'Acceptance With Grace' with Mary Beth Kaplan

The Second Letter in the Collaboration Series

Hello, Dear Readers, I hope you’re well. Thank you for choosing to spend some of your precious time with us—a warm welcome to new Carer Mentor subscribers. You can read about me, Victoria, the founder of Carer Mentor, here: Who Started Carer Mentor and Why?

This is the second ‘Letter from a Caregiver. The first introduced the series, and I shared my letter to my September 2017 self.

This letter carries a gift of grace.

In this moving letter, Mary Beth offers her younger self compassionate guidance when she faced the devastating diagnosis of her son’s leukaemia.

Through intimate, tender words, she acknowledges the overwhelming pain while gently encouraging resilience. She discusses connecting with those who are part of her son’s care team and other families on their own journeys.

Her letter shares practical wisdom alongside emotional support and how she found personal solace through art and spirituality.

Mary Beth reminds us that even in our darkest moments, we are never truly alone.

Thank you, Mary Beth. You’ve generously shared a painful piece of your journey with a lot of heart. I’m grateful for our connection; it’s been nearly two years now! ❤️

This letter is an opportunity and a gift from Mary Beth.

Author Bio: Mary Beth Kaplan is a writer and podcaster on Substack. She lives in Northern Indiana, US, with her family. She loves listening to The Beatles, practicing yoga, gardening and anything vintage. Connect with her via Instagram @the_paperbackmama and her Substack, Mantras and Coffee. mantrasandcoffee.substack.com

'Acceptance With Grace' By Mary Beth Kaplan

Dear Mary Beth, August of 2022,

My friend, how are you? Can we take a moment here? Just us. It’s okay to stop.

Please let me hold your hand for a moment. I know you feel like your entire world has caught fire, but please know I’m here with you. I am the spirit soul that lives within you. The ‘you’ that speaks, feels, and knows your truth. I know your strength. I know you feel shaken and broken beyond anything right now. Stop and breathe. Go slow. You are about to learn how durable our inherited DNA is over these next few years. You come from some pretty tough stock. You have 'hardy' coded into your genes.

That August was hot, thick with humidity in the mornings. An undeniable feeling of change lapped over us, silently eroding away the ground beneath us. Carrying with it, an air of possibilities mixed with mystery. Summer was ending; it was time to go back to school. But something began to rise up that could no longer be misunderstood. We needed answers. His symptoms became overwhelming. You watched your, ‘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. These strange, persistent night terrors and travelling pain plagued his entire being. It was an agonizing space in time. You were right to take him straight to the ER when his own pediatrician overlooked the symptoms. Referring to this as "post-pandemic teenage anxiety." I know you beat yourself up for not doubling down on bloodwork when you took him in to be seen that day. You trusted your provider. The ER physician caught it, though. He saw what was happening. And this was the first step in getting him the direct care he needed. The first step in re-aligning what became broken. That was quite an ambulance ride into Chicago that day. The paramedic riding with us did her best to make smiles happen.

It was so hard to feel our body’s immune system give way, as we waited, that endless night. Biding our time until the confirmation from his doctors…cancer. High-Risk Acute Lymphoblastic Leukemia or B-ALL, in shortened terms. Processing this polarizing news unleashed the worst feeling flu into our body. We could hardly breathe, as we sat bedside, wondering how this could actually be happening. Nursing the twelve-year-old mind and heart of our firstborn son, as he lay there curled up, was our first priority. We all know what you were most likely sick with (COVID). But no one batted an eye as you cared for him for those eight long days. He needed you, his mom. You managed.

Seeing your son walk without being in extreme pain was the only medicine you needed. Throughout that initial hospital stay, we saw each round of chemo give us back our boy. Allowing him a better chance to heal and beat this insidious cancer invading his bones. A better chance to beat this nightmare. With every treatment, he came back a little bit more.

Moving forward, the miles you will trek on this journey will only forge a strength stronger than iron in you, in 'us.' Wrapping around us like the myelin sheaths that wrap around a neuron. Thickening with each measure taken. So, take heed, you will do this very hard thing. There is no way around it, only through it, sweet girl. I want you to know I’m here with you every step of the way. It’s imperative that you lean into practices that soothe your soul. You must armor up.

You will learn to take control. You will make tough decisions, learn how to edit and multitask in a whole new way. Dig deep and take the lead, becoming a captain. A captain of this expedition to kill cancer. You, dear one, shepherd your, 'our,' boy back to health, again! You will see the entire treatment and post-treatment through. A shift in your energy, from mom to caregiver, is the thread, now, woven into the tapestry of our unimaginable life. You will get to know the Child Life Specialists who will have an enormous impact on the mind and heart of our boy. They hold the sanctified key to the way a medical appointment feels for a child. These angel workers always keep the procedural visits on track. Stationed, ready at hand, helping to guide, explain, and reward. Comforting in the most compassionate, loving way, while allowing dignity and agency to remain intact. They say, “you don’t know Child Life until you know Child Life.” Let this be a comfort to you. You don’t have to do this alone.

You’ll also watch a revolving door of intensely patient nurses serve our son and our family. All working in unique unison, these beautiful souls become like trusted surrogate moms. These special souls take the proverbial torch; let them. Allowing us to close our eyes, take a walk, grab a cup of coffee, listen, and counsel in the darkest hours. Let them. It's okay to let them care. We actually get to know a few on a considerably deep level. It will be inspiring watching these dedicated souls. Nothing says intelligent patience like making small talk about unique interests. Debating over the best way to cook a perfect steak or the latest trends in cosplay. Knowing exact blood numbers, along with regularly scheduled fecal collection, is highly personal. Special, special people.

You will get used to the dedication of time spent at medical appointments. As well as the scheduled inpatient chemo treatment extended stays on the sixth floor. "Don't forget to say hi to Remoc in the lobby!" a quip heard over the elevator speaker, seared into your subconscious forever. These trips will bring their own set of challenges. But, also benefits. Mindset becomes paramount. Remember to prep meals and stock up on reheatable microwavable frozen meals. They are cheaper than ordering out. But go ahead and just download DoorDash; you are going to need it. And remember the cold brew! You will definitely need that! Be prepared to meet and connect with other parents in the hospital's family kitchen, in support groups, and other places. They tell you their stories. Listen to them. Some of whom do lose their children. I only say this to you because this is the reality. You will come through this. No matter what. You will be okay.

Be prepared for some unscheduled stays for the unknown illness with fevers above 100.6. Put the emergency direct line number in your phone immediately. So, you aren't searching at 3 a.m. You’ll get to know the drive to and from the Southside of Chicago well. Have a go-bag packed and ready at all times. I recommend getting an amazing pillow that feels like a hug. You will, unfortunately, form a love-hate relationship with the hospital couch. That pillow will serve you well.

Art becomes a place of refuge for you. Let it. You discover your poetry ancestors. You meet people who match your energy; you bond with others in a profoundly important way. You gain insight and a deepening within your yoga practice. Uncovering a devotion that lives within, allowing me to come forward in a much clear and concise way. It is through this practice you are able to be there at our boy's side without falling to pieces. The deepening of your relationship with God, the omnipresent, and all that is, is what holds you. Holds us. Maintaining an ongoing conversation, without bitterness, compels the light to flood in. Let it. Something that will be a process for our boy. Our steadfast love and prayerful nature shelters him; this is sewn deeply within us. Through an outpouring of love and kindness from others, you will continue on. It is through the charity of others you manage this journey. Accept it with grace.

That terribly beautiful hospital couch will be your refuge. Settle in. You will read some profound poetry and write some of your own from it, too. A few will get published. Yes, I said that right! You will be amazingly creative throughout this period. You will lean into your writing because it is the only thing you know how to do at this moment. And that's okay. Put your words out there. Who cares if it’s even good or makes any sense. We know our ‘why’. And that’s all that matters.

With all the grace and gratitude,

MB- today, xo

Continue by reading an article containing two poems that Mary Beth wrote during this period

‘Soft Power’ and ‘Just Hair’

The Closing Rapid Fire Questions from Victoria:

1. Fill in the blank: ‘Empathy to me is... extending grace in any circumstances.’

2. What’s one question you’d ask your future self? What are you creating?

3. What’s one quote/song/movie/book that’s inspired or carried you through to today? One book that has carried me through is…my journal.

“What the forever? How good can my life get? How is all this good happening to me? Can my life get any better than this?”

-Rev. Dr. Michael B. Beckwith

A prompt for discussion from Mary Beth:

What is one healthy self-care practice, as a caregiver or not, you can lean on to help you through the hardships of your everyday life?

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