has been an absolute welcomed relief compared to what our past summer days have looked like, regularly, over these last few years. Our days were once filled with long days spent at hospital visits, overnight stays in sterile rooms, isolation, mixed up days and nights and the relative overwhelm and frustration that comes from grief. It could have very well have been Winter. We probably wouldn’t have even noticed.
On a particular day this past June, Jonah called us from his new job. Well, he called me and I didn’t answer. So, he called his dad. He was having a panic attack. He took a few moments, for himself, outside. His dad let him breathe, listened to what was triggering him and just let him release what was weighing on him. Apparently, a smell got him. He said that smelling that smell, all of a sudden, sent him straight back into a space of extreme stress. He felt paralyzed.
Reflecting back on the springtime when we were suspecting something was wrong. We sensed something beginning to rise up that could no longer be misunderstood, in the summer of 2022. We needed answers. His symptoms became overwhelming. We watched our boy go from a healthy, happy child to a depressed and anxious one in a matter of months.
He was restless, dealing with mysterious symptoms that affected his weight and energy. These strange, persistent night terrors and travelling pains plagued his entire being for months. It was an agonizing space in time.
I remember not sleeping a wink on that gnarly hospital couch that awful night, as we waited for word, after arriving to the hospital by ambulance. Word of our boy’s prognoses. Word of what we were about to gear up to battle against. Word that would take over our entire world. Our son Jonah was diagnosed High-Risk Acute Lymphoblastic Leukemia or B-ALL, in shortened terms, August 16th,2022.
After an extraordinary long amount of time spent in the many phases of leukemia cancer treatment, our boy rang that golden bell December 20th, 2024.
That day may have been the day we were finished with chemo, but it certainly didn’t magically make us feel any kind of ending feeling, at all. It was like we were embarking on a whole new extra-long trust fall kind of thing. We thought we would feel so much lighter and way more relieved. But this ‘after’ kind of period of time was a brand-new endeavor for us. We were just ecstatic to see our guy re-enter his life and see his smile glow in the best way possible, again.
In my opinion, watching him experience his freshman and sophomore high school years and face his continued recovery was a marvel to watch. I think what he had to face was a far more worthy of a master’s level life degree even at such a young age. Rather than becoming engrossed in the typical, naive and foolish antics of youthful teenage existence, (which he still found some to take part of) he had already learned his own boundaries and what he knew his capabilities truly were. It was astonishing to witness.
(Thank you, Stranger Things, for being the parallel story + soundtrack, continuously playing in the background, alongside our surreal and incredibly intense real-life journey experience.)
Knowing that he felt a level of confidence in himself, allowed that worried part of my heart to shut off. Sort of. The anxiety didn’t just disappear when that bell went ding. I was beyond exhausted reaching this point in the journey. I can’t even begin to explain the feeling of melting into bed every night and actually sleeping deeply again. Without anymore 3am anxiety attack wakeups. My daytime anxiety lessened, but that was still something to work through. (It’s still something to work through.) We were finally transitioning back to ‘normal’ life, again. Only my nervous system hadn’t received the message, yet. Things are so much better now. But every so often, a bad night will still happen. A bad day will happen. Understanding PTSD has helped. Along with listening to mantras.
I felt so guilty that day that Jonah called from work and I wasn’t available to answer his call. I had been the primary caregiver through the treatment phases, i.e. doc & nurse appointments, hospital stays, school stuff, and any and all hawk-like watching. My hubs was our MVP. He was always there making sure. While also holding down our livelihood.
Knowing that this new phase meant new transitions, and that I didn’t have to shoulder everything illness related, anymore, opened us up to a new portal. A new doorway accessing a new, wild land called the post-treatment phase and suvivorship. Jonah was meant to talk with his dad that day, on the phone. He was meant to feel the sound caregiving and vulnerable love given by his dad on the other end of the phone.
Entering this new point into a brand-new unknown, made me realize that there is no actual “there” point. There is no point at which we get to, that says… “ok, we’ve made it, we are there now.”
Despite the scary feeling of knowing these anxious moments will most likely continue to happen, I still did feel like we were living our very own fairytale like story— our own “hopefully ever after” kind of story, in parallel. What a gift to get to see the blue sky on crisp fall day or see rain drop bubbles perfectly placed on a sweet, yellow rose in our garden, in a brand-new way. What a gift to see our son smile again. Belly laughs hit completely different and everything felt like heaven on earth. We had a new respect for the gift of this life.
We began to not see the trying moments as crises moments anymore. We began to see them as experiences, reminding us of our own collective competency, leading to the evidence that lends the confidence in knowing that we can absolutely handle anything. We have the strength to keep going.
On some of the longest stents spent, bedside, on those endless hospital days, I would need to take walks to get some movement in and clear my head. I would walk those long hospital hallways and see the glass cases along the walls holding the fire extinguishers. “Break in case of emergency,” they read. Reading those words, I felt them deep within my soul, like poetry. Like I somehow knew that these same glass cases must line the inner chamber walls of my very own heart, in the same manner.
Our world was on fire, and along with the amazing physician scientists, and childhood cancer kids that came before our boy, we spent every hour of every day putting out the oxygen sucking blazes that plagued us. I knew happening upon this new insight, it must have been true. This was part of the work. Either way, we felt a sense of empowerment.
To this day, I believe I’m not alone in having the gift of these fire extinguisher boxes aligning my chamber walls. My husband has them, Jonah has them, Jonah’s siblings, Rosey and Bodhi have them, we all have them! Jonah has grown strong again, and through his therapy he has learned how to access his own heart boxes. Knowing this, helps my own stress response and gives me the confidence that as he grows up and goes out into the world, he will be able to handle each blaze as they come. Even if I can’t be there for every panicked phone call, I know he has the ability to “break in case of emergency,” anytime, anyplace, on his own accord.
As a family, the five of us, we’ve been through something really hard. Going toe to toe with childhood cancer and watching our son, our brother fight like hell to keep living, has given us a different perspective. Despite each of us living different journeys, we see and know our healing hearts, collectively, will always keep watch for one another sending out signals for any type of emergency, forever. That kind of familial lesson isn’t something easily attained. We do our best to continue to actualize this through connection, understanding and growth daily. Three teenagers, two parents, one dog and three cats…we have accepted that there is no ‘there’ only our own “hopefully, ever after”, and we feel extremely blessed we get to live this idea, right now, right here and every day from here on and ever after.
Dearest reader, fellow caregivers, and anyone who feels compelled, we would love to hear from you and know your thoughts, feelings and experiences. I invite you to share your unique experience here. This is a safe, empathetic space to release and feel seen in community. Whether you maybe caring for a child, a parent, a spouse, a friend or any other loved one. Let’s gather ‘round, connect and chat. Please feel free to share your experience. The floor is now open for discussion.
Today’s prompt for discussion:
What coping tools have you discovered, while navigating your own caregiving journey, and in the quieter “aftermath” moments, that live on within your recovery, that have kept you steady despite thinking about the inevitability of possible flare-ups occurring again?
Share your thoughts or ideas
Reply to each other’s comments/questions
Explore ways to share, connect, and collaborate together.
Hey Friends! Welcome to our discussion thread, here at our Caregiving as a Parent monthly round-table 🎙️this is a safe space to let our thoughts and feelings release. Being a caregiver is hard. And it can feel lonely. The hopes of having these discussions are to help remedy these feelings, just a little bit. I would say mantra, soothing music that is simple and repetitive, has been such a calming go-to for me, as a caregiving parent. It sounds simple, but when the nervous system is triggered in the worst way possible, I found it to be the best way to combat my anxieties and keep me in a levelheaded state of mind. Plus, listening to mantras was easily accessible while hunkered for some of our long, drawn-out hospital stays. MC Yogi is a fav!!
To answer your question Mary Beth… oh man here we go…
Caregiving has taught me that coping is less about eliminating fear and more about learning to live alongside it. The possibility of another hospital stay, another setback, or another sleepless night never disappears, but I’ve learned not to let anticipation steal today’s joy.
Writing has become my refuge, giving shape to emotions that otherwise feel too heavy to carry. For me, my poetry reminds me that even pain can be transformed into something meaningful.
I’ve also learned to celebrate ordinary victories because they are never ordinary to a caregiver. In the aftermath of crises, I return to routines, faith, humor, music, and the simple act of being fully present with my son Bray Bray instead of going down the rabbit hole of what might happen next.
Recovery, for me, isn’t forgetting what happened; it’s trusting that whatever is thrown our way, we’ve already proven we can walk through hard things together… one day, one breath, and one act of love at a time.
Bray Bray has taught me to choose presence over perfection, and for that I will always be grateful.