As A Bereaved Mother Curiosity Has Saved My Life

“I am growing with my grief.”

June in the backyard — photo by author

My daughter June died from neuroblastoma three years ago on March 13th. As I tally the last three years, I don’t allow for my brain to penetrate the often devastating, hopeless existence it has been on many days.

Today, instead of adding up the relentlessly difficult days, I admire the threads of hope and purpose I have intentionally collected since June died.

I weave the threads together. They are symbols of strength, meaning, and resilience. Three things which have helped me to normalize and integrate the absolute unthinkable into my life.

Please know, my toddler dying of cancer will never be ‘normal’. There are days I still wake up wondering, is this really my life? Despite great efforts to heal my nervous system, I am regularly shocked back into the state of flight or fight.

By focusing on my cultivated strength, I choose how I will live in the days ahead. I take back a little control. Instead of pushing June’s death away, I weave it with my reclaimed loom into the coarse linen of my life. Perhaps, by not judging the events that have unfolded, and therefore, not seeing my existence as a horrible, ruined mess, I can remain curious and hopeful. Likely, you wonder what curiosity could come from losing a child to cancer. I am here to tell you, it comes in many forms, and it has saved my life.

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Grief is the permanent reminder that June is never coming back. A dense fog that lowers and lifts. Thickens and thins. Travels out to sea and back in. A permanent reminder of life’s impermanence. Love’s fog that I am cast within.

She is gone, but I am still alive. A catastrophe I am forced to accept. However, my curiosity to discover the meaning behind June’s death and apply it to my greater being helps me to also accept there is a reason I lived, or I too, would have died.

As if living isn’t proof enough for the bereaved mother she must continue on. The deeper significance has to be found.

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On the anniversary of June’s death, I allow myself reprieve from the deeper thoughts surrounding the last days of her life. The ones I can never forget. Her face moments before her last breath.

The pain is too great for me to turn inward, face that she is gone, and stare death in the eye. I have trained my brain to allow itself to turn outward and become curious about the world around me when I cannot handle the burden within.

On a walk through the woods.

From the living room floor, flat on my back, staring at the ceiling while my living children, giggling, run circles around me and fall to their hands and knees.

From the grocery cart, where my son sits pointing to the vegetables and fruits surrounding us, asking, “Mama what’s that?” A moment becomes enormous when I allow myself to see through his wondering eyes. Temporarily, it pushes the thoughts of the badness out of my life.

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The thoughts of June dying aren’t the polite visitors who knock before they enter. They come clamoring in.

The memories of June’s final days are so powerful that I must put up a barricade to prevent them from entering. I feel sorry for this, but they are debilitating and unkind. I have no other choice. I reserve them for when I am alone and can safely and inwardly agonize in the darkness that belongs to me.

In the interim, I let myself off the hook because the thoughts are crushing. It is in those times, that if I choose to not give up, my eyes begin to curiously wander. With deep breaths, I allow my senses to take in external factors. I know when my body finally relaxes because I begin to see the magic that exists within my pain.

Like, for example, on the third anniversary of June’s death, I dragged my feet through daily obligations in a misty rain.

“The sky cries too, June,” began my narrative. “The sky cries for you.”

Come to think of it, I don’t remember an anniversary of her death when the sky hasn’t cried. It fits my narrative. It’s comforting.

The droplets of rain on my face felt cool, almost replenishing, when I considered them to be in honor of June.

When that evening arrived, the clouds parted, and we were gifted a full moon. A beautiful Blood Moon in the sign of Virgo (not ironically, June’s sign — Virgo) that didn’t only provide me with extra light as I wandered outside into the brisk nighttime air to let out the puppy one last time. It also promised new beginnings when I realized there would also be a total lunar eclipse.

The moon disappeared, shadowed, then turned red.

Blood red like my broken heart.
Blood red like my still beating heart.
They are the same, it doesn’t matter the day.
They are always the same.

Doesn’t it make sense that I will grieve for the rest of my life? The thread of hope in this situation is that in the last three years, I have developed protective barriers around hurt, ones that I use in my favor.

This is grief three years after my daughter has died.

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When I read about the astrological significance of the eclipse, it made so much sense. It fit perfectly around the anniversary of June’s death by symbolizing the loss of something. Such as the energy of letting go of the things that don’t serve us, a common theme in my life. It also represented healing the areas of our lives related to loss. I might sound like a lunatic, but this sacred sign uncannily applies to my life.

Instead of wallowing in self-pity, which I did plenty of leading up to the last day June spent on earth, I extracted meaning and created a narrative around the third anniversary of her death which began with the sky crying and ended in a Blood Moon with a total lunar eclipse.

This allowed for an entire moon of peace to fill my broken heart.

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Initially, the meaning I created after June died wasn’t as woo-woo as my narrative of the Blood Moon. I’d add things like getting off the couch or, eventually, going to the store. Each a feat, creating a notch in my bereaved mother survival belt.

I didn’t know I would be making figurative notches in a belt after June died, but like the threads, it helps. I have accepted the belt and use it in my favor. I’ve wrapped it around me and as the pain changes, the hurt shrinks just a bit. I am able to make another notch and reminded in this uncontrollable, extremely uncomfortable situation, that I have a choice on how to live after June has died.

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Grief is still not without its physical aches and pains which returned in February, when the days started to grow longer. When the evening sky began to feel more like an omni theater than just the usual wintry night. When the sky’s blue hue spread so vastly I felt as if it might swallow me whole as I limped up the front steps gripping the railing with terrible knee pain. Some nights, its eternal reflection became too upsetting in its memory of the last days of June’s life that I felt I might dive upward into the blue sea, never to return.

My aches and pains continued with the end of daylight savings, which fell on the morning of the last day of June’s life the year she died. Only then, did I think maybe once or twice, had the clocks not jumped ahead, the time she died was actually 10:05 and not 11:05. Or that by luck, she gained an extra hour on the last day of her beautiful and chaotic life. My baby who was born on the first day of Autumn experienced an extra hour of sunlight the evening she died.

The meaning for me exists here. I don’t have to mold it to fit my life. I only have to get curious and pay very close attention to the details around me.

These are the things the grieving mother considers three years later while creating meaning on the anniversary of the last day of her child’s life. The tiniest imprints etched in life’s stone that can never be forgotten once they have been seen.

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I wonder, “Who am I today after surviving the last three years?”

Despite being held on a bed of nails, I hope I am still kind and not embittered by the sharp, metallic taste of June’s death. I hope my children enjoy my company and don’t find me too harsh or overbearing, as I know all good mothers can be. It’s hard to explain to them that I just care so much. That I am still so afraid. That I wish life turned out differently. That I am trying my best.

I hope they see me as their Mama and not a broken mother. I still intend to create the life I always dreamed of for myself and them. I don’t know if it’s possible after your child has died, but this bereaved, evolved version of me is willing to find out.

I have the key, which I’ve realized not everyone possesses, to unlocking life’s greatest gifts. Why I had to endure my child’s death to come to this, I am uncertain, but I will not waste my precious key which unlocks the doors of significance to June’s life. It will allow for me to open them and step into June’s light.

I hate to refer to keeping “June alive through her memory” because that is not what this is. June is not just a memory. What I create for meaning in my present life keeps June alive, her memory merely a byproduct. It keeps her present in our family. We feel her energy all around us. We choose to believe her presence is forever saturating our lives.

A present moment only becomes a memory when the moment has passed. Until then, I let June be present.

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Memories are another topic. The further from June’s death I travel, the greater the void of time grows between me and her. It feels unfair, as I stack the last three years of my life against her one-and-a-half. It makes three years unbearable. With time, the greater the gap becomes between me and a society who doesn’t understand how I could possibly move on and be healthy, while I am actively grieving my child. One that pities me and can’t comprehend that in order to live a full and meaningful life, I must incorporate her into my every day.

By remembering June, I continue to heal and to grow with the loss, and not away from it. It is empowering for me to grow with my child’s death. To grow away from it would be to grow into the darkness, where without light, I’d suffocate. No earthly being grows away from the light, nor would they ever choose to. Grieving mother is no exception. She’d certainly never tell you to turn away from your light.

June is the sun. I can reposition myself in any direction. People can lead me away from her with their uncertainty, but like the plants, the trees, the vines that find the light, I always grow in the direction of her. By leaning into the light, it is the only way to continue growing when a part of me has died.

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It pains me to admit that three years later, it is difficult for me to conjure an organic memory with June. It’s only been three years. I try to remember moments sitting under the porch, protected from the hot sun, while my oldest daughter ran through the sprinkler in the backyard. I remember Junie, laughing, and pointing at her big sister. I remember the days, she laid, sort of limp, in the same carseat which she loved, eyes glazed over which prompted me to worry that the elements of the outdoors were too overbearing for such a fragile, tiny being enduring chemotherapy.

On good days, I wondered if she wished to run through the sprinkler with the older sister she adored, or if just sitting there, was enough to bring her a morsel of joy. I remember these moments, but they’re evoked from an encapsulated photograph from my phone, frozen in time.

The memories I now have are sorted and pulled like those from a catalogue. At a glance of the photo, my brain melts into the scene and I am brought back to life with June. Without the photos, much of my memory of June would be gone. Recalling the detailed lines of her precious face. The blue of her eyes. Her devilish laugh and scrunched up nose when she found something funny. Again, all of these memories are brought forth by a photo.

The only exception to my memory are the traumatic or few momentous events that took place in the final year of June’s life.

The day June was born and the day she died, are two days forever burned into my mind. Perhaps, I’ll never need a photo to remind me of those days. It brings me relief when I worry about how full my iCloud is or if it’s realistic to keep shelling out over twenty dollars a month to store them.

I wonder about people who didn’t have access to phones or cameras before their child died. It makes me cry.

Empathy for others is a common daily thread I now weave into my life.

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I got off the couch. I left the house. I started a blog. I write about June every day. Sometimes, I share it. Other times, I keep it for grieving mother. There are things in this life that will never make sense. June’s death is one of them. Yet, three years later, without any more clarity than the day she was diagnosed, I am here. Let this be a stamp in time letting everyone know, my daughter died, but I am alive. I love more deeply. I feel more fiercely. I care more about the things that didn’t used to matter. These are the doors I have access to with my key.

I am the same mother that once thought if her daughter died, she’d die too.

My heart is broken, but it still beats.

I intend to keep June alive by threading her through my life until I reach the final day of mine.

Three years later, I’ve learned this is how I will grieve and experience happiness. I am a bereaved mother finding balance in my broken life. By staying curious and open-minded, I will survive.

The Definition of Pediatric Cancer is Killing Our Children

“Defining it as “rare” disadvantages the pediatric cancer community”

June enduring toxic treatment — photo by author

The majority of pediatric cancer research and discussion revolves around finding a cure and developing less toxic forms of treatment. There is one additional, extremely important piece, however, so often omitted.

My daughter June passed away from neuroblastoma when she was eighteen months old, nearly three years ago. A cure no longer serves her. I am no longer praying for there to be a less toxic form of treatment, or to lessen the devastating effects of what she would have endured.

Instead of asking questions such as “How are we going to beat this?”, I am left with, “How did June’s cancer form in the first place?” and “Why did this happen?”. The most important question for me today is, how do we prevent childhood cancer? A topic there appears to be little discussion about.

There is a common thread as to why we do not know what causes pediatric cancer, why we haven’t found a cure, and why we don’t have less toxic treatment available for our children. The underlying reason is because pediatric cancer is largely underfunded, compared to adult cancers.

At the root of why it is so underfunded, there is one single line that stands out to me most. It’s familiar because I have heard it repeated many times by nurses, doctors, and healthcare workers. When replying to my burning questions, they would often say, “It’s so rare, so we don’t know”. I can’t be the only parent in the pediatric cancer community that has heard the excuse, “Pediatric cancer is rare,” when searching for answers.

This cringeworthy sentence is exactly why pediatric cancer goes underfunded.

Recently, on February 28th, the world acknowledged “rare disease day”. As I scrolled through endless photos of children dying of cancer, the captions and hashtags #rarediseaseday felt wrong, and didn’t align with the pediatric cancer community that I know so well. There is something broken about a system that continues to allow pediatric cancer to be labeled as a rare disease.

According to the National Institute of Health (NIH), the term “rare disease”related to pediatric cancer, provides unique challenges regarding difficulties of early and accurate diagnosis, access to therapies, visibility in systems, and awareness in the general population. This single, antiquated definition is hurting our children.

At the end of the day, we all want answers for our children. To find the answers we deserve, we must increase funding for pediatric cancer. In order to do that, there is one logical solution. We must redefine pediatric cancer and remove it from the “rare disease” list.

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Every 30 minutes, a child in the United States is diagnosed with cancer. Daily, there are 47 children diagnosed in the US. That is one child and family told every three minutes their child has cancer. Yearly, there are nearly 15,000 children diagnosed with cancer in the US.

Alex’s Lemonade Stand Foundation (ALSF), a prominent figure in the pediatric cancer world, reports that there are 1,800 deaths by cancer for children in the US each year.

In 2022, my June was one of those children who lost her life.

Alex’s Lemonade Stand Infographic 2025 (used with permission)

Worldwide, every year, there are more than 400,000 children diagnosed with cancer. To give you an idea, that is the equivalent to the entire country of Iceland or the Bahamas.

It is the equivalent to the city of New Orleans. Fewer people live in Tampa than children are diagnosed with cancer each year. I am from Maine, so to put it in perspective for my Mainers, multiply the Portland, Maine population by a little over five-and-a-half and that’s how many children, worldwide, each year, are diagnosed with cancer.

Two million children, every five years, are diagnosed in the world.

What do these numbers mean? Personally, I hate reading statistics on childhood cancer. While gut wrenching for me, because June became a statistic the moment she was diagnosed, numbers don’t correlate to feelings or emotions which evoke empathy or understanding. Quite the opposite. Pediatric cancer statistics are wasted on society, who reads them, clicks out, and begins making dinner.

We must utilize statistics and blend them with our voices and our stories of our children to ensure the world sees what we do. So they no longer turn a blind eye.

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It is so easy to ignore our children who are hidden in hospitals or tucked away in their beds at home, too weak to stand, at the end of the hallway in the little rooms of their houses, on a dead end street. The only people who notice they are sick are the neighbors who note their absence in the yard.

They notice the hair loss as the mother carries the child, wrapped in blankets, from the front door to the car for another trip to the hospital. Or worse, in the ambulance that pulls into the driveway, lights flashing, sirens blaring. The neighbor hurriedly runs back into the safety of their home, acting as if pediatric cancer is contagious. Then, they watch from the kitchen window as the struggling family tries to assimilate in a society that marginalizes it. A society that deems it acceptable to call it “rare.”

Life continues as it always had for everyone else, while parents cry in basements and bathrooms after their child has long gone to bed, so not to upset the child or give them cause for more concern. They are already burdened with so much.

The parent is the same uncertain person you are. The parent never imagined her child would get sick. Then one day, life was flipped on its head. Only the day before, that mom was no different than you. It hurts me to ask this of you, but imagine if it was your child, your life, your dead end street where neighbors noticed your child no longer came out to play. What would you do? What does that feel like to imagine?

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In the United States, cancer is the leading cause of disease-related death in children. Childhood cancer rates have increased by 24% over the last 40 years.

Childhood cancer isn’t going away.

In the last ten years, 150,000 children were diagnosed with cancer in the US.

One child out of every 285 children will be diagnosed before they turn 21.

I think you’re getting the point.

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So, where are the federal funds that do exist for pediatric cancer going?

The Cancer Moonshot Initiative (CMI) is federally funded and invests in both pediatric cancer and adult cancers. What is interesting is that for adults, the CMI focuses on research and programs to improve cancer treatments, improve the lives of those diagnosed, and programs in prevention. Oddly, there’s nothing mentioned about prevention in the CMI children’s section. For children, the CMI funds research and programs that focus only on treatments and outcomes. There is zero mention of prevention.

Side note: having no prevention for pediatric cancer puts parents, doctors, and healthcare workers in a complete scramble when a child is diagnosed.

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Why are we not ticking every box we can for the pediatric cancer community in the same way we do for adult cancers?

When I visit cancer.gov, searching for prevention, it states that environmental causes of childhood cancer have been particularly challenging to identify because cancer in children is “rare.”

The colossal excuse reappears.

Cancer.gov states that it’s difficult to determine what children were exposed to early in their development.

How are we going to change this?

Why is it difficult to determine? We built a nuclear bomb. We send people into space nearly every day. Are you telling me you cannot spend a bit more effort in identifying the various factors that might have caused childhood cancer here on the ground? Likely, there are many willing parents who would partake in surveys and questionnaires regarding lifestyle habits and family history. There has to be a way to narrow it down. If you can’t already tell, I’m one bereaved parent chomping at the bit to offer my information.

We do not need a clinical trial to determine why our children get cancer. It’s not that complex. We need healthcare surveys. We need parents. Right now, hundreds of thousands of parents who have had children with pediatric cancer exist in the US, spanning generations.

Why aren’t we surveying them?

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I must argue, for the sake of our dying children, that pediatric cancer no longer be considered a “rare disease.” Perhaps, you think this is a semantics issue, although hear me out.

In the US a “rare disease” is defined by the NIH as “one that affects fewer than 200,000 people at any given time”.

In 2020, at one given time, there were nearly 500,000 children living with pediatric cancer in the US who had been diagnosed before the age of 20.

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Roughly 4% of federal funding goes toward all pediatric cancer research. It is not broken down into individual cancers like that with adults. Adult cancers receive more funding because only a quarter of adult cancers are considered rare. Adult rare cancers receive more funding than pediatric cancer, despite being considered rare.

Let’s me say that again: adult rare cancers receive more funding than pediatric cancer does as a whole.

Where is the equality and justice in this situation?

Private philanthropies, which feel hopeful, fund at least half of all of childhood cancer research, but fall short in comparison to those which raise money for adult cancers.

Again, we are at a loss.

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Rare cancers affect fewer than 6 out of 100,000 adults each year in the US. Pediatric cancer affects 17.14 out of 100,000 children ages younger than 15 years. Pediatric cancer is more prevalent than adult rare cancers, however it receives far less funding.

The above statistic omit “adolescent cancers” ages 15–19 which would increase the pediatric cancer statistic. For some reason, pediatric and adolescent cancers are divided despite the Merriam-Webster definition of “pediatrics” being “a branch of medicine dealing with the development, care, and diseases of infants, children, and adolescents.”

Where is the uniformity when discussing pediatric cancer?

Meanwhile, due to lack of funding, children are treated with drugs that are meant to kill adult cancers. A child’s cancer varies genetically from adult cancer, and therefore, should be treated very differently.

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The definition of “rare” is an excuse that is killing our children. It is no secret that pharmaceutical companies are less likely to invest in pediatric cancer research because of the simple fact that the adult cancer market is larger and more profitable. Pharmaceutical companies want a return on their investment.

The National Cancer Institute (NCI) states that because childhood cancers are so “rare” it is difficult to find children who will partake in clinical trials. Clinical trials need a certain number of patients to determine whether a drug will be effective in treating a specific cancer. For example, because of the small cohorts of people, there might not be between 100 and 300 children with neuroblastoma who will partake in a study, therefore not making the study worthwhile.

Between 700 and 800 children are diagnosed with neuroblastoma each year in the US. Feels like an ample amount of children to create a cohort. Various factors play into the clinical trial, however like age of the child at diagnosis, a child passing away from the toxic treatment options during treatment, or because treatment failed them and the cancer relapsed. However, if this country were able to gather immediate information regarding diagnosis and created a campaign for people to enter clinical trials with their children, what would that look like?

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In tandem with redefining pediatric cancer and removing it from the rare disease list, I must call on the greater world to help us heal our children. I must begin the argument for advocating for supporting prevention, research, and treatments for pediatric cancer on the world stage.

It is time researchers, doctors, hospitals, and organizations all over the world, come together for the sake of our children. This isn’t an individual’s issue. It is a world problem.

What might clinical trials on the world stage look like for pediatric cancer? It is known that multinational trials implemented across multiple countries are especially valuable for “rare diseases.” Cohorts do not have to be large. They can consist of a few hundred children. When there are over 400,000 newly diagnosed children to choose from, this shouldn’t be an issue.

Clinical trials are the biggest contributor to making progress within a disease. They are entirely necessary to keep our children alive.

What is the excuse for not doing this?

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It leaves me begging the question, how do we sleep at night knowing we are losing 22,500,000 years of life every year in the US to childhood cancer when there is more that can be done?

When we lose 1,500 children per year to the disease who could have lived at least another 60 years die, then we have lost 22,500,000 years of our future as a country.

Shame on our country.

Shame on our world.

Personally, June has lost 525,600 hours of her precious life. I will never know how she would have used it. Who she would have become. What contributions she would have made to the world.

Neither will you.

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The other doomsday problem related to pediatric cancer being “rare” and keeping it in the dark, is that it is more cost-effective to prevent than to treat. Prevention is free. Healthy children cost the healthcare system nothing. Cost-effective does not equate to lucrative for anyone involved in healthcare.

The United States deems pediatric cancer as rare because it is too expensive to invest in small clinical trials and the financial reward healthcare companies receive for a sick child greatly outweigh the benefit of properly treating them or by preventing cancer occurrence. If it is more lucrative to keep our children sick, what powerful, important leaders will ever use funds to determine disease prevention?

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June is gone. There is no way for me to time travel and change the events that unfolded. I don’t need a warm body to blame. I am not looking for a place to put rage. I don’t want revenge, either. I just want an answer. June is gone, but I want better and more varied treatment options for today’s children. I want the world to focus on pediatric cancer prevention. I want the country to stop comparing pediatric cancer to adult cancer and calling it “rare.”

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June came to this earth for such a short time, although her impression will last an eternity. Because she was so vulnerable in her death and wasn’t protected by our culture, our country or the world, it is my right, my position, my obligation as her mother and advocate to continue to question everything about her experience on earth.

June graced my life and I owe her nothing less but to find the reason why she became sick. We need to start to discuss how we can prevent pediatric cancer.

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The way we speak, the words we use, have dire consequences. Words are preventing our children from living. They have the power to reshape our future, and as we have learned here, they excuse our jaded past.

Time’s up. Let’s acknowledge pediatric cancer at face value and not reduce it to fit into the tiny, convenient definition of “rare”.

Where Are The Support Systems for Families Who Have Lost a Child?

“It is time to improve standards of care.”

My daughter, June, died of neuroblastoma when she was eighteen months old. The days thereafter were isolating and lonely. That was nearly three years ago, and to my surprise and not, the lonesome nature of losing a child has remained prevalent in my life.

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I never imagined that when June perished in the face of pediatric cancer, so would the practitioners, such as the nurses and doctors, who had steadfastly stood by our side. It’s not that we no longer wanted them in our lives, nor do I believe, they didn’t want us.

As a mother, deeply in mourning, I didn’t make a choice as to who should stay or go. Many of the days that followed June’s death were a blur. I know matter-of-factly that the sun and moon accompanied me, but I don’t remember them, either. Mostly, I remember the stained blue couch I sat on, eight months pregnant with June’s younger brother, while staring at a television that couldn’t penetrate my brain no matter how many hours I looked at it. The television, a fixed prop on the wall, was there for company. My brain could take nothing in, which matched what I offered to the world.

Often, the television and the dog were my best companions at the lowest low of my life. If you have lost someone, then you know, all you need is a warm body by your side. Not to speak to or to touch. Just one that will sit there and listen if you want to talk or share a fleeting thought, about the one you lost, before it’s gone forever. You need someone to create space for when the pain becomes too great (because it will and it does) and you worry, you too, might die. In dire circumstances, a warm body has the power to reflect that you are(fortunately or not) still alive.

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The last nurse that played a role in our lives, in relation to June, was the one my husband called the morning after she passed away. We had been given instructions to make the phone call when we were ready for someone to dispose of every last remnant of June’s medication from the previous ten months of treatment.

There were orange bottles the nurse pulled from the cabinet and tossed in a bag. The white labels had been worn and were peeling at the edges from being gripped tightly in the middle of the night as I tried to twist off the childproof cap while balancing June, who was nauseous, feverish, and drooping like a wilted flower in my arm.

There were syringes that had the numbers rubbed off of them that the nurse also dropped into the bag. A plastic bag of fruitless endeavors was another indicator June’s life had come to an abrupt end. Something I couldn't grasp as I sat, perched rigidly on the couch, unable to get comfortable in my body, as I watched the nurse carry the bag, one heaping pile of waste, out the front door. The medications had sustained her life, offering daily reprieve from the debilitating symptoms caused by chemotherapy and stem cell transplants.

I watched the nurse take it all away. As she closed the door behind her, I had no idea that would be the last of our ties to the pediatric healthcare world.

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After June died, the doctors and nurses we had leaned on for support and hope, disappeared into death’s abyss as if they, too, walked into the same fog of grief that had been lowered over our life.

The fog, which clouded the sun for years, was filled with dewy crystals of mourning, loss, and pain. It appeared that life had frozen over when our child died. It took months before I noticed the icy crystals and the way in which they were affecting me, keeping me cold and wet, stinging or numbing me in places I’d never felt.

The doctors and nurses had walked through them, also affected, “But how?”I wondered. Did some of the crystals cling to the clothing of the practitioners? Did they wipe them off? Did they melt? Did they leave a stain? Would they forget June? Our family?

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Let me be clear, I do not blame the practitioners. Most every healthcare provider who played a role in June’s life was absolutely wonderful. We were extremely fortunate. The outcome was not their fault. Nor was it ours, her parents, her advocates, and often onlookers in the incomprehensible scene of June’s life.

Instead, I blame the system for not having better protocols. I blame the clear lack of standards of care in place for the families when a child dies. The healthcare community thrives on standards of care, which is the level of care a practitioner should provide a patient and family. Something I am familiar with because I am a nurse.

According to the National Cancer Institute pediatric cancer occurs within the context of a family and differs from adults cancers, which primarily affect one or two other adults in the adult patient’s life. With pediatric cancer, the ripple of the diagnosis is felt among one to two parents, siblings who are often children or adolescents, teachers, friends, aunts and uncles, cousins, and others who may have been in direct care of the child. Parents, not the patient, make the decisions regarding the child’s care and what treatments they will or will not receive. Children, their cancers, treatments, and deaths are embedded in the lives of the people who love them, primarily their families.

How do we implement a level of care for a bereaved family? Which nurses, doctors, or nurse practitioners would take on that role and responsibility?

Many people in healthcare do not know what to do, which was demonstrated to me over and over when some of June’s doctors wrote or called us after she died, and others, who played an intricate role in her life, did not, and never have.

Doctors attempt to keep our kids alive, but the hard truth is that our children also die, and when they do, so do the protocols. It’s time we weave our child’s treatment into their death and create some sort of sustainable, linear, supportive afterlife for families.

Perhaps, those that didn’t reach out, felt they had failed June, although that would be to completely ignore her death. Maybe their shortcomings were due to a simple lack in the standard of care. Either way, both feel wrong.

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The memory of June lives on through the lives of the people who helped us through treatment. Ultimately, they are no longer a part of our lives, and that is okay, however, we must continue the conversation around what a support system looks like for a mother, a parent, or a caregiver after their child dies. It cannot be the sole responsibility of the parent to navigate the child’s death alone.

What is one to do after their child dies and the foundation on which the disease was built upon crumbles?

It’s time to pass the torch to those with a greater knowing of how grief and child loss unfold and how to tend to the aching wounds of parents. To implement experts during a devastating tragedy in aiding our families with a standard of care. Not only for those who have lost children to cancer, but for those who have lost a child, period.

June is a part of me and I cannot pretend she did not exist. Because the healthcare world was not equipped for her to die, it feels synonymous with pretending she never existed. There is no greater subsequent heartbreak for a mother after her child dies than being left alone by the world to grieve. No one casts a net. The only reminder someone still remembers her child and her family is through a Celebration of Life card, painfully addressed to the parents of the deceased child, that comes once a year in the mail.

Pediatric Cancer Is So Personal

“Anchoring others to our world may lessen the burden and heighten awareness.”

June watching a St. Jude’s commercial — photo by author

“Don’t forget! There is a St. Jude’s fundraiser on March 8th!” the barbell instructor announced at the end of class as people meandered about, putting their equipment away.

I looked around. Was it just me that heard that? No one else appeared affected.

“It’s going to be a doozy of class, guys,” the instructor continued.

I could feel the wet balls of anxiety scaling the pipes, ready to burst like water balloons when they reached my eyes.

I was in a class with forty strangers that I attend three times a week. I know the majority of faces. Usually, you’ll find me in the front row because I am the last to book my spot, which is largely determined by my living kids' latest flu or ear infection. For your information, the front row is the least desirable row. Still, I show up. I make do. I do the work. Some days, I am even grateful to be there.

The blaring music the instructor plays helps me to temporarily forget my worries. Between sets, the women in the back of the room voice their complaints about the workout which makes me smile, even laugh. The teacher, standing on the stage in front of us, loves what she does. In the scheme of my bereaved life, it’s a relatively easy spot to land, albeit, in the front row.

………………….

I don’t have personal ties to St. Jude. My daughter, June, who died of neuroblastoma when she was eighteen months old, was treated between our hometown hospital and Boston Children’s Hospital. Yet, pediatric cancer is so incredibly personal. Every child associated with St. Jude could be my child.

Each case of pediatric cancer is different, the cancer itself, the treatment options, if any, and most certainly, the outcome. However, inexplicably, I feel connected to each child, parent, family, and organization that has anythingto do with pediatric cancer.

Am I the only one?

There exists an invisible rope that extends from me to each person I’ve ever met affected by the disease. At the end of the rope is an anchor set in the earth beside the person. I don’t set it intentionally, it just happens, and it doesn’t discriminate. For example, it doesn’t matter what type of cancer their child has or had, what age the child is or was, or what socioeconomic or cultural background they come from.

When I think of all the ropes that span from me to others and the anchors set at my feet, I feel a little less alone on my personal and isolated island of pediatric cancer.

Like for example, the long rope that runs from me to the mom I was introduced to just months after June was diagnosed. The only time we ever met was in a parking lot of the pediatric oncologist's office on a drizzly November day. She had extra bottles of tube feeds which she loaded into the back of my car. June sat in the back seat. Her son in her backseat. He was in a similar place in treatment and had the same type of cancer as June. We were just two mothers trying to survive. Despite June dying and her son thriving, she has anchored me with her kindness, compassion, and in the grief she carried for June after she died.

The lines don’t stop being thrown when your child dies. Since June’s death, the bereaved friends I’ve made through the nonprofit organization Rett’s Roost are some of the closest bonds I’ve ever formed. They have helped me make a bit of sense of what happened to June and our family. They have demonstrated how to continue life after losing a child.

I am anchored to the moms in Canada who I’ve never met, yet I follow them on social media because of their great online community. They openly talkabout their kids' cancer, host fundraisers and podcasts, and raise awareness in their daily lives. They inspire me to do the same. They show me how to support other moms who are also suffering, despite their own hurt.

My friend, Jacqueline Dooley, who I met while writing about June on Medium is someone who has provided me with great comfort through her own beautiful writings about her daughter, Ana. The bond we have formed through our love of writing about our daughters, who are no longer with us, has accompanied me during the darkest times in my grief. It has provided me with the spark that I need to reignite hope, and to surface where there is light.

It doesn’t matter the circumstance or outcome of pediatric cancer, I am connected to everyone I’ve ever met throughout this frightful and enduring journey. Whether the anchor has been tossed from me to them or from them to me, it is equal in balance, the rope just taut enough, to keep us securely entwined.

………………….

One organization that I am invisibly anchored to is St. Jude. Although, recently, when that tie surfaces, it seems to always be in a public setting and can be a sneak attack on all of my senses. I once wrote about the experience I had with a St. Jude’s commercial, just months after June died, while sitting in the waiting room of a car dealership. People abruptly became scarce. A true metaphor of what life is like for a mother after losing her daughter to cancer.

………………….

No one in the barbell class knew I lost June, nor should they have. I said hello to the kind woman a few rows down who always smiles at me when I come in a few minutes late. I reassured the lady behind me that I wouldn’t let go of my ten pound weights that we aggressively swung into tricep extensions to the song, ‘We Found Love’ by Rihanna.

I’ve established some level of trust in this new environment which keeps me coming back, yet I’ve never shared that my daughter June had cancer or that she died. There’s never been a reason to because, although, I come to the gym and use the class to work through my grief, the two don’t obviously overlap. I’m not wearing a sign on my head that says, “My daughter died of cancer,” although sometimes it feels that way. The class is a safe escape from the reality that June died, and despite almost three years having passed, everyday, I still need that escape.

………………….

Then, St. Jude hit. A bomb was dropped. My worlds collided. I peered out from under my mat, to see what everyone else was doing. People still mulled around the weight rack. Huh, seems like it’s only me, I thought.

I was thrust back into unsteadiness, where I’d lost my footing. I’d been pushed into the deep end of grief. I was the only one there. Everyone else was in the shallow end or headed to the hot tub. People were making their way to the saunas while I quietly drowned in the deep end because I didn’t have a chance to unvelcro my leg weights. The sneak attack reminder of ‘this is my life’ caused the weight of losing June to take me away from my present surroundings and pulled me under.

………………….

When the flashbacks subsided, I found myself, sitting on my bench, pretending to look at my phone. I glanced at the mirror in front of me, my eyes were bloodshot. I noticed that the instructor had left and the room cleared out. Better that way. My cheeks were soaked with tears.

Pediatric cancer is so personal that when a stranger tosses a line, an anchor has the ability to pierce one’s heart before it falls to the ground.

The name ‘St. Jude’ triggered memories of the past. Like the time between stem cell transplants when June and I sat in the living room, and I fed her bits of cookie in her highchair. She wouldn’t eat at the time, but that day I was able to get her to eat a few Bunny Grahams. Her taste buds had been fried by the chemotherapy.

“Tastes like I’m sucking on metal,” one of my patients once shared with me who had recently undergone chemotherapy. June couldn’t specifically tell me how it affected her taste, though she told me in the absence of eating. Her waist told me by withering away as she regressed in clothing size. Her gaunt eyes reminded me, and the skin folds on her tiny frame that once harbored baby fat, did too.

I placed little cookies on the tray, lowering myself into a chair beside her. The television was on softly in the background to drown out the quiet. To make the space of the empty room feel a bit more filled and stop the deafening silence from suffocating me, as it often did.

A St. Jude’s commercial came on. We both froze. Then slowly, eyes fixed on the screen, June lifted a cookie to her mouth and chewed it, as she watched various faces of bald children, splayed across the screen, wave to her. Through the lens of June’s eyes, I watched the beautiful, sick children from behind June’s bald head. The children who appeared just like her. Goddamnit, I thought, I’d been forced to see that, yet again, this is our life.

I’m not sure why, but I took a series of photos of June watching the St. Jude’s commercial. Never once did she take her eyes off the screen. A little boy on the television ran into the arms of a nurse who handed him a string of balloons. June watched the kids, captivated, as I watched her, entranced and broken-hearted.

This is our life.

June — photo by author

A simple commercial, a simple name, exposes my truth. It’s not simple, however, it has the power to pull me from my present life back into the traumatic life I am forced to reconcile with, that is also mine. A reminder, although not meant to be intentionally harsh, can be brutal in an unpredictable situation like the gym.

The place I try to live is an intricate balance of grief and normalcy, whatever that means. The truth is, no one can possibly begin to understand, in a deserving capacity, the life of a bereaved mother or a mother whose child has pediatric cancer, until it is them positioned so vulnerably in the front row.

………………….

Several weeks of classes went by and another announcement was made. Before I could think much about it, I decided to throw an anchor.

“This is my daughter, June,” I said to the instructor after class, holding up a photo of June on my phone.

We embraced. We cried. It’s one of those things where, I didn’t plan to cry, but when I saw the tears forming in her eyes, I didn’t hold back.

“I had to share her with you because with the upcoming fundraiser — ” I stopped. I didn't know if she’d ever known a child who had cancer. Maybe June would be the first. Either way, maybe June would be filed somewhere in her mind.

I extended the rope.

“No one can ever truly ever understand,” she said. “Thank you for coming and doing the work. Thank you for sharing June with me.”

The anchor was set.

This is what raising awareness looks like for me. No one wants to be in the front row when it comes to this disease, yet we don’t have a choice. So instead of tapping out, we rise to the occasion, we do what we can. We do the work and suffer through it.

I cast my invisible rope into the world, hoping the anchor sets. For some the anchor will drag and won’t catch, and that’s okay, too. For other’s the anchor will be swallowed whole by the ground beside one’s feet. I consider that a win.

Pediatric cancer is so personal which is why it’s of utmost importance to continue sharing when you feel it is right. It might lessen the burden just enough for you to show up in your designated space, which if you’re like me, is in the front row.

Fleeing the States During the Holidays

When visiting my Chilean family, I have fewer obligations and can better manage my grief 

La Junecita on Christmas — photo by author

In avoidance of the holidays, I fled the country. Instead of celebrating the holidays in our new home, we are spending it in Chile which is similar to the very first Christmas we spent after our daughter June passed away from neuroblastoma. That first year, I pleaded with my husband to agree to traveling 5,000 miles away from our home in Maine, so I could get a little reprieve. Magically, I did.

By fleeing this year, I don’t have to procure holiday cards or hoist a tree. Let’s be honest, holiday cards require more than a couple clicks on the iPhone. There is planning, outfits, haircuts, and styling which all feel necessary by today’s standards. I could have used an end of year photo wrap of the kids, although after losing our daughter, even that feels burdensome.

I didn’t decorate before we left the country and since we recently moved, I couldn’t tell you where the box of Christmas stuff landed. I don’t care, but then again, I do. 

Inside of the box is a little ornament made of clay pressed with June’s hand print. There’s another ornament I made with a red ribbon inside of it that measured how long June was on her first Christmas. I remember laying her on the floor on her back and then rolling out the ribbon and snipping it just below her heel. Then, I coiled it and placed it inside a clear plastic globe. In black Sharpie, I wrote her name, the date, her height, and the year on the hard plastic ball. 

At times since her death when I have been alone, I’ve carefully extracted the ribbon and laid it on the floor. It evokes the memory of the day we created the globe, as well as how long she once was. When I’ve sufficiently admired the ribbon and most of the height she attained in her life, cautiously I coil it and place it back in the globe. Then, I wrap it in red tissue paper and put it in the corner of the box where it lives. It’s one of the few things I have left of June. I treasure these ornaments, but when the holidays demand I put them on display, I cower. 

………………….

I don’t have to listen to endless Christmas music every time I step foot in the grocery store which is an added bonus. In Chile, it’s not a given that wherever you go Christmas music is being played. More often than not, instead, it’s Ozuna or Bmontee blaring over the speakers and I’m allowed to forget the holidays for a bit longer.

A shadow representation of where our daughter June would have stood between her two siblings in front of the Christmas tree is amplified during the holidays each year. In Chile, that gaping hole isn’t magnified. The house where I am staying doesn’t have a Christmas tree. 

I don’t miss the old version of what the holidays signified to me. I’ll likely enjoy them again one day, and so far, I have enjoyed them here. In the backdrop of losing my child to cancer, however, the holidays are very different now. 

………………….

When I was fifteen years old, I studied abroad in Chile. I lived with a family who very quickly became the nuclear family I’d always dreamed of having. 

Subsequently, they are also my children’s family. June never met them in the flesh, although she did travel to Chile inside of me when she was thirteen weeks. A meeting of ethereal grace as my host-sister Isabel cupped her hand over my lower abdomen and smiled. I never once considered that June wouldn’t one day board a plane in anticipation of meeting them all. I know better than most now, there are no givens in this life.

Our Chilean family boasts an additional five cousins, three aunts, and another set of grandparents, and great grandmother for my children. So many more people to love them. Oh, and love them, they do.

………………….

Still, I am reminded of the holidays here in Chile. As we drive through downtown Quillota, strings of twinkling lights on tiny houses set behind fences lined with barbed wire remind me that I haven’t completely escaped my reality. Somewhere in the world it is cold and it is Christmas. 

My second born died of a horrific disease at an unimaginable age and yet, I must still buy my living children gifts every year, wrap them, and pretend Santa exists. 

I think of June as I scribble “From Santa” on each tag. What would she have wanted from Santa? I curse the universe, the world, our country, the food, the environment, the culture and myself for whatever it was that made June sick. There’s a pang of resentment brought on by the holidays. I despise feeling resentful. 

Is this how it is all supposed to go after losing a child? 

My children, ages six and two, deserve a “normal” Christmas. Whatever normal looks like 5,000 miles from home. 

Then again, I’ve considered that creating a Merry Christmas might not be possible only two and a half years after losing June. How many passes does a bereaved mother get before it’s time to let go of the raw emptiness and hurt that accompanies creating joy for her living children? 

It bodes the question, not just now in my grief journey but everyday, “What is expected of me today?” Expectations that come from within and from my children are what I am referring to. Society likely doesn’t understand the life of a bereaved mother, nor does it try to pretend it wants to. I’m not pretending it does. How could it? Society would have to lose a child to understand what we go through as mothers. 

………………….

Instead of searching for the answers, I retreat. To my room. To my computer. To the gym. To the plane that takes me far away. It comes with guilt. But as I watch my daughter, I imagine what it would have been like for me to run rampant through the lemon trees as a six year old on the dry terrains of Chile on Christmas Eve. I like to think it’s healing for not only me, but for her as well. 

The greatest gift any one could give is love. So I give all the love I have to my children no matter where we are in the world. In turn, I give myself, the eternally bereaved mother, love with the added touch of patience. I let go of any guilt of how this should all unfold.

Countryside of Chile — photo by author

………………….

My husband and I once sat in a child loss grief group every Wednesday for several months, six months after June died. There existed an ocean of pain between us that neither one of us could address alone.

One evening, the mediator asked us to close our eyes and allow ourselves to visualize a place that might bring us joy during the extremely challenging and enduring time that ensues after losing a child. 

Without hesitation, I imagined I was walking the dirt driveway that lead to my parents’ house in Chile. The gigantic green leaves of the palm tree in front of their stucco porch blew in the warm breeze. Not a cloud in the sky could mask the delight that beamed from the sun at our reunion after June passed away. 

I hadn’t seen my Chilean family since I was 13 weeks pregnant with June which meant it had been over two years since we were together. They had never met her. In those two short years, my idyllic life turned fraught with disease and anguish. My beautiful daughter had passed away. When I lost her, I lost myself too.

My husband and I sat on the oversized couch with our eyes closed in a room of other parents who also had lost their children. My husband's hand rested on my knee as tiny whimpers leaked from my lips. I wished so badly I could seal them shut. 

“Who is there?” The mediator prompted. 

I could see my Chilean family. In the center, my parents. Next to them, on both sides, my three sisters with their significant others and children. They held their arms out for me. My host-grandmother, Abuelita, tiny in stature, stood amongst the kids. I barely recognized her there at first, but then it was quite obvious. She, too, was reaching her arms out for me. 

When I envisioned my bereaved self approaching my family who awaited me in front of the palm trees, I walked toward them bloated with the suffering and pain of having lost June. I carried so much extra weight in pain that I felt I might burst. When I did burst, what would come out? Surely, it would be tears. Specific tears my body had held onto for padding and protection. The only thing that ever made me feel better for many months, even years, was crying. It still does. 

Inside my visualization, each person held me firmly, planting kisses on my cheeks. My sister Isabel and I hugged, sobbing together. The tears we cried glistened in the sun. Each way I turned I could see the remnants of pain expelled and I felt my own cheeks shimmering. As I released the pain, I began to shrink. When I opened my eyes, I felt a bit lighter, too. It was in that moment that I knew where it was I had to venture to next.

………………….

Chile is my happy place. It’s the place I get to run away from the woes of my daily life, including the holidays. 

This year, the moment I arrived the world around me and all of its prior engagements faded away. The worry and anxiety that often riddles me in my day to day life suddenly paused. 

It’s my perfect escape.

When I planned this trip in May, selfishly I knew that I was taking my children away from our family in the United States. But because I am now peaceful, so are they. 

A happy bereaved mother is a gift to her living children. At times this is an enormous feat to achieve. If I can give happiness to my children, then isn’t that the greatest Christmas gift?

………………….

Our lives in Chile are simple. My children swim with their cousins in the pool in the late morning. They take mini trips down the dirt path to the trees brimming with peaches that have been warmed in the summer sun for a quick snack in between cannonballs into the pool. They trample through endless lemon trees in the afternoons while snagging each perfectly yellowed lemon that hangs low on the tree. My daughter has decided that a dress with pockets is the ideal choice of clothing for gathering the fruit. Thankfully, we packed two. 

A peach tree — photo by author

My favorite part of the day is sitting in the evening on Abuelita’s porch sipping tea and eating homemade bread with apricot marmalade while the kids kick a half-deflated soccer ball around in the dusty driveway at the foot of the mountains which lie just beyond the rose bushes. 

I tear another piece of bread and lather it with ‘palta’ (avocado  —  a Chilean currency) and sit watching the setting sun as it dips behind the mountains. Some nights, when the air is still warm we linger to watch the moon rise. We share stories of one another’s lives. They listen to me talk about June. I fight back tears as my family holds my gaze. There is strength in the connection. Inevitably, we all cry. 

“I wish I had known her,” Isabel says. 

“You did.” The fact was we had spent hours on the phone video-chatting with Isabel while we were in the hospital. June knew her and knew her better than many people in my life. 

“But really have known her,” she said. “La Junecita, tan hermosa.”

I wish everyone could have known June.

………………….

Sometimes, and more regularly than one could imagine, the earth here shakes. An earthquake.

“Esta temblando,” my host-father says very calmly. He assures everyone they must stay calm. Depending where we are, sometimes we migrate to the doorframes of the house where it’s considered most safe.

Then for a several days, I remember the world beneath my feet. It is the same world I have tried so hard to forget since June’s death. One that has caused me great suffering. I’ve often loathed to be a part of it and begged the higher power to set me free. But when I am in Chile, the earth shakes and I remember how much bigger this life is than me. Than June’s death. That there exists something greater than us and we are a part of it. 

The most recent earthquake made me realized how disconnected I have been from the ground beneath my feet. 

We are what we believe we are and in this place, during the holidays, I am both content and terribly sad. I packed all of my problems neatly in my suitcase before I left and brought them to Chile. They are not gone. Although, I can leave them alone in the bedroom for a while. There is no harm in forgetting for a bit. 

Spending time away from home, I miss June no more and no less, but during the holidays, I am not more tortured by the thought that she isn’t here. Don’t get me wrong, I am plenty tortured, just not impeded by it. I miss her immensely every second of every day. 

Traveling this holiday has given me great reprieve from both my daily life and Christmas. I have temporarily changed my routine and pattern of living. In the face of grief, it helps. This year I am not filling my life with things that will break and grow boring. Instead, I have a little more space to remember what is important and what it feels like to breathe. 

Lemon trees in the yard — photo by author

Make it stand out

The lemon grove — photo by author

What I Feared Most After My Daughter Died Saved My Life

9 min read

“By creating new rituals, I wore my broken heart into something more tolerable.”

June’s hand in mama’s — photo by author

The world became a terrifying and unpredictable place after our daughter June was diagnosed with cancer. It only grew worse as we spent a large part of the year isolated in a hospital room. Furthermore, I was pregnant.

I forgot how to interact with ordinary people in common spaces like the grocery store. It was simple, between us existed an invisible divide: I had been touched by pediatric cancer, and for all I knew, they hadn’t.

I padded my life with oncologists and nurses. The only exception, was my OBGYN. Although, she too, had been touched by pediatric cancer because she provided me with meticulous care during a tumultuous pregnancy with June. These were my safe people. I lived in fear of everyone else, especially those from my life from before we knew June was sick.

When we weren’t hospital bound due to chemotherapy or blood infections, we spent time in our home. Life outside was reduced to a picture frame window. Looking out the window was like looking through the objective lens, or wrong end, of a telescope. People, animals, and cars appeared blurry and far away. They might as well have been Mars or Pluto advertising an entirely unattainable way of life.

Before June’s diagnosis, circumstances of our normal daily life included an infant and toddler, and life’s expectation were pretty benign. We anticipated the most basic things in life. A phone call or visit with a loved one, a new show to stream, and for me, a hot cup of coffee, a tarot reading, and a tidy house.

When June became sick our future was erased. Anticipation, now laden with anxiety, shifted from life’s basic daily blessings to the next doctor’s visit, dreaded round of chemo, and the constant question of whether June and our family would survive it all.

………………….

The idea of interacting with people who didn’t know June had cancer caused me the most turmoil. Her disease became a badge I wore which resembled a gruesomely bloodied, still beating heart. Without any choice, the badge became my new identity. One that I could not leave in the car while I ran into the store to buy eggs. An unspeakably heinous disease had taken over our life and permanently tagged itself as ours. I searched for ways to cover it up, so I wasn’t so exposed and vulnerable. Treatment combined with covid made it easy. I just stopped leaving the house.

As I watched the blurry, narrow world unfold outside, whispers of life continued to seep through the cracks in the foundation.

Like word of a new store opening in our vacant Maine town which boasted both a bakery and a fish market. Mom friends were probably excited. In my old life, I would have been too. I didn’t have any clue, however, if anyone was excited because no one shared it with me.

For some time, after June became sick, the thought of the market offended me. The blueprint was representative of a definite future which hovered over my indefinite reality. Must be nice, I thought, jealous of the inanimate design.

June was so sick and yet, people still had the nerve to host dinner parties that required expensive wine and caviar and the occasional dozen oysters.

………………….

One morning, driving to the hospital, I impulsively turned into the market and found myself walking through its doors. I recoiled in my pregnant, achy body at the sight of regular, smiling people.

The tangy smell of saltwater mixed with freshly baked French bread awakened my shriveled taste buds.

I walked up to a stand in the middle of the store and grabbed two fancy breads, one a chocolate chip banana and the other, a zucchini, for the oncologists I’d encounter after changing places with my husband. A tiny token of my appreciation for the people who dedicated their lives to children with cancer.

This is a side note, but over the course of nearly a year of treatment, I had never brought the oncologists or nurses gifts or homemade goods. I never offered flowers or thank you notes, as many of my own patients had done for me over the years. I was in the throes of my daughter’s cancer treatment and barely able to shower and get dressed. Still, my lack of outward graciousness, weighed heavily on my heart. I’d like to think that gratitude emanated in the energetic field of my badged, bloody, broken heart and wasn’t entirely lost in the actions and words I was unable to produce.

We were beginning the consolidation phase of June’s treatment which was the last of leg of the journey. Our family would no longer be separated for more than two weeks at a time. We were through the worst, and June had been declared no evidence of disease (NED). If there existed a safe time to venture into an unknown public space during treatment, it was then. It was while, despite June still being very sick, there existed so much hope. At times, I actually believed we could rewrite the future and a sliver of control was regained.

………………….

I dumped my items, including the fancy breads, onto the counter while my sunken eyes averted the cashier standing at the register.

“Is this your first?” she asked, scanning my items.

“Third,” I said, noticing her beautiful silver hair woven into a long braid trailing down her back.

“Oh, then you know what you’re doing!”

Relief. That was it.

She placed the items in a bag and I dragged my pregnant feet out the door. I hoisted myself into the drivers seat, tossing the breads beside me, and wailed hot tears into the steering wheel.

I had done it. I entered a space that wasn’t my house or the hospital or the obstetrics office. I saw people who knew nothing about me. I didn’t burst into tears or worse, flames, which in the hellfire of my mind was very possible.

I survived.

………………….

A few days later on my drive to the hospital, I stopped again.

This time, there was another woman at the register. I approached the line casting my eyes toward the floor. As I pulled my wallet from my pocket I heard someone exclaim from behind me, “This is her! The mom I was telling you about — ”

Do they know about June?

“It’s her third,” she said.

“Oh,” smiled the dark haired woman behind the counter. “I have three myself and I ran a Montessori school for many years while my children were growing up.”

I mustered a polite smile. Relief, again, that was it.

I picked up the brown paper bag from the counter. As I walked to the door, I lifted my pregnant feet so they didn’t make a scuffing sound on the floor.

………………….

My visits at the market went much like that over several months, except for the month I didn’t visit at all which was when we found out June’s cancer had returned.

………………….

Eventually, however, I made my way back because the market was there to stay and because I passed by it twice a day.

I was forty-one weeks pregnant, my oldest daughter was in school, and my husband was at work. I was no longer racing to return to June. She wasn’t waiting for me to exchange roles with her father in a hospital room anymore. She wasn’t at home with her grandmother, waiting for me to return from my obstetric appointment. Since June had been born, it was a rare moment that we weren’t together.

To shake the nagging feeling that she was somewhere still waiting for me, I filled the dead space. Mostly, I filled it with tears. I filled it by sitting on the couch in my pajamas and watching reruns of ‘Below Deck’. By answering the phone and listening to the person on the other end. I filled it by sitting in the quiet of the house and closing my eyes, searching for June in my third eye. Sometimes, I sprawled my heavy body in the rocking chair in her room and watched the orbs dance around on her ceiling. I filled the other bit of time Googling what orbs looked like and typed questions such as, “Could an orb be a deceased loved one?”

Then, when the dead space of just me filling it became overbearing, I wandered aimlessly into the market and saw the smiling faces of the two women from behind the counter.

“That baby has to come out soon!” they said in unison from the counter, as I stared longingly, immensely pregnant, at the wall of wine.

Then, I’d place my Pain au Chocolat on the counter and the woman with the silver hair would ring me up. My gaze sunken so low it threatened to pull me to the floor. I’d head for the door, galumphing like a seal in my pregnant body, clutching the little brown paper bag between my two flippers.

………………….

After I gave birth, I wandered in with my son. He was a few weeks old. The ladies fawned over him and remarked on his beautiful blue eyes.

“Like his older sisters,” is all I could say. Thinking of the swirling world that existed inside my beautiful June’s eyes.

I stood next to the stroller, teary-eyed, with a surprising sense of pride. I was a mother again. I had never stopped being a mother, but my son represented a new beginning, a fresh start, and for the first time, I felt it. I avoided the fancy breads, and purchased my usual pastry.

I loaded up the car with my new baby, then cried into the steering wheel as I had done on every occasion prior. I cried for June, who was gone. For my son, whom I couldn't figure out how to love. For my life that felt like a big open sore of a secret. For the suffering I wore in my eyes, my dirty hair, and yesterday’s clothes. For the shell of a human I had become. I cried for the life I didn’t get which I could see in the reflection of the kind smiles and shiny faces of the versed mothers from behind the counter.

………………….

Many days after June died my only ritual was to visit the ladies at the market. With each new day, I began to notice how good it felt to be cast in their portrayal of a mother’s life.

When eventually, I allowed their eyes to meet mine, I remembered what it felt like to just be a mom with a baby.

………………….

One day, as I sat crying in the parking lot, nibbling my pastry, there was a tap on the window. Brushing the tears from my eyes, I peered out to see the silver hair.

I froze.

I must have left something behind.

I cracked the window, “We just wanted to check on you to make sure you hadn’t fallen asleep,” she said.

Startled, I just stared.

“I didn’t want to bother you but we wanted to make sure you were okay.”

I’m not okay.

My baby died.

The cancer came back.

I have a new baby that I don’t know how to love.

“I’m making a few phone calls while he sleeps,” I said, gesturing to the backseat where my son laid awake, cooing.

“Ok, hun, glad to hear. Sorry for bothering you.”

You didn’t bother me. Without knowing what I have been through, you’ve still managed to make me feel seen and cared for. Thank you.

All the things I wanted to say, I couldn’t.

Instead, I rolled up the window.

June’s diagnosis stole my identity. Her death took my voice. But by creating new rituals, I wore my broken life and heart into something more tolerable. By leaving the house, I created new pathways that resembled comfort. In the loneliest of days, I forged new friendships and learned that at my very worst, I was still lovable and that life was still livable. I was no longer looking at a faraway life. I was living in the scene I’d always feared, but incrementally, finding solace.

I’ve taught myself so much since June died. Including to never underestimate the power of a mother. Then again, I’ve learned so much, too. Like to never underestimate the kindness of a stranger, either.

The Length of A Lifetime

A Poem

~2 min read

June, Christmas 2021 — photo by author

A lifetime
can be an hour,
a day, a week,
eighteen-months.

A lifetime
isn’t summarized
by the things we blindly consume
to fill the empty space.

A lifetime
is how the soul fills itself
by paying attention, listening,
loving, and learning to let go.

A lifetime
can be
the absence of time
once promised.

A lifetime is the pang
of hurt in the space
spanning from the last time
I kissed you.

One lifetime overlapping another
is a timely reminder
of its transience —
though the soul is vast.

One’s lifetime does not end
when the heart stops beating
for it bleeds into
surrounding lives.

The living carry
the deceased,
separated only
by the construct of time.

A lifetime is tapped into
by the soul, who ushers
past energies into this life, then out —
to forge a new existence.

A lifetime without you
feels endless —
Which some might say
is a gift.

Your lifetime made mine feel longer.
Because of you,
I can feel the minutes as they pass,
and long for those that lay ahead.

Your lifetime
was cut far too short,
But I hope,
that it still felt whole, to you.

The living will never understandwhy the duration of a lifetime.
What matters most is
your lifetime felt complete to you.

You arrived to this earth
intentionally
and did everything here
you were meant to do.

Sometimes, everything
can be accomplished in just
an hour, a day, a week,
or eighteen-months.

How My Daughter’s Death Changed My Relationship With Time

“I long for the innocence I once had as a child.”

June on her last Halloween — photo by author

“Picture yourself as a little girl. Remember what it felt like to be in your body and free of worry. Go back to that time.”

I’m in the yoga studio.

Immediately, I see June’s face. June, our daughter who passed away from neuroblastoma when she was eighteen months old, never experienced what it was like to be in her body, worry free.

I see the outline of her face. Her bright blue eyes. Her heart-shaped lips. The way her naked brow furrowed when she was mad. Naked because the chemo took every last hair.

Instantly, I see and feel the warmth of my daughter’s presence who is no longer with me.

………………….

I arrived to yoga ten minutes late because my son refused to buckle in the car seat. My daughter forgot her required socks for the gym play space. I didn’t leave us enough time for the variables that inevitably come with every venture out of the house. I turned the car back amidst my children’s screams in the backseat.

I stayed calm.

Just socks, I thought. He has to be buckled for safety, it’s the law. I rationalized my motherly decisions despite knowing they were right. I never yelled or sped to make up for lost time.

I hate time. I know what you must think: It’s because I don’t know how to manage it which is partly true. But the reason for that is because I’m constantly trying to persuade time to work in my favor. I’m trying to squeeze a little more out of each minute. Because I know one day the minutes will end.

Like on the days when it’s 3:35pm and I am rewriting a paragraph of an essay. My daughter’s bus arrives at 3:39pm. I’d rather have the extra two minutes to write, and then sprint to the bus, than lollygag my way there without claiming the minutes before as mine.

I fill the minutes of my day as if I am shoving cotton in an already filled-to-the-brim stuffed animal. Nobody wants a pawless bear. Usually, there’s cotton overflowing and trailing behind. Proof that each minute was lived to its fullest. A fluffy reminder of the minutes I seized.

………………….

Stephen King wrote in his memoir ‘On Writing’ that the best time to write is when you don’t have time. As I work with time, not against it, I gobble it up with urgency. The minutes feel that much more crucial and therefore, satisfying when I work until there are virtually none.

When I live devouring the last few minutes of every activity, I digest each individual one.

It doesn't stop with writing, however, because I have applied this concept to my entire life. Consequently, by the end of the day, I feel as full as the minutes I packed and fluffed with writing, listening, playing, cleaning, cooking, praying, meditating, dancing, sleeping. Trying to enjoy every minute as if it were the last. Bitterly aware that moments do eventually become one’s last.

………………….

But then, “It’s just yoga,” I thought with a deep sigh, as I set out for the gym with my kids in tow, for a second time.

Time. Oh, sweet time.

………………….

I unrolled my mat and threw myself into the last minute of meditation before the physical work began. I needed another 60 minutes of meditation to gather my composure, but one sufficed.

Tears pooled under my closed eyelids after hearing the instructor’s words. They bubbled with cool, quenching pressure as I squeezed them further shut. I didn’t want the instructor to notice me crying because I was new to the class. I feared audible sobs as the music changed to a familiarly painful, yet cathartic song. Purifying, vulnerable tears trickled onto the mat.

The mere thought of childhood innocence made me cry. It perfectly encompassed everything June was before the brutal cancer treatment. It also encompassed everything that was taken from me when she was diagnosed.

Since I cannot recreate a worry free childhood memory, my mind wanders to what my little face looked like. My round features. My bleach blonde hair.

As I peered in on the little girl from the yoga mat, time stopped. We stood face to face. I stared into her eyes. We existed together. We were one and the same.

We both knew June. It was the little girl I once was that I so often called upon after she was diagnosed. I saw her in the reflection of June. I wondered odd things like how would she have lived differently if she knew her daughter would one day be diagnosed with cancer? I imagined someone telling her that her future daughter would have cancer and would die. I tried to imagine her reaction as I watched the innocence drained entirely from her life.

“I’m so sorry,” I whispered into the empty dark space hovering above me as I laid on the mat.

“For what?” the little girl asked.

I didn’t want to scare her, despite knowing she, too, had lived the unfathomable.

“Pain, anguish, and heartbreak will become fast friends, but you’re worth more.”

“Heartbreak?” It was the most unbearable.

“Use it to help you fulfill the person you were meant to be.” I said. I was trying to prepare myself for the worst. If I began with the little girl, maybe we would both be more prepared for when June became sick. As if time was not linear.

………………….

Later, after yoga ended, I conjured a memory of myself as a little girl who ran on a beaten path through the woods. The wonderment in my eyes shone as brightly as the green leaves in the spring sun on passing trees.

“Sassafrass!” I tore a leaf from a sapling, crumpled it in my palm and lifted it to my nose just before I leapt over an exposed root. I closed my eyes, inhaling the sweet lemony smell. For a second, I saw infinitely. I never saw cancer.

I was carefree.

I long for that time.

………………….

My longing has grown more deeply with age. I long for old friendships that have come and gone. I long for the future and the past.

I long for the days I spent with June and to watch my oldest daughter grow into the beautiful woman she will one day become.

I long for more time with June before she was diagnosed. For more time with her thereafter. To have those last two weeks of her life back before we knew the cancer had returned. Before we found out she would die.

Daily, I long for hope and peace of mind.

But mostly, I long for more time. If I didn’t have hope or peace of mind, it wouldn’t matter if I had more time with June.

Time is the most valuable currency in life.

More time in the day. More time with my kids. More time to do the things I love. More time to cook a simple meal. More time to phone old friends. More time to deeply sleep. More time to enjoy the little things we don’t have time for.

Just, more.

………………….

I remember the adult I was before June was diagnosed. I rushed to work so I could pump in the car in the dark in the parking garage before start of my nursing shift at the hospital. I rushed because I wanted to spend an extra few minutes breastfeeding June, rocking her, before I left. Because it was so hard to pull myself away. I’ll never regret waking up at 4:30am to spend those mornings before work with her.

After work, I hurried home to see my two girls before they fell asleep. My nursing shift was 12 hours, but usually ended somewhere between 13 and 14. When I pulled out of the parking garage, it was as dark as it had been when I had arrived. The entire day was gone.

Even before June became sick, my body knew the value of time in relation to my children. Time away from them made me feel selfish for working.

“Can I return to work after Christmas?” I once asked my boss after giving birth to June. I knew the response. I’d already used up my three months of unpaid family medical leave.

Without any choice, but to likely lose my job, June attended her first day of daycare exactly three months after she was born on December 22nd.

My heart broke.

“Why won’t the government mandate more time to be with our babies?” I said to a coworker in the breakroom as I scrolled photos of June the daycare had sent. Tears forming in my eyes.

Time.

………………….

I think of the little girl I once was. The last bit of naivety she retained and carried into adulthood was the notion that there was always more time.

Then, I was told June had cancer and quickly I watched the span of time disappear. I was reduced to one unbearable moment. I could no longer imagine a future.

I try to recreate what my life was like before June had cancer. It’s a wound I attempt to heal, but it’s no use, it’s butter on the burn. It’s a bandaid when I need stitches. Regardless of how I care for myself, there will always be a scar and the purity of my motherhood will forever be tarnished.

But I haven’t given up. So, I thread the needle, on the mat, and practice connecting my broken heart to the life that exists around me. In many ways, it’s a new life for the same, more damaged me. I lean into it. Befriend it. I acknowledge it which gives me temporary relief. I tell it, “I see you,” because that’s what everyone else is doing these days.

I see you fear.
I see you anxiety.
I see you sadness.
I see you, there, alone.
I see you suffering.
I see you broken heart.
I see you chaotic and destructive thoughts.
I see you death.
I see you time, vanishing from beneath my chin.

By acknowledging my broken heart, I lend myself a bit more time to just be me.

The Physical Ailments of Grief

A Poem

1 minute read

June — photo by author

Grief sits like decay
in the bottom of my lungs
where the light of day
doesn’t shine.

Shallow breaths can’t
reach the pools it’s become— 
Petri dishes
bubbling with lost time.

My lungs threaten to collapse — 
Longing for more breath, 
they wring the last of air: 
a self-inflicted death. 

It wasn’t my intention to die,
but grief has taken over — 
My mind, my well-being,
crumble under its pressure. 

The hurt keeps multiplying
a black, tarry substance
invading innocent tissue,
festering like disease.

As I wonder, if the stridor
I heard in my lungs last week
was just another one
of my body’s pleas. 

To let go of the grief — 
The ugly, sad, tumultuous 
black pockets 
of dis-ease.

It’s difficult to separate 
Death’s clingy shadow
from my heart, 
both which envelop you.

Instead, I brace 
for the physical ailments
the incessant pains,
the bodily aches. 

As my mind reminds me to, 
“Do the right thing.”
“Take care of you.”
Eat, sleep, hydrate, walk. 

Seems simple, but when
the all-consuming side of grief
infiltrates me, 
I don’t see it so clearly. 

It is those days without choice,
I wade into the murky pools 
and sit in my grief. 
I wait for your light. 

Warmth overcomes my senses.
It is only when I surrender,
that I know what to do: 
I begin to wait for me, too.

My ailments are a byproduct 
of insurmountable grief,
but I am not who they are,
and they are not me. 

My Daughter Shines Her Light Into My Life With the Number 22

“This is how we keep June alive, every day.”

Our daughter, June, was born on September 22, 2020. Prior to that day, I had attended church only a handful of times. I rarely prayed. I had no firm religious or spiritual beliefs. I questioned my own spirituality and relationship with a Higher Power. I glommed onto other’s experiences and tried them on for size.

Maybe I’ll pray while kneeling at my bed tonight.
Maybe I’ll attend church on Sundays.
Maybe I’ll try meditating.

I’ve always been an all or nothing type of person, and the idea of believing in a Higher Power felt impossible, almost sinful, if I wasn’t in the very least dedicating my Sunday mornings to worship.

That was until my Chilean host-sister shared with me that I was the church. I could be anywhere in the world and pray. I was my own sacred four walls.

That was before June was diagnosed with cancer.

When we entered our new reality, that June had stage IV neuroblastoma, we embarked on an eighteen-month treatment plan with no guarantee she would survive. I fell into darkness. Life outside of a hospital room ceased to exist. I folded into myself, nearly collapsing. The foundation of my belief system which had been made from a thin concrete had many holes and cracks. I stopped believing in anything and ignored it while caring for June.

More recently, I’ve learned that during the time of regression when I lived in a permanent state of fight, flight, or freeze, there was a deeper process occurring. While my outside world went dark, my world within began to flourish.

While deep in the trenches of hell, I built a stairwell in my church. Later, I would use the steps to climb, crawl, and slither myself up and away from the ruins the cancer left behind.

………………….

June relapsed and died ten months into treatment. Immediately, I stopped wondering where I stood on the spirituality spectrum. In part because to go on living, I had to believe in something — anything, really. Mostly, I was desperate. The worst had happened to me as a parent, and if I didn’t find a reason to live, I might have died too.

The reason I survived is because of what my spirituality provided me with: hope. The two had always been intrinsically tied. The beliefs I unknowingly cultivated during the course of June’s treatment, surfaced after she was gone, and lifted me from bed each day.

The walls and stairwell in my church were stained with death’s ash. Suddenly, as my soul cried out, mourning June, the ashes filled the empty crevices in my foundation and hardened. It was the exact moment I knew there was a Higher Power because June began to send me signs.

………………….

The day June was born, my grandmother reminded me that my newest baby shared a birthday with her son. A great-uncle whom June would never meet. He had passed away several decades before at an untimely age.

“I hope she has better luck than he did,” my grandmother said before we hung up the phone.

A sentence that would later haunt me also became the reason I was infatuated with numerology.

Did his birthdate dictate his life’s outcome?
Why was June also born on the 22nd?
Were the two related?

………………….

The number 22 flowed into and out of our lives from the day June was born. In the months after her delivery, we isolated indoors during our first Covid winter.

Many memories of June’s first winter were spent watching the Disney movie ‘Soul’. I’d breastfeed June with my three year old daughter snuggled next to us on the couch. The three of us watched it one-hundred times that winter. If you’ve never seen it, I won’t spoil it, but the movie portrays a near-death experience, the discovery of the soul, and the main character in the movie is a soul named ‘22’.

………………….

2022 also happened to be the same year that June died. Feels like a fateful exchanged etched into a soul’s contract when a person dies on the year that shares the same number as the day they were born.

In numerology, the number 22 is considered a ‘Master Number’. A Master Number is one of the most powerful numbers symbolized by an extra strength presence in the cosmos. The number 22 is meant to connect us to our spiritual plane and find the purpose of our existence. It is no wonder, that after meeting June, both of those things have come to fruition in my own life.

Feeling the energy of the number 22 will drive you to use your most precious talents to leave a lasting legacy. This is a summation of the influence that my number 22, June, has had on me. For example, I started writing again after she passed away, something I hadn’t done in over a decade. Something I had lost, but found again, thanks to June. I write to heal and to honor her everyday. I write to keep June’s legacy alive.

………………….

In my every day waking life, I find the number 22. When I began to see through the fog of grief for the first time after June died, the number 22 appeared everywhere. It was a near constant reminder that wherever I went, she went too.

Most often, I see the number 22 on a license plate or a road sign. When it pops into my sphere, I always consider what my last thought was just before I spotted the number. It’s my spiritual roadmap. I value it’s significance. I receive it as a universal response to what had just passed through my subconscious. 22 brings deep thoughts to my conscious mind. Ones I may never have acknowledged as they flowed in and out of my brain on my drive to the grocery store or gym. Many of my ideas for a story are affirmed by the number 22.

Many times, the number 22 appears while I am in a doom spiral. It has the power to pull me away from fear and anxiety by reminding me that I am not alone. A fearful thought followed by seeing 22 is a quick bridge to more positive thinking. For example, if I am worrying about my health and a negative thought such as “I might die” comes to mind, but then I immediately see the number 22 on a license plate in front of me, I am reminded that I am protected and June is with me. After seeing 22, my fear usually dissipates and I am able to consciously replace the terrorizing thought of death with a mantra such as “I am healthy”. I repeat it until I forget what it was I was worried about.

Other times, I use the number 22 as a guide. It’s not a determining factor, but for example, when we decided to move and began to search for homes in Maryland, the number 22 presented itself in the very first home I toured. I never envisioned living in a home such as that first home, but after seeing the number 22 on the address, I remained open-minded that perhaps the road could lead there for our family.

It’s no coincidence that it lead directly to the neighborhood we now live in. If you peek out our bedroom window in our new house, you can see the first house I ever visited whose address ends with 22.

………………….

We don’t take numbers lightly in our household. Whether it’s a number at the top of a receipt, a strange or coincidental occurrence that happens on the 22nd of a month, a road sign, or a rabbit with the number 22 tattooed in it’s ear at the fair, we find it, we see it, and we bring ourselves consciously back to June.

When we drive, my five-year-old daughter points out every number 22 she spots. It was the first double digit number she was able to read and voice. Every time she says, “Mama! 22!” we both smile and say, “Hi Junie.” We are creating meaning. June lives on through 22 and therefore, through my daughter and our family as a whole.

This is how we keep June alive, every day. We assign meaning to the very evident signs in front of us.

The number 22 is especially important because some days no one speaks June’s name in our household. School, activities, visits with friends, and staying present in our daily lives may not allow us to travel back in time to June. It doesn’t mean that every day we don’t think about her. The moments when the number 22 graces our lives are precious because we are reminded to say June’s name aloud. In that instance, she lives with us in the present time.

………………….

I will forever follow the path of number 22. She is my northern star, my cosmic beauty, my effervescent golden baby. June shines her light into my present life using the number 22.

After June died, I searched high and low for meaning. I visited with mediums and psychics who were not able to give me what I was seeking which was to have my baby back in any form. In the days after she died, I cried out in the night, begging for her to send me a sign that she was not forever gone. The response to my pleas was silence. The frenetic energy surrounding finding the baby I had just lost so unnaturally clouded my vision.

Turning inward and listening to my intuition taught me to rely on myself and to not search for June in others. I began to draw from the skills I learned while we were going through treatment. When I did, I was able to see what had existed all along such as the patterns and numbers in my waking life.

Instead of shutting off my brain because ‘I must be crazy’, I leaned into it. I lost my daughter to cancer, surely, things couldn’t get worse.

I share this now for those of you who need a nudge to lean into your daily meaningful experiences. The ones that are sprinkled and take root all around you, often unnoticed.

………………….

22 is the tip of the iceberg. It’s only one of the signs I see. There are many more. In that same first home we toured which was newly built and staged, there was a book called “Honest June” in the back of a closet. Just one children’s book in the entire house. The same house with the address that ended with number 22.

It’s also not a coincidence that the license plate on my daughter’s bus starts with 22.

Or that just after I finished writing this story, I went to a nail salon where the woman doing my nails whom I had just met asked me if I had any children.

“Two.”

Intrusive thoughts about losing June flooded me. My eyes wandered the salon, scouring white walls and hanging plants, looking for refuge in number 22.

As the nail technician pulled a box of polish from the drawer and set it on the table, I thought, “I’m so sorry I left you out this time, June.”

Just then, I noticed my number 22.

A physical presence may be lost, but a soul is never truly gone. We forever energetically live on.

It is up to us to keep our loved ones alive, to find meaning, and to believe in what our eyes see. For in this belief system, we give ourselves the hope we need to claw our way out of hell and to live our best life after losing someone we love.

For many months after June died, I searched for the signs which finally appeared when I was weary, frustrated, and hopeless. When I felt like giving up. They gave me hope which helped me to practice patience. Today, I don’t always have to consciously look for the signs. I’m not beaten down when they arrive. I find the energy flows freely and directly to me whether I am asking for it or not.

Every morning I wake up in my church and I am alive. I thank my Higher Power for giving me this day. I tell June how much I love and I miss her. Then, I open my eyes really wide and just believe.

The Receptionist Lied and I Have Medical PTSD

“What it’s like to live my life in the light and the dark after losing my daughter.”

Summer Island, Maine - photo by author

This week, I received a lovely birthday gift. For the first time since we moved in April, I have school for both of my children. As a mother to young children, when school synchronicity begins, you cram every living thing you have needed to do for the last six months into the first few child-free days you have. Unfortunately, for me, ‘every living thing’ includes doctor’s and dentist’s visits.

These appointments may be no-brainers for most moms, but not for me. I am a mom who has PTSD. My daughter June died when she was eighteen months old from neuroblastoma.

My reality is that I just spent three months trying to avoid bringing my son to the doctor for a simple lead test.

I rescheduled a much-needed dentist appointment twice in the last three months and risked the dentist dropping me as a patient.

The dentist, the doctor, and the medical setting all trigger the PTSD in me.

………………….

After finally scheduling the lead test for my son, irrational worries based on very rational thoughts, began to bubble from below.

“What are they really going to tell me when I bring him in?
Could they know something I don’t?
Wasn’t his nose running last week?
Does he always cry out in his sleep?”

The moment I think of bringing my children or myself to the doctor, the lens of sickness lowers itself over my eyes. I start questioning the health of my children and myself. Everyone looks green and on the verge of vomit.

On more challenging days, the lens of sickness transforms itself into a doom spiral. When I’m deep in a doom spiral, I’m internally scrolling over traumatic events of my past. Usually, I lose all control and cease to function ‘normally’ in my life. I’m paralyzed by the fear of the unknown. I can’t fulfill my motherly duties.

I did not intend on spending my birthday week, a sensitive week since June died, in a doom spiral. I never wanted to wake up on the first day of the last year of my thirties on the verge of a mental breakdown, but that’s where I was heading.

Whenever I have a planned ‘trigger’ on my calendar such as a doctor’s appointment, I dovetail it with an enjoyable activity so there’s something to look forward to if and when I doom spiral. The enjoyable activity helps me look beyond the paralyzing event. It helps me see that life continues on the other side. It coaxes me not succumb to the anguish of the trigger.

It’s me leaving a light on for myself before I embark on the treacherous journey ahead. A torch burning outside of my home. When I leave in the middle of the night, it will help me to return through the dense, dark woods just before daybreak. I am always my weakest and most likely to give up just before the journey ends. The light provides me with hope when I’ve lost the path ahead.

………………….

Two days before my birthday and one day before my son’s lead test, I pull my levothyroxine bottle from the shelf in the bathroom. It rattles two measly pills. The label: No refills. I’ve done it to myself again. I’m almost out of my medication, and to refill it, I need an updated thyroid stimulating hormone (TSH) level, which requires a blood draw. The ball and chain of hypothyroidism.

It occurs to me that, perhaps, I could grab a blood draw while I’m at the office the following day with my son (our two doctors share an office). Instead of the feeling of doom, I usually get, I feel excited at the thought of killing two birds with one stone, especially when the birds are the trip to the doctor. Forget the stone. I’d pummel those birds with my fists to only have to go in once. This is survival.

Because my birthday is a celebratory day, one that bodes a deep appreciation for my life, I decide it’s the perfect end to two torturous doctor’s visits and something sufficient enough to look forward to. My torch.

It’s all going to work out.

I call the office and ask for a blood draw for myself before or after my son’s appointment.

“I’ll see what I can do and call you back,” says the receptionist.

………………….

A few hours pass. I’ve forgotten the dread of the doctor until the phone rings.

“Hi, it’s the office of–”

“Thanks for calling me back!” I’m still elated about the heavy, jagged rock I’m equipped with and ready to throw.

“So, the doctor wants to meet in person to go over your lab results.”

“Why? My labs were drawn four months ago.”

“She thinks it would be a good idea to have a conversation face to face because some of the results were outside of normal range.”

“She told me she would call if anything were outside of normal range, FOUR MONTHS AGO. Why didn’t she ever call me?!”

“I don't think there is any cause for concern–”

“I need to know what labs were out of range, RIGHT NOW.”

There I was: doom spiraling.

“Lipids were high.”

“Lipids?! So she needs to see me in person; WHY?” I demand.

“She just thought it would be a good idea to do a follow-up. You can talk to her about your thyroid then. We will do a blood draw after you speak with her.”

“Speak with her about WHAT, exactly?”

………………….

In my doom spiral, I was suddenly dying. My body ached. I felt a pain in the upper right quadrant of my abdomen. It was surely my liver shutting down. I broke into a cold sweat. My heart raced. Maybe because I was going to have a heart attack related to my new diagnosis of high cholesterol. Whatever it was, I had no more doubts; I was certainly on the decline. The bruise on my upper thigh from walking into my son’s dresser was REALLY blue. It had bruised so easily; was it too easily?

Wait, is this denial?

Have I been in denial all this time?

These were similar thoughts I had after June was diagnosed with cancer. I questioned myself and my ability to mother. I questioned my reality.

We went from the nonexistent, living an ordinary life, to the existent: a grapefruit-sized tumor growing in June’s tiny eight-month-old abdomen.

Life changed in a moment without notice. My entire life was vacuumed into the ethers.

………………….

When June was diagnosed, my perception of reality was warped. I couldn’t trust myself any longer. My eyes and brain deceived me. They didn’t allow me, an actual nurse in my day job, to see what was so blatantly obvious: my child was deathly ill.

I once read that the antidote to anxiety is not calm; it’s trust. When I stopped trusting myself after June was diagnosed, my anxiety threatened to swallow me whole. Similarly, when I stopped trusting my doctor the day I believed I had slipped through the patient cracks, my anxiety made me question my own health. I also questioned my sanity.

When the doctor’s office returned my call, it was as if I was taken in the night blindfolded. It happened so quickly that I couldn’t light the torch before I left. There was only darkness at the end of the tunnel.

The worst kind of doom spiraling is when there is no light at the end. When the only light begins to feel like it is death. Thoughts like, “What’s the worst that could happen?” emerge. When the answer is death, and you are able to reconcile with it being so, you have epitomized the doom spiral. “Maybe it would just be easier to die than live like this,” you think. The only blip of relief inside the spiral.

………………….

In the hours after the conversation with the nurse about my labs, I planned my funeral. I texted close friends and family about my new predicament.

I thought of everything I had yet to teach my children, which begged the question, “How much time would I have left?” My children would surely go on living without me, but I needed to teach them so many important things about life without having their Mama around. Regardless of how much time I had, it would never be enough.

If you ask a 100-year-old person, “Is there ever enough time?” I imagine they might say, “Time is the only currency you never trade for anything else.”

………………….

I decided the doctor overlooked the red flag on my labs. She probably sees fifty patients in a day. She also knows my PTSD history. Surely, she wouldn’t call me into the office if it wasn’t the most utmost serious condition.

My brain stops working in the doom spiral. It’s as if nobody is home. The woods have become the jungle, and I am fending for my own life. The only thing I can do properly is manage to stay alive by placing one foot in front of the other. There is so much light around me, but suddenly I’m blind.

In the midst of my panic, I almost forgot about my dentist appointment.

I should get in the car, but instead, I crawl over to the living room rug. I lay down. I‘m frozen. I am in child’s pose, box-breathing. I need a paper bag because my breathing pattern is more like hyperventilation. I stay in child’s pose because finding a paper bag is too great of a task. I’m alone.

I roll into the fetal position and stare at the wall. I sob. I think about June. I think about our life together. I think about my children without their mother. Makeup is running down my cheeks and into the light blue carpet. Smudges of bronzer traveling in tears stain the rug.

I can’t get up. If these are the last days of my life, how will I live them to the fullest when I can’t even get off the floor?

This is post-traumatic stress disorder (PTSD).

………………….

I make it to the dentist. They shoot my gums up with Novocaine. “This will make your heart race for a bit,” the hygienist says.

My fatty heart may now actually burst. My heart has been leaping out of my throat since the doctor’s office called a few hours ago. I try to stuff it back into my chest by deeply swallowing over and over. In the end, the shots of epinephrine to my gums only squeeze out more nervous tears.

“Are you doing okay, hunny?” The hygienist asks.

“Hard day.” The last two words I’m able to say before the chiseling and drilling begins.

Tears run down my cheeks, seeping into the hair on the back of my neck as I lay in the chair. The drill in my ear lures me further into my doom spiral.

………………….

When I arrive home, I crawl onto the couch, “What’s wrong with you?” my husband asks.

“I’m not well.” Half my face is numb. I have a wad of gauze in my left cheek where I bit off a chunk of my cheek when they gave me the final instruction, “bite down”.

What’s wrong with me? I am living my last days on earth.

………………….

I toss and turn in the night. It occurred to me that the appointment I scheduled to go over my labs was for Friday the 13th, which was also the day after my birthday. No torch at the end of a long, dark tunnel, a bad omen, a seal of my fate. I had to reschedule.

My husband says he will come home from work early to watch our son so I can get the appointment over with.

As I drive to the doctor's, I look out the window at the trees. I think about how they would keep growing after I died, and their leaves would return to their summer green.

I look at the other cars on the highway and wonder which cars also have sick people in them like me and June.

………………….

In the waiting room at the doctor’s office, I wonder if the nurses behind the desk are whispering about the news I’m about to receive. When I am called in, I imagine there will be another person in the room, like a social worker, to mediate the conversation after the doctor reads me my fate. Just like there was when we were told June had cancer.

I close my eyes and pray. Tears dribble down my face. I thank God for the amazing life I’ve been given. I tell the Universe how grateful I am to live every minute of it. Even the most excruciating minutes, like those of June’s final breaths.

………………….

They call my name. The two Ativans I popped in the car before entering the building are starting to work. I remain calm. I find it odd when the nurse who escorts me to the exam room asks me what I am in for. Didn’t he know? Didn’t the entire office know?

The doctor comes in, looks at her clipboard and then back at me. “I see here that you wanted to go over your lab work,” she says.

“I thought YOU wanted to go over my labs?”

“There was nothing concerning on my end; your labs were all within normal range.”

The light in my brain flickers back on. Pain turns to anger and then turns to ease.

Suddenly, I can see the glass of wine I might enjoy on my birthday the following day. I can imagine inhaling the tops of my children’s sweet but stinky heads after a long day of school. I imagine finally rolling out that pita dough I made and put in the fridge two days before. In a matter of milliseconds, I go from dead to alive.

I am slowly exiting the doom spiral.

………………….

In twenty-four hours, I relived the anticipation of being told my life was about to change forever. Your comforts of knowing are no longer yours.

In my doom spiral, I explored every last nook and cranny of death. I had to. I could only feel my way out.

It is exactly what I did when June was diagnosed with cancer. When my reality broke. When my world went black. I crawled around in the dark, hoping someone would save me by saving my daughter. By curing her cancer.

I know what it is like to not be saved. I know what it is like when no one can help you.

………………….

PTSD can be really odd. Today, on my birthday, two hours before my alarm, I woke up alert and peaceful. I made a hot cup of coffee. I sat down on the couch. I counted my blessings. I wrote this story. I watched the sunrise.

Just yesterday, I could barely lift myself from the floor. Today, I have so much more life to live and give.

Sometimes, to the outside world, there’s nothing rational about our thoughts as pediatric cancer parents, although another person’s irrational thoughts may be very rational to us. Rational or irrational, it’s all subjective.

For example, my irrational thoughts tell me we only have this life. The rational ones say that despite leaving this earth, June is still alive.

What’s rational to you?

Whatever kind of day it is, rational or irrational, doom spiral, or PTSD — It doesn’t matter when it all goes away. In fact, it leaves the opposing force of beauty magnified in its place. It makes the torch shine that much more brightly. It comes with a price, but it makes the enjoyable activity feel like absolute heaven.

Today, I turn 39, and thanks to yesterday’s darkness, I’ve never felt more alive.

The Epitaph

June - photo by author

22
The day you were born
September
Virgo-Libra —
The Cusp
of Beauty
tied invisibly
to Death’s Door.

Two dates
inextricably
woven into every
holiday, birthday,
calendar day —
of a mother’s life
once her child dies.

13
The day you died
March
An unimaginable day
in mother’s mind —
One built from
strands of sickness
amongst plans
of longevity.
An untimely
bookend to your life.

Have you ever known
two months,
six months apart,
to parallel one another?
Inscribed by the anguish,
were the days,
that once promised
you life.

Happiness
surrounding the day
you were born
permanently torched
by the day
you died.

A mother’s womb
left to ache
forever
for the cremated baby
she once
gave life.

The month you were born
may as well be
the month you died.
Interchangeable
remains of
death’s thick residue
coats mother’s eyes.

Mother says
she now understands
why the tombstone
reduces life to
two single dates —
the day
one was born
and the day
they died.

Mother mourns
in the closet
cradling a box of ashes
pondering the part of
an epitaph
meant for
the survivors —
On your stone
she would write,
“I will love you
every single day
for the rest of my life.”

Grieving The End of My Childbearing Years After Losing My Daughter

“I’m not sure I want another baby and time is running out.”

Searching for sea creatures -- photo by author

“How many children will I have?” I ask Isabel, my Chilean host-sister, over video chat. She’s in her kitchen in Chile deliberating my future with each tarot card she gently turns, analyzes, then reads aloud. I’m 3,500 miles away, standing in my kitchen in Maine, unshowered, in a t-shirt and underwear. It’s nearly noon. My two kids are in daycare. We are supposed to be moving from Maine to Maryland and I haven’t done a thing.

Isabel flips another card.

I’m lightheaded with anticipation of her response. The laundry list of things I should be doing, like packing, is weighing on me, but I can’t stop focusing on whether or not I will give birth to a fourth child. I turn forty next year. I’m obsessed with whether or not to try to conceive before I’m no longer able to do so, or by societal norms, become too old. Personally, forty feels like the top end of desirable for me to carry another child. Aside from my eggs growing older and less viable by the second, there’s an entire galaxy of complications and emotions surrounding the life of my daughter June.

Pregnancy feels risky, almost dangerous. I feel like I shouldn’t have more children after our eighteen month old daughter, June, died from cancer. It also feels like June dying is the exact reason I should allow myself to have one more.

Invisible pressures emanate from both inside and outside of my body. I try to only pay attention to the fickle ones that come from within and formulate imaginary boundaries.

As in, the one where I’ve decided if I haven’t had a child by the time I reach forty, then I will no longer try. Or the one where I decide it’s best if I let the idea go and just love the two healthy living children in front of me. Usually, it’s that same rational voice that scolds me for being so selfish for wanting another.

I fluctuate between creating boundaries and counting how many days until I reach my fertile window in my period tracking app. I live on high alert that my child bearing years are waning with each pass of the moon.

Like a phase of the moon, my cycles will wane until one day there are none left, only darkness. The curtain will close on the act of my life when my body created humans.

A moon wanes until finally it’s in complete darkness where it then becomes a new moon. If my cycles were like those of the moon, then once my ovulation has waned to nothingness, technically, I’d be new. Darkness and newness are places I am familiar and comfortable with. The label ‘new’ even feels a bit exciting. Could I be like the moon and still be ‘new’ after my childbearing years wane?

………………….

I once heard someone quantify time in “summers”. For example, a child may only have eighteen summers, from the day they are born, in their parent’s home assuming they move out at age eighteen. This signifies only eighteen summers together before the parent becomes an empty nester. Upon hearing this dismal way of breaking down the years, I apply it to my own life because at times I like to step into and out of my own darkness.

I think about June. She had one summer. Two, if you count the one she spent in utero while I was on bedrest. Most of that time we laid outside in the beating midday sun, half naked. I’d like to think that tanning my bulbous belly didn’t give her cancer.

There exists a shared insecurity around why June had cancer and died, something I’ll never understand, and why I want to have a fourth child.Something I also can’t quite put my finger on. Yet, the two feel undeniably linked. Linked by grief.

Aside from still deeply grieving June, lately, I’m grieving the transition out of the stage of my life when my body created her. A time when there was never any promise of children, yet existed the hope. Like when I suffered a miscarriage, but remained hopeful for another chance at creation. I’m grieving the hopeful, naïve person I once was. I’m grieving the life I didn’t have as a mother. I am grieving what I went through when I lost all hope the day June died.

Saying goodbye to my childbearing years is reminiscent of the permanence I have come to dearly know of losing something I will never get back.

………………….

When you break down the years into summers they feel vastly shorter. As if the future vanished the exact moment you considered it. A fleeting memory distinguishes the true brevity of life.

Everything in the past becomes a memory whether it’s one summer or eighteen. Each can be reduced to a thought. It’s the only living proof that time is not linear. In our memories, years can be combined to a split-second. We live the present in minutes, hours, days, weeks, months, and years only to have them diminished to the briefest of thoughts. What’s your longest memory?

There is an upside to this. I can think of many instances at once of time spent with June. Many different smiles or facial expressions she had, at one time. I can think of her laughing and the smell her skin. The scent of June is also a memory. If I can remember her laughing, as I tickled her on the couch until she threw her head back into the cushion giggling uncontrollably, while also remembering how she smelled, it’s proof that I can experience multiple memories at once. Sheer, nostalgic beauty. It brings so much heartache, but days I have nothing, just darkness, I still have the memories.

Then again, when you think about the human life and potentially experiencing eighty-five summers (if you’re lucky), in a world where we add everything up, and eighty-five falls on the backdrop of millions of years, time becomes a riptide.

………………….

After absorbing the summer theory and applying it to those I love, I apply it to my childbearing years.

Huge mistake.

I might only have one.

No different from the one summer June was alive which has now been reduced to a snapshot in time. One I’d give my soul to have back.

If I have one summer left, that means I may only have twelve more moons before perimenopause (if I’m lucky). One more summer of fertility which equates to twelve lunar cycles. At this point in my life, it’s the most inconceivable idea surrounding conceiving I’ve ever considered.

………………….

“Three children,” Isabel says.

“Three?”

“It’s not clear if you’ll have three children or if it’s three living children.”

I have three children altogether. I have two living children.

The cards give me zero clarity as to what I am supposed to do with my life. I wish the cards would just decide if I will have another baby. I wish someone would tell me if I am making the right decision by wanting another baby. There’s an uncertainty that plagues me since June died. My freewill and innocence died, too.

I would never regret having another child after losing June. The flesh that is my baby is the purest form of love I could ever imagine. It took me losing June to understand love and living in love is the most important thing in my life.

June, completes my third child, but is no longer here. She was my second born. My ‘middle’ child. I hear other’s talk about their middle children. They say things like, “Oh she’s totally my middle child,” or “she’s my biggest personality, definitely the middle child,” and every time I think, “Is that how it is? Is that how it was supposed to be?”

Ultimately, I always wonder, “Would June have been like that?”

I’d give anything for June to be the middle child. June was never given the opportunity to fulfill the role because she passed away eight weeks shy of her baby brother’s birth. I will never fill the hole that exists in our family between the first and the last. If we had a fourth child, it wouldn’t bump my third to the second and fill that gap.

………………….

I am thirty-eight and three quarters years old. The “three quarters” isn’t me insisting my age as a toddler might, “I am three AND THREE QUARTERS.” Although, half-years and quarter-years begin to matter as we get older just as much as they did when we were young. In realizing this similarity between the young and the old, the young grasping for more years, the old grasping for more time, I might just have a toddler-style tantrum about it.

………………….

I plan to live every year, as if I know it can only get better. I hope the pain and suffering of my thirties melts away. Hard lessons have etched me into the stone I’ve almost become this decade. I’ll spend my forties remolding the statue that life wanted me to be. I refuse to succumb to the representation of what my past experiences might potentially have the power to make of me.

“Are you going to try for another?” A common question amongst mothers my age. Societal perception. Moms trying to suss out other moms. No different from how I suss out my future in the tarot reading. We all want to be told what to do. What we can handle. Naturally, we compare ourselves to our peers.

The question of another child is often an emotive conversation inadvertently overflowing with personal information mostly coming from me.

Like when I tell select mothers about June.

I know the question has nothing to do with June dying of cancer because many of the mothers I’m meeting for the first time. They don’t know she existed. A micro-heartbreak within itself.

If I don’t tell them about June, I simply respond with, “I don’t know, how about you?” For a moment my response has nothing to do with my past or my future, just me being a ‘regular’ mom. This hurts more than telling them about June, but I’ve learned it doesn’t feel good to make moms cry at the playground.

At times, I imagine my feelings of wanting another have nothing to do with June. Perhaps this contemplative threshold exists for other woman exiting their childbearing years. I know that I am not alone and that millions of mothers cross from their thirties into their forties, and at one point or another, share similar thoughts.

………………….

Pregnancy isn’t the last thing we might consider as a maturing woman, however. I once read that a woman’s most ‘attractive years’ are their thirties because they are established in a career, have discovered who they are, possess confidence, and still have the glow and dependency of a monthly ovulation. Well, isn’t that the icing on the end-of-ovulation cake?

I’d like to not believe it, but it makes me reflect on days when my husband tells me how beautiful I am and I know I’m ovulating. It’s usually the only time of the month he asks if I did something different with my hair or if I changed my make-up, and usually I’ve done neither.

………………….

“Picture your Thanksgiving table in ten years, what does it look like for you?” A girlfriend’s OBGYN once asked her.

When I picture my family, I imagine my three beautiful babies sitting around the dinner table, talking, laughing, connecting. They’re older, but they’re still my babies.

One of my babies in that equation died.

My family will always be complete, but it may never feel whole because while I have had three incredible little creatures, there are only two I can physically account for.

When I expressed to my therapist that I feel selfish for wanting another, she disagreed. “I think it shows how much love you have to give. There’s still so much love between you and your husband after losing June. It feels hopeful.”

None of which I could disagree.

………………….

I know another child may or may not be in the cards. Clearly, the cards want me to determine that for myself. As I should. At the end of the day, I’ve got one summer or twelve moons, to decide because I turn thirty-nine in two weeks.

Despite the ambiguity of the cards, three children or four, there’s no way to truly know except to live. While I do, I intend to appreciate every last ovulation this body has to give me.

Summer Island Through the Lens of Grief

Photo by Author -- Fishing at Sunset 

Mama’s screaming

in a borrowed bedroom.

Crying behind closed doors,

where no one sees.

She wants Summer Island

to alleviate her heartache —

She offers her pain

to the choppy, broken sea.

Saltwater soaked siblings,

white bums on a beach.

A vacuous space between them

only Mama’s eye can see.

Jagged, rocky

coastline —

A sister screaming

“Mama, please!”

Younger brother —

deep blue eyes,

blonde hair sprinkled

with sand fleas.

Grandfather —

plucking an orange lobster

black speckled shell,

from a muddied, rusty trap.

Band it!

He commands the granddaughter

who pinches the carapace

as claws attack.

The ocean like glass —

Sunsets behind the harbor,

cast pinks, oranges, reds —

true watercolors.

Blueberry patch

behind Aunty’s house —

purple stained fingertips,

remnants of the devoured.

Scaly palms from

freshly caught mackerel

shimmer like the salt water

glistens in the sun.

Rose Hill Cemetery —

Next to relatives headstones

where sister asked,

“Is this where my sister could be?”

Mama replied,

“She’s here. In the trees,

the sky, the waters.

She’s in the air we breathe.”

Summer Island is where

Mama believes

if she opens her eyes wide enough

her lost child, too, might see.

Mama says she sees

through the lens

of the grief

she carries.

That there’s

a shiny side

to heartbreak

and grief.

Says, it’s the reason

she deeply feels

the beauty

she sees.

Says, “Treat it as a gift

because not everyone

sees the world

through the lens of grief.”

My Daughter’s Central Line Was Her Lifeline

“‘CareAline’ became my version of a lifeline.”

Our daughter June laid still on an operating table awaiting the placement of a Broviac-Hickman dual lumen central line. Her eight month old body was riddled with cancer. Just two weeks earlier, I had found a tumor in her abdomen. A day or two before the line was scheduled to be placed, we had received the diagnosis that our precious girl had high risk neuroblastoma.

The line entered June’s chest cavity wall, curling up over her clavicle, and protruded from her dainty neck creating a silhouette of plastic tubing before it dipped back down into the subclavian vein and disappeared from sight. It was positioned perfectly next to June’s heart where it would deliver toxic chemotherapies created for adults with cancer, but titrated, so they didn’t take June with them when they left her system. It would deliver continuous morphine and antibiotics. Later in treatment, it would provide June with the nutrition she needed when her body didn’t have the strength to wake itself from slumber. During transplant she slept for a continuous week, twice.

There were too many days in the last year of June’s life when the only interaction she had with the outside world was through what the line actively provided to her, and every ounce of love I could energetically squeeze from my cells and give to June. At times, I can still feel my cells are in denial as they continually wring out every last bit of love for June, despite her being gone.

The central line after June was diagnosed with cancer became a lifeline.

………………….

If you’re anything like me when it comes to your children, managing and caring for the last little bit of the umbilical cord before it turned black and fell off was enough of a worrisome task. I constantly fretted that the scab caught on the onesie as I lifted it to change the diaper. Blood! Should I clean it? Cover it? “Where did I put that hospital paperwork with the care instructions?” I’d think as I rummaged through the changing table.

I should mention, I’m a nurse, but when it came to caring for my children’s wounds, the lights in my brain flickered and went off. The reaction to my children’s potential pain left me virtually inept.

The day I found the last little bit of black umbilical cord, as I sorted darks from lights on the floor in front of the washer in the basement, was the day I could finally breathe. That was it. It was the end of the worry.

“Should we save it?” I too eagerly asked my husband later that evening as I pulled a Ziplock baggie out of the kitchen drawer and dropped our firstborn’s bellybutton scab in it. His face contorted at the thought, while my face beamed with novice parenthood naivety.

It was a rhetorical question because of course I’d save it. It represented the first bit of pain and suffering my daughter and I had endured together. A scab trophy. A symbolic sliver of proof that my child was once physiologically tied to me.

One day I’d staple the baggie to her baby book so she could have it, although likely, the treasure would be lost on her. At least, until she herself became a mother and realized the weight a tiny umbilical scab could carry.

The umbilical cord that once attached June to me was her first lifeline.

When you only have the delicate, yet important, motherly experience of caring for a bellybutton scab, try to imagine the horrors of caring for a central line.

Apprehension peaks just after laying the child atop the changing table while unsnapping the onesie and carefully lifting it over previous wounds to reveal the latest and greatest.

First, it was the umbilicus.

Then, it became the central line.

………………….

There are aspects of a central line that don’t compare to anything else. Unlike a healing belly button on its worst day, you can’t ignore it until it goes away. Quite the opposite, you must nurture and give it attention to sustain your child’s life.

A central line becomes a baby of its own that requires individual care and attention apart from your child during a time you are devoid of energy.

Like a ship with only a hull, I was empty and exposed. Every floating fragment which I passed by throughout the day spilled into me with the sea and sank me deeper. Before nightfall, each day, I was inevitably drowning, again. One day in life of pediatric cancer was too much for this mother ship to sustain. When June received her line it was like a layer of concrete on the floor of my hull.

A central line is a lifeline. Ironically, a central line, when not properly cared for, is also a death line. I carried the burden of June’s line with me as I floated aimlessly awaiting a beacon in the sea of pediatric cancer.

A beacon, I was sure didn’t exist.

………………….

The day June was in surgery receiving her central line, my husband and I sat huddled together facing the door in her hospital room. We were told someone would visit us with instructions on how to care for the line.

A nurse practitioner rapped on the door, walked in, and sat down in front of us. She handed us a book which she instructed we take home and keep in a highly accessible place. She suggested we study it, and in the very least, keep it near for reference. We spent about an hour reviewing it together.

An hour which I could only think about June and when she would be finished with surgery. The inherent and incessant need to be with her at all times became my life.

We reviewed the key points.

No matter what, if June had a fever of 100.4 F or higher, it warranted a call to the oncologist. It might signify June had an infection related to the plastic foreign body sitting inside of her vasculature. A bacterial infection was life threatening. Protocol was to take zero chances.

I had yet to open the pediatric cancer textbook that was given to me when June was formally diagnosed days before. I imagined this one joining that one in the lightless closet in my kitchen on the somber shelf of denial.

“Keep it out of and above her diaper line,” was one of the last ominous instructions the nurse practitioner gave us.

………………….

When we returned home, I carried the dense handbook upstairs and pushed open the closet door in the kitchen, as planned. I slid the book onto my repurposed bookshelf and shut it behind me. I walked back downstairs to greet June and my husband as they entered the house.

I carefully unclipped and lifted June out of her carseat. She shrieked in agony. I cradled her in my arms up the stairs and to her room. Gingerly, I laid her down on the changing table as I had done so many times before, but this time felt reminiscent of the day we brought June home from the hospital for the very first time. It was as if I were meeting my June in her new home, all over again.

I gazed down at her, my beautiful baby fresh from surgery, as I very slowly and very carefully lifted her tiny shirt just as I had once done when her belly button was still clamped, only seven and a half months before.

The new version of me was meeting the new version of my baby, both of us brand new.

I was reduced to the hull.

The line was hideous. It was angry and unnatural. It was sutured into her impeccable infant skin.

The doorbell rang. Later, when I eventually opened the door, I saw a large cardboard box which was filled with heparin and saline flushes, green antiseptic caps, alcohol pads, gloves, and yellow Kelly clamps.

As I placed each supply in an individual bin and slid it onto the shelf next to the handbook and pediatric cancer book in the closet, it occurred to me that one day I might have to accept this as my life. I carried one small bin of mixed supplies upstairs to June’s room where I organized them on her changing table.

The line, which came out of June’s chest, split into two long white plastic tubes, called catheters, which when they were loose, dangled just below June’s waist. The catheter ends were closed with a special tip called a lumen which prevented bacteria from entering the line. In nursing school, we referred to the lumen as the “hub”. June had two lumens, which was useful for delivering more than one medication at a time.

It was only a matter of hours before one of June’s diaper changes that I noticed the lumens sitting inside of her diaper.

My eyes darted for alcohol pads on the changing table. I tore several open and began to ferociously “scrub the hub”. Had anything entered the lumens? How could I possibly know? I couldn’t see microscopic bacteria! I’d have to wait and watch for signs of infection.

I cried.

I couldn’t bear to live with myself had I put June through something extra and unnecessary.

I taped the lumens up, away from her diaper. They didn’t stay. I stuck an adhesive clip that was given to us in clinic on her midline to the left of the umbilicus, and fed the line into it, snapping it closed over the rubber tubing. It seemed to work.

Then to my dismay, several days later, the adhesive started breaking down June’s skin. An open sore became visible at the edge of the tape. We were due to begin chemotherapy. Soon she would have had no immunities to heal a wound such as the one left behind by the fastener.

Each week in clinic, the nurses and I brainstormed other ways to finagle the line away from her diaper. We tried moving the clip to a less angry area of skin. It gave June’s skin temporary relief until the irritation began again.

‘Temporary’ is the mantra of daily life with pediatric cancer for better and worse. I wish I had understood it then how ‘temporary’ applied to life.

Each time June went to the bathroom, panic set in.

Sometimes the line would fall out of the clip and hang outside of her onesie. I’d readjust it so it didn’t get yanked out.

Every time I set her down, I’d feel for her line. Before I lifted her up, I’d check for the placement so I didn’t pull it out. I feared she might pull on it herself.

The line was a constant, nagging stressor. As if June’s cancer diagnosis wasn’t enough to be concerned with, the line constantly challenged me. June depended on it to complete eighteen months of treatment, but I couldn’t envision how it would survive those eighteen months. Especially, as she grew more mobile with age.

A few weeks into having the line, I Googled “How do you secure a central line from coming out of baby’s clothes?” and a few sites populated.

I didn’t expect to find something that existed for my exact problem. I idiotically assumed if there was a solution, I would have already been given it.

The remedy I speak of is called CareAline, which, amongst many things, included a wrap designed specifically for tucking central lines safely away on the body. They were designed specifically for children with cancer.

With astonishment, I reread the site. I couldn’t believe that there was a family making products like this for children like June. I clicked on and scoured all the links on the page. There was a video of a mother discussing why she and her partner started the business of CareAline.

I wasn’t alone.

There were others.

Other moms with children who had cancer.

Other children like June with neuroblastoma.

There were people who walked this brutal path and suffered at the same obstacles June and I had. With pediatric cancer, the obstacle is the only way forward.

CareAline became my version of a lifeline. For me, a hopeless mother, I had my first tool to prevent my child from acquiring a preventable bacterial infection that could kill her.

………………….

I purchased several CareAline wraps. Immediately, the wrap reduced my concern for infection when the line no longer threatened to dive into June’s dirty diaper or fall out of her clothing and get caught or torn by little baby hands, or by Mama’s big hands, as I lifted June’s fourteen pound body for the one-hundredth time of the day.

After June died, I’d find the CareAline wraps in drawers or boxes of doll clothes, scattered throughout the house. My older daughter used the wraps on her babies when we no longer could wrap them around June.

………………….

A year after June died, I volunteered at a bereavement retreat for those who have lost a child to cancer through an incredible organization called Rett’s Roost.

I said goodbyes to the familiar faces I’d met since June’s departure, and gathered my belongings which included an enlarged framed photograph of June I’d brought in with me for the altar of children who had been taken by cancer. I stepped out onto the porch where a couple stood in the corner talking. I hadn’t yet met them. We exchanged hellos, and in the same breath, the man told me the photograph of June in my arms reminded him of his daughter.

I held up the photo for the three of us to admire.

They said their daughter had the same beautiful and deeply wise eyes. She, like June, had passed away from neuroblastoma.

When I learn another parent has lost their child to the same exact devastating disease as I have, I stay. I linger. I engage. When in front of me stands another person who actually understands what June and our family have endured, I try not to wrap my arms around them and smother them with my tears and rage. Although, I know they get the rage. The natural spring of endless tears. They have suffered alike. Have dreamt. Have hoped. Have abandoned all faith the day their child died.

Yet, here they were.

They were alive.

There is nothing in the world like meeting another person who has the lived experience of the most devastating loss and still chooses life.

………………….

It was their first bereavement retreat with Rett’s Roost. Their daughter had passed away over ten years prior, and they were working on gathering resources for families and placing the links on their website.

“What’s your site?” I asked.

“It’s spelled Care-A-line,” the woman said. “We offer PICC sleeves and central line wraps for kids — ”

“You make those?” I asked, stunned as my world with June collided with my present day.

“Yes,” they said in unison.

A beacon.

There I was, broken and alone after I’d lost June. Suddenly, standing with very first people who, unbeknownst to them, helped me understand that I didn’t have to fight June’s cancer journey alone. They had been a part of my and June’s life for years.

………………….

When I was alone with June and her terrifying new cancer diagnosis, the panic-inducing line, and the new books on the shelf that felt like concrete when I’d pull them out, in a world turned dark, I was offered a tool to help me cope with the circumstances.

The wrap arrived in the mail. I pulled June to me on the floor and hugged her to my body. There were no more guarantees in life. I placed the CareAline wrap around her tiny chest. Then, I slipped the double lumens into the skinny pocket that was designed perfectly for them.

The wrap was more than just a piece of purple or blue fabric. It symbolized hope. A sudden ledge which appeared in a vast ocean when the tide had momentarily drained. I pulled my hull onto it for temporary relief. After temporary reprieve, I’d be able to keep going.

Then, I made dinner for the first time in a long while. I felt so much love and adoration for June as I watched her play that wasn’t shrouded in fear. My worry had been replaced with hope. It allowed me to be mom and have a break from being caregiver.

“June, we got this baby. We got this,” I said.

And for the first time since the doctors told me she had cancer, I truly believed it.

………………….

Meeting the incredible people who created CareAline after June passed was more than just a meeting, it was a design in itself by destiny.

It wasn’t a matter of coincidence. It felt as if the universe wrapped itself around me and whispered in my ear that I was exactly where I needed to be. Faith reappeared in the wake of losing June.

“Thank you for what you did for me and June and for families like ours,” I said through tears. “I could never properly express my gratitude.”

The memories of June and I sitting on the living room floor stacking cups in the last months of her life replayed in my mind. Those carefree moments in the midst of chaos were what kept me going.

Those moments were everything.

I’ll never get that time back, but I’ve got the memories forever.

It excites me to think that new memories, which have yet to be made, might have everything to do with June.

Meeting the couple on the porch at the bereavement retreat makes me believe that despite June being gone, she’s showing me everything will turn out exactly the way it was meant to be.

Reliving the Anticipation of My Daughter’s Death

“If I could have a sliver of June, I wouldn’t discriminate, even if it was the feeling that she was going to die.”

In the opening scene from the Netflix film The Deepest Breath you hear a woman’s heartbeat as she free dives over three-hundred feet to the bottom of a weighted line. The light blue waters turn dark and eventually blacken. Her heartbeat slows as her organs crumple under the weight of the water. She brushes against death as she dives to the end of the line. If you listen closely, you can hear it in the faintness of her heartbeat.

Lub dub. Lub dub. Lub dub.

The sounds in the first scene are reminiscent of the beginning months of life when a baby is inside her mother’s womb. The free diver exists in the similar underwater ambience of a mother’s resting heart rate. Watching her free dive to her own heartbeat epitomizes how delicate the line is between life and death, as her heart rate slows to a near stop.

The heartbeat is significant for us all. It’s the first sound we hear as developing fetuses. After birth, our own heartbeats follow us even when we cannot hear them. Often, in our daily routines, we forget about our beating hearts. The heartbeat is an indicator that there is still life in the vessel that is the body. It’s the last sound I searched for in June, our eighteen-month-old daughter who passed away from cancer, as I placed my ear to her chest after her last breath.

………………….

In the film, competitive free divers descend a weighted line into the depths of the ocean while holding their breath. They use no equipment besides a specialized wet suit and a diving hood. After diving over three-hundred feet down a line into the ocean, they attempt to resurface, following the line back up to the light. Often, they black out just moments before reaching the surface. They’re so physiologically tapped, they’re unable to reclaim their first breath of air in over three minutes. The air their bodies require to survive the dive. The oxygen deprivation causes their bodies to shut down while a flurry of safety divers grab onto their lifeless bodies to resuscitate them, all while still swimming. In some cases, a wasted moment spent pulling a diver out of the water could mean the end.

If I could sum up June’s treatment in a feeling, I would play the first scene of The Deepest Breath. I’d ask everyone I knew to watch at least the first five minutes. After that, I would understand if it was too unbearable to finish. The first scene is sufficient enough to evoke the horrific and lurking feeling that plagued me throughout June’s cancer treatment. If it’s as distressing for you to watch as it was for me, then you’ve gained a fragment of insight into my life.

It’s the same feeling I’d get when I had to check June’s pulse after walking out of the bathroom and being away from her for only a couple minutes. She’d be completely drained of color, and sleeping so soundly, that I couldn’t distinguish a rise in her chest. Or worse, when the nurse came in and felt it necessary to do the same to June who was asleep in my arms. For the nurse, her own mother holding her wasn’t convincing enough that she wasn’t dead. The nurse needed proof in the pulse.

It’s that recurring feeling, if you’ve never felt it before, of needing to find a heartbeat on your baby who may or may not be dead. Death was a reality we faced every day June was alive after her diagnosis.

………………….

For days, after watching The Deepest Breath, I replayed the scenes in my mind as my life and the film blended. I couldn’t shake it. I tried to talk to my husband about it, but he wanted to forget it. I couldn’t blame him.

Imagine, you were offered a tiny slice of your deceased child’s life back, but you weren’t given the option of what that ‘slice’ would be. Would you still take it? Could you imagine that it might be the feeling of what it was like to watch them die? The brutal anticipation of their very death?

For me, that’s the feeling I get when I watch The Deepest Breath.

………………….

After watching the film for the first time a year ago, I recommended it to many friends. I snuck it into random conversations. Feels cruel now, but I did it to not be so alone. Likely, to loosen the firm grip it had on me. Loneliness crept in after watching the film, as it often did during June’s life, to accompany the fear. For days, I sat alone in the feeling the film gave me. Like grief, the feeling overcame me both voluntarily and involuntarily.

While picking up toys off the living room floor or standing at the kitchen sink washing dishes, my body floated to the feeling of watching June endure treatment which was elicited by watching the free diver dive. The feeling was addictive, so I’d pick up more toys. I’d pluck dirty dishes out of the dishwasher and hand wash them, just to stay, standing in the feeling a bit longer. I almost liked it. It brought me back to when June was alive, despite it being triggering and traumatic.

If I could have a sliver of June, I wouldn’t discriminate, even if it was the feeling that she was going to die.

………………….

A feeling of knowing overcomes me as I watch the free diver valiantly swim and then glide into the depths of the ocean. They, like us, can’t just turn back. It’s too dangerous.

At a certain point during descension, a free diver’s body becomes neutrally buoyant, when the lungs and other airspaces in the body compress. That’s when the diver begins to sink. Free divers call this ‘free falling’. They liken it to flying. It, too, sounds addictive.

I don’t relate to the desire to dive. I can’t hold my breath underwater for more than a short ten seconds. I don’t like swimming. I’m fearful of the water. A doggy paddle is my best stroke. Perhaps, in part, that’s why this film is so terrifying.

The familiar feeling I get about June while I watch the free divers, however, is one I imagine the divers get every time they commit to diving the line. It’s fear, but not just any fear. It’s a familiar fear. More specifically, it is the fear of going to the edge of death and then coming back, just as the free divers do. Just as June did throughout treatment.

“The way I’ve heard it described,” the clinic nurse said to me before June’s first stem cell transplant, “is that they bring them to the edge of death and then slowly pull them back.”

………………….

The free divers’ parents watch from the water or from the television as their child takes the deepest breath. Three-hundred and fifty-seven feet without an oxygen tank, wearing voluntary weights to help pull the diver deeper into the ocean. They dive along a cable because it’s easy to become disoriented. They kick until the darkness disguised as lightness carries them to the bottom of the weighted cable. The Devil disguised as God. To the edge of death and back.

Over and over, these divers choose to do this. Their parents, if asked, would choose they didn’t. Now, I choose to watch them. It is reminiscent of watching June. The terror. The anxiety. The perpetual panic. The heroism found in staring death in the eye, as it beckons their hearts to beat a little slower.

………………….

Throughout treatment, I watched June brought to the edge of death and back. Much like the diver, she changed every time she sank into the abyss, then resurfaced. It was notable upon her return. Her eyes dimmer. Her smile weaker. Physiologically, she was more disabled than before she went.Much like the divers bodies after repetitive trauma to their organs.

Every dive for June was deeper. Every dive more dangerous. The damage irreversible. Like, when June went in for surgery, or another round of chemo. As in the time when she completed tandem stem cell transplants. June did not choose this. We, as June’s parents, chose this for her. We lowered the cable. Treatment was disguised as the cure. We sent June to the edge of death with only hope that she might return.

If the free divers’ parents thought the free dive would save their child’s life, then they might also reluctantly choose it for their child, despite knowing the outcome would forever change them all.

………………….

I wish I could have gone with June during her dives. I would have given anything to have swam next to her the entire way. What did her mind tell her every time she went under anesthesia? Every time a doctor cut into her on a table? Did she go to a space filled with darkness or lightness? Was the edge of death peaceful like the divers described? Was it quiet like the ends of the ocean? A place beyond pain? Where did the pain stop and euphoria begin? Was there ever euphoria for June? I pray there was.

These lines I cannot delineate because I was not beside June during her deepest dive. I was waiting on the surface. I am only June’s mom. I could only watch her take the deepest breath. I couldn’t take it with her or for her, as every parent to a sick child at one time or another wishes they could.

As I watched her, I cheered her on. I waited on the surface with my hands tied, counting the seconds on the clock. Praying she would resurface. The medical responders diving to meet her on her way back also had their hands tied. They, too, could only wait. She’d have to do this alone. For herself. By herself.

Then, hopefully, they’d deliver her to me.

I’d dip my face into the water in anticipation of her return. The water was blurry and the salt stung my eyes. Those were my eyes after the endless tears I cried. Panic set in as the moments slowly ticked by. There was nothing I could do to speed up time or change the outcome. June would have to come home by herself.

I was June’s home.

Before each of June’s dives, before handing her off to a stranger disguised as a nurse, I kissed her goodbye like it was the last time. I held her warm cheeks in my hands and placed the tip of my nose to hers. We locked eyes. I inhaled her sweet breath. I told her how much I loved her. I kissed her one last time. Tears dribbled from my eyes.

Then I’d wait. At the bedside. In the waiting room. Other times, on our living room floor, where I cradled her near lifeless body after another round of chemo, waiting for her to survive her most recent dive.

From the surface, I’d wonder every time, was she coming back or had she gone to the edge and off to the great beyond?

………………….

I’d like to imagine that when you reach the edge of death, you can see and feel life reverberate inside of you. An illumination of life’s culmination of beautiful, broken, joyous, regretful, and utterly sublime moments. An entire lifetime resounds when you reach life’s precipice. I’d like to think it is the most magnificent feeling you’ve ever felt.

Maybe that’s what the divers attained with each dive.

But with repeatedly returning to the edge, it can be too much for the heart to bear.

The near death euphoria ultimately causes the heart to burst.

I’d like to believe the euphoria took June.

Grief Made Me Time-Travel

“I haven’t felt this alive since June died.”

Old friends in a high school hallway on the night of our 20th reunion — photo belongs to author

In the months after our daughter June died from neuroblastoma, I sat in a plastic chair on our stone patio, in the far corner of the yard facing the wood line behind our house. It was spring in Maine. With exception of the birds chirping and the occasional passing car, it was quiet.

The most important people in my life don’t exist in these memories, such as my daughter, who was three years old at the time, or my husband who was likely working. June was gone. The only person I can truly account for on those days was my son who repeatedly stretched his legs and pressed on my ribcage in the tight quarters my belly had become.

I sat alone in despair, on the patio, watching the still boughs waking from a long Maine winter, waiting for a sign. 

I’d once read that the relationship between a human and a tree is reciprocal. A tree admires the human as much as the human admires the tree. It’s an unsung energetic exchange. I admired the trees. I begged them to notice me. A fragment of their energy might heal me in ways I knew I couldn’t quite understand. 

Before June died, I’d rarely thought about the trees. 

With both feet on the ground, I studied them while waiting for a cardinal to appear. The cardinal’s fleeting visit signified I’d go on living. A glimpse of a red wing was enough to carry me through the next few hours, into the evening, to bedtime. It signaled that June was there, watching, and waiting. She had never left. It reminded me to continue speaking to her even though she had gone, and to not allow my hopelessness to cloud my sight of what mattered most. 

I scoured the branches for the hopeful red until the little veins in my eyes bulged and the whites burned.

The cardinal reminded me that I was still June’s mother and that in an infinitely existing dimension, she needed me. She needed me to be strong for her older sister and younger brother, who also needed me. I’d like to think June needed me to be strong for them. I’d really like to think that somewhere, even in a far away space, she still needed me to be strong for her, too. 

………………….

The veil between life and death is like a pane of glass. It might be frosted for some on earth, but once you’ve made it to the other side, you can see for all eternity. There is no future or past. Everything exists at once, you just can’t ever go back. You must move forward. Maybe June and I existed together on the patio. June in her forward life. At the occurrence of the thought, I’d stop crying, remembering she couldn’t come back. That my pain may be causing her pain. Life and death were divided by a pane so paper thin that it had to be hand blown. 

There is no greater gravitational pull than that of being needed by your children. 

Here or not. 

………………….

When June was alive, I promised I would never leave her. As a parent, you make these sort of ridiculous promises. You don’t question where they originate, but it was likely in your bones because that’s where you feel it when you close your eyes. Nothing could ever come between you and your child. Nothing, I vowed to June, would separate me from her as we sat together on a hospital gurney. I made these promises to June, knowing I would some day die, and be forced to leave her. We would deal with that later though, like, forever later. 

Although, forever was not the forever I’d learned about as a child. When June had cancer, forever became eighteen months, the age June was when she died. Forever dwindled to months, then weeks, then days. Forever was diminished to one minute — the last minute of June’s life. 

There was no permanence to forever. Turned out, it was not exempt from the confines of time, but as long as June and I were both alive, I knew I would never leave her. That much was true. 

These hollow promises that I’d learned as a young mother, after June became sick, were never implied, but as long as this isn’t our only life, it’s a promise I intend to keep.

………………….

In my uncomfortable body, in an even more uncomfortable world, I sat in searing quiet. At one and the same time, I was on the precipice of life and the precipice of death. 

That’s when I fetched my Bluetooth speaker and began to scroll. I knew exactly where I needed to go. I blasted music that had nothing to do with my sadness, but everything to do with my grief. 

Scarface, Q-Tip, T.I., and Jurassic 5 boomed explicits over the speaker. Common, Nelly Furtado, and of course, Nelly, polluted the spring air. I played a Roots song called “Right On” over fifty-times in one month on Spotify after June died. Chingy came on from time to time, bringing me some comfort. I can’t think of an artist less ‘comforting’ than Chingy, but there we were. Me, Chingy, the trees, and the coveted cardinal. 

I time-traveled, floating on the beats of the music, over the ripples of an existential crisis, and deep into the black well of grief where I surfaced to find myself reliving my high-school experience. This is likely an unsettling concept for most, but not for me. After your child dies of cancer, high school looks pretty shiny and good. I relived conversations, and flirtations. I pondered interactions that I’d had with old teachers. I tried to put names to unforgettable faces. 

………………….

In what I now refer to as my ‘high school phase of grief’, I relived the past to temporarily fill the hole. To get through one day, or maybe just make it to bedtime.

All while, waiting for a visit from the cardinal. I’d weep when there wasn’t one. I’d sob when one appeared. 

Sometimes, it rained and I’d sit without an umbrella. Mostly, the March and April days were cold and raw. The raindrops on the swollen, exposed areas of my pregnant body reminded me that I could still feel. That my nerve endings still worked.

………………….

Nerves became a serious topic after June was diagnosed with cancer. The cancer grew in June’s nerve cells. Maybe June’s nerve cells never functioned properly. I know they caused her a lot of pain and suffering. Phrases like, ‘on my last nerve’ and ‘quieting the nervous system’ are like a blackout curtain. 

At the mere mention of a nerve these days, I’m out.

………………….

Through the music, I reconnected to a life that had slipped away without me ever acknowledging it.

I longed to return to that time. A time before marriage and kids. A time filled with micro-heartbreaks of friendships or relationships ending. A time before June, but most importantly, the time before she existed and then, ceased to exist.

It was at the woodline I began dialing old friends numbers to check in. 

“That’s what you’re good at Taryn, bringing people together,” a friend once said. “You’re the glue.” It felt like a burden then. It feels like a gift now. One I know I cannot waste because of how short this life is.

“La vida es tan larga, Taryn,” my Chilean sister Isabel said after I complained to her about how short life felt. Life is so long. “There is so much more living and loving to be done. So many more layers to uncover.” 

A refreshing perspective. One I needed to hear. One I think all fellow bereaved parents need to hear when they are hanging on the edge of their child’s death, waiting for the fall.

………………….

One day, I woke up and the luster of reliving my teenage years had subsided. It became an afterthought, so I let it go, but the nostalgia that filled me after losing June, remained. 

I often wondered if other mom’s also time-traveled after losing their babies. 

………………….

Two years after June died, I received an e-mail about my 20th high school reunion. 

Eagerly, I RSVP’d. 

………………….

The night of the reunion, a friend and I pulled up to the clubhouse on a small golf course where most every Junior High dance of our lives had been held. It hadn’t changed in almost thirty years. 

I wore embellished shoes that sparkled in the setting sun as we walked from the car to the main entrance. 

The room was bare with the exception of a group of tables boasting plastic table cloths. There was no DJ. The waitstaff, which I had imagined passing hors d’oeuvres, were nonexistent. There was a blank screen, the same one that I had presented my senior humanities project on, that hung at the front of the room. It felt promising. There was a laptop in the corner behind it playing music from the early 2000’s over a large speaker. There was a cash bar in the far back. 

“We just took shots in the car,” an old friend said to me as we stood around a table writing our names on tags.

Swathes of people stood mingling in the warm afternoon light. I stepped from one face to the next, embracing those I hadn’t seen in two decades. 

The lights were never dimmed. We never danced. We barely ate. There were no superlatives or slideshows.

But the set up and scenery didn't matter. What the event lacked was made up with the fact that hardly no one ever sat down. The three hours flew by. Hugs, laughs, and tears were shared with the familiar faces of the past. 

If nostalgia had an enemy, it would be the clock signaling the end of an occasion. I said goodbye to faces I’ll likely not see for a long while.

………………….

For what felt like a second, I was back in the bosom of my high school compadres. I showed up as myself without regret and hid nothing of who I had become after all these years. I am a culmination of life’s losses, but I didn't show up in emptiness. I felt full as I shared about June. When people asked me what it is I do, I explained that I write about her and what it’s like to lose a child to cancer. I write for other mothers, like me, who feel so alone when their child dies. For mothers who are searching for a story, or just proof that another human endured childhood cancer and lived to see another day.

Several old friends shared with me that they followed my blog about June. We cried when they said it had helped them cope with their own child loss and struggles. I could see and feel the losses in my friends. For a sliver of a second, our losses fused and we weren’t alone. 

For three hours, life then and life now, coexisted. 

For one night, I time-traveled. 

………………….

After the event, we returned to a friend’s house where we sat at a round table reminiscing of the evenings offerings. At the end of the night when we had sufficiently analyzed every situation and counted every missing person who didn’t attend, the topic of meeting each other, twenty-six years before, arose. 

“I remember the first time I met you,” a friend said. 

It was then, I knew I wasn’t the only one who time-traveled. 

The grief I carried for June after losing her, pulled me back to high school, and likely saved my life. At the time, I couldn’t understand it, but after the reunion it’s much clearer to me now.

Grief and nostalgia are so intricately entwined. Grief isn’t solely about a major loss like my loss of June. It’s bigger than that. It’s about the series of losses we all experience in our lives. There is so much grief in life’s transitions, such as that into adulthood. Nostalgia is the magic dust we sprinkle which has the power to bring us back. To momentarily erase the grief.

We all have it stashed somewhere on our person. 

You know, the dust.

On a separate note, I’ve been left wondering, can you call it time travel when it feels as if you’ve never left?

That’s the way June feels. 

That’s the way it felt to be with my compadres on the night of our 20th high school reunion. 

I’d Lie to the Pediatrician If It Meant I’d Survive

“This is trauma.”

The carrot: A trip to the beach in southern Maryland — photo by author

I thought about skipping my son’s two-year wellness checkup. We’d moved from Maine to Maryland a month before his second birthday.

Eagerly, I canceled his prescheduled checkup in Maine via the patient portal. “See ya never!” I said as I slammed the laptop shut and walked away. It was the least traumatizing patient portal visit I’d had in years.

Traumatizing pediatric experiences were setting like the sun in the backdrop of my life. With it came a feeling of calm, almost peace, because those Maine pediatrician visits would likely never rise again.

It’s not personal to the pediatrics practice. Once, I had considered applying to it after nursing school, but then our eight-month-old daughter June became sick. She was preliminarily diagnosed with cancer in the outpatient clinic, which sat in a building adjacent to where I took my kids for all of their sick and wellness visits. They shared a parking lot. The same lot I had driven June into and parked on the day we were told she might have “CHILDHOOD CANCER.” The two words I could see etched in the air around the pediatrician’s head after she’d spoken them. In order for me to process them, I needed to visualize them. To understand what she had just told me, I had to painfully spell the two words out in my mind.

Now, here we were in Maryland, in our new home, beginning our new life. A life I wished would lend only to healthiness and minimal doctor’s visits for both my husband and I, and our two and five year old kids.

What harm could come from skipping my son’s two-year wellness checkup? He wouldn’t start daycare for a while and was up to date on his immunizations. I knew he wouldn’t carry MMR to the local playground, so why not skip? For now. I’d eventually take him. I’m a traumatized mother, not a terrible one.

“He needs an appointment,” my conscience nagged.

“A good mother would follow his check-up schedule,” it said.

“A good mother would put her trauma aside and do what’s best for her son by finding and calling a damn provider.”

But I couldn’t.

I mothered June, who was diagnosed with cancer at eight months old until the day she died at eighteen months old. I showed up for every appointment. I laid awake her entire life trying to sort out ‘today’s’ problems, which were many. Initially, it was what was wrong with her, then it was if she would survive treatment complications, and ultimately, the anxiety that treatment wasn’t working.

During hospitalizations, I sprung from bed at every beeping alarm, throw-up, or messy diaper. The thought of another person caring for June in the simple ways I could provide care, such as changing her diaper or cleaning her up in the middle of the night, petrified me. My sheer existence and self-identity were as June’s caregiver.

Without her, I was nothing. With her, I became nothing, too. I was an amoeba crawling toward the next task demanded of me. One, I’d eat up for survival, day or night, in order to feed my broken motherly soul.

I didn’t just consume the day’s tasks; I also poured every ounce of loving energy I had into June, who I feared might die. As if my willpower was enough to keep her alive. So, in the fade of the green and white lights coming from the machines to which she was tethered, I’d hover over her, cleaning, changing, talking, telling, willing her to live.

“I love you, June,” I whispered one hundred times a night.

What if it was the last time?

………………….

The week our son turned two, I finally brought myself to Google pediatricians in my area. It was anxiety-provoking. I scoured online reviews. I slammed the laptop shut and walked away again and again.

Finally, I settled on a practice with only one pediatrician. It felt strange that a large practice would only have one pediatrician, but for that exact reason, it felt safe and new. I didn’t need doctors and their multiple wandering eyes putting their noggins together to determine anything about my children. I needed one. I needed new. My memory of bouncing from pediatrician to pediatrician just before June was diagnosed funneled me into this decision three years later.

I requested the appointment online, which also felt safer than calling an answering service. I can still hear the music playing from our children’s pediatrician’s answering service in Maine. I can see myself standing at the kitchen sink, the only place I’d have perfect cell phone reception. I’d hang on to the melody as I gripped the edge of the sink. As if one of them would suddenly become my savior. I’d listen to the melody that became our life while hanging onto the sink that kept me standing upright.

………………….

To my dismay, the appointment was confirmed. I requested it just far enough out that I would not have to go in right away but not so far that I would have to live in purgatory very long.

Each morning thereafter, I’d wake up in our new home and wander downstairs. The calendar on the counter beckoning me toward it.

My eyes traced from today’s date to the date of the appointment. I’d count the number of days until the appointment, reminding myself to breathe deeply, in and out. I’d talk myself through the process of bringing our son to the pediatrician. I’d try to imagine what it would be like. Sometimes I’d enter the address in Google Maps to see how long the drive would take, and other times, I’d plan my morning the day of the appointment. Who knew? Maybe I’d sleep through it.

Then, I’d force myself to find one positive thing planned for the week of the appointment. At first, it didn’t exist, so I created it. The carrot. The bacon. The whatever the fuck you want to call it so I could not only survive—but also be rewarded for my survival. So that I could fantasize how life continued after bringing my child to a healthcare setting. I did this every day for nearly three weeks.

This is trauma.

………………….

The night before the appointment was reminiscent of nights we prepared to take June into the hospital for a procedure or another round of chemo. I paced the kitchen, unknowingly placing plates, cups, and bowls in cabinets where they didn’t belong. I did the same in the bedroom after putting the kids to bed, picking up dirty socks, and dropping them in corners on the opposite side of the room. I tried to play it cool so that my husband didn’t start to worry. I looked busy without completing a task.

Grief, fear, and trauma were eating my brain.

………………….

I thought about lying to the doctor when he asked me if our son had any past medical history. I knew he wouldn’t have the medical records yet because I hadn’t requested them. That was a separate trauma in itself. Calling the pediatrician’s office in Maine. The music. It was something I decided I would take care of after overcoming the initial hurdle of visiting a new pediatrician.

The day before his appointment, I texted a close friend and said, “Should I tell the pediatrician about his kidney?”

Yes, his kidney.

Like a good friend, who watched me go through cancer treatment and end-of-life with June, she told me it wouldn’t be the end of the world if I didn’t. For me, explaining our son’s kidney issues felt like a matter of life and death.

It meant I’d have to schedule an appointment with the radiologist to do an ultrasound. Radiologist. Ultrasound. Another healthcare setting. Waiting room. Jelly, wand, sterility, black screen. Ultrasound tech. Provider in the back. Help.

With my friend’s support, I decided I wouldn’t tell the doctor unless he looked me in the eye and asked me about it. I wouldn’t commit a bald-faced lie, but I was prepared to lie by omission.

Life or death.

………………….

The real issue that was looming was the same week we moved to Maryland, the pediatric nephrology office in Maine called me to confirm the two-year ultrasound of his left kidney. It upped the ante on my lie. I felt like I was tying bricks to my feet before jumping off the float. The bottom was there regardless, and I could take the path of least resistance and be honest from the start, or I could drown myself in the process.

During the anatomy scan when I was pregnant with our son, just before June passed away, the sonographer noticed my son’s left kidney was retaining urine. The doctor diagnosed it as mild hydronephrosis due to a narrow ureter that he’d likely outgrow. It was the end of the world.

“This is common in boys and nothing to worry about,” the sonographer assured me as I lay crying on the examination table.

Then, later, after I had collected my belongings and was leaving the office, she ran up to me and said, “Taryn, I did a complete examination of the kidney itself. It’s healthy. Taryn, this is not a tumor.”

We were standing in the hallway, staring at one another, when I burst into tears. She didn’t have to do that, and she knew my ultimate fear. She knew June’s tumor had grown from the adrenal gland, which sat on top of her left kidney. She grabbed me and squeezed me. My son, in my belly, wedged between us.

I’ll never forget that sonographer, her eyes, her face, the glasses she wore. She and I developed a connection rooted in trauma.

The thing about connections rooted in trauma is that, even despite some of them being brief, they run as deep as our arteries. They create a permanent pathway that can never be forgotten. A pathway that leads to comfort during the most painful times in life.

………………….

I almost didn’t tell the pediatrician about our son’s kidney, although when we arrived at the office, oddly, the kidney didn’t weigh on my heart. June did. In all of the angst leading up to the day, I hadn’t considered the doctor asking me about our family medical history. It occurred to me as we walked into the office that I’d have to tell him about June.

The doctor was kind, gentle, and soft-spoken. He was efficient and didn’t unnecessarily poke or prod my son.

“Is there any past family medical history relating to the children I should be aware of?” he asked.

My lips quivered.

“Um,” is all I could say before the eruption of tears.

“Oh, here we go again,” my five-year-old daughter said, perched upon the examination table next to her brother.

The doctor looked at me, looked at her, then back at me with bulging eyes. I started laughing but quickly fell back into tears as I explained we had lost our daughter to neuroblastoma two short years ago.

“Just two years ago, but it feels like no time has passed,” I said.

I could hear my voice trailing off, which meant I knew it was futile to attempt to explain this to someone who hadn’t lived it before.

Still, every time I feel the need to say, it feels like no time has passed. The trauma is no less. The pain is equal to the day she died. Those things have not changed.

I needed the pediatrician to know. I need everyone to know. The pain after losing a child does not go away. Time may as well have stopped for eternity. It only becomes slightly more bearable.

Instead of allowing the pain to control me, I make it shape itself around me. I am able to put it aside until it comes up. I’ve been able to continue living.

“You know I lost my baby,” I said to my daughter as we walked out the office doors into the warm, humid Maryland May air.

“You remember, my baby died,” I said like I was talking to a twenty-year-old. She’s five.

It hurt to say. I hated myself for saying it the second the words left my mouth. She knew. She’d lost her sister. None of it is easy, and her response to my crying was likely reactive and protective. She hates it when I shed tears about June.

“I know, mama! You always cry about Junie,” she said.

Yeah, so?

………………….

After being honest about June with the doctor, it felt a little easier to be honest about other things too, like our son’s kidney ultrasounds, which he’d had in utero, at birth, at six months, and at one year of age.

The hydronephrosis has continued to improve. He has stayed asymptomatic throughout his life. It’s unlikely he will ever need surgery to correct the ureter. Hopefully, it will widen on its own.

There was never anything to fear. A normal brain would know that, but my brain is not normal. It has been molded and contorted in ways it was never meant to survive. There is so much I’ll never live again. And there is so much I can never unsee.

On the drive home, I felt the usual post-trauma exhaustion. After facing triggers, such as doctor’s visits, I can often fall asleep the moment I arrive home. My husband would tell you that I am not a napper. He’s been telling me for eleven years I should go take a nap, but I can’t.

When we arrived home, instantly, I fell asleep with the kids in our bed. I squeezed them both in my arms and slept like I hadn’t slept in years.

This is life after losing your child.

………………….

I never want trauma to inhibit the safety of my living children or for my issues to come between my children and what they need.

Later, when my brain had cleansed itself of the weeks of worry, I tucked the prescription slip the doctor had printed and signed for our son’s follow-up ultrasound inside the calendar where I could forget about it. Then, with hesitation, I pulled it out and set it on top of the calendar. It would be there when I was ready to do some more research and after I had taken a long break. I wasn’t going to forget it for too long. I wouldn't come between preventative care and my son.

I’d completed the hard thing of the week. There will be more. I’m learning sometimes the hard thing is the best thing.

From the beginning, I knew I needed to make the appointment and to reveal past medical history to the new pediatrician, but in this extremely triggering situation, I also needed an escape. This time, it was in the form of a lie. A lie to myself? Definitely. A lie to the pediatrician? Possibly. It was a bit of salvation during the complete and uncontrolled chaos of going to the doctor. I’m not a liar. I love my children. I’d do everything and anything for them.

Two years after June has died, I’m still trying to navigate the tumultuous waters of trauma. Somehow, I’m still afloat. I think it’s the pain that keeps me buoyant. If I push it away, or if I ignore it, I know I will sink. The pain is the reminder that I am alive. The reminder to keep treading.

And by working with it, and not against it, I continue to improve the chances that I will survive.

My Last Nursing Job Was For My Dying Daughter

“I knew I’d never save her from the cancer, but in a day, I was given many opportunities to keep her alive.”

“I think it’s time to call the nurse,” my husband said.

“For what?” I asked.

Why would we need a nurse if June was no longer here? It had been twelve hours since I handed June, our eighteen-month-old daughter who passed away from neuroblastoma, wrapped in her pink blanket, to my husband who carried her into the night. She was taken away in an unmarked black vehicle. She was gone. The struggle, the fight, it was over. Just like that, our lives with June ended.

………………..

Who could possibly need a nurse? They had no business with us. I was done with them. I was also pretty sure I was done with being a nurse. Not only June’s nurse, but a registered nurse (RN). If I couldn’t be June’s nurse, I’d be no one’s.

June was the greatest nursing job I’ll ever have. Daily, I walked the tightrope of being both her mother and nurse. A rope so taut, I‘d never be one without the other.

Often, I was asked to give June the exact care I’d given my patients when flushing her lines, administering injections, or drawing up medications. I’d be hovering in front of June on the verge of a blackout, and the nurse within me would say, “Remember, you can do this,” as she had throughout my years as a novice nurse.

I trained myself in the years of nursing school to not panic, to draw on knowledge, and to remain calm.

Nursing school trained me to care for June similarly to the way a yoga class trains our bodies to breath. It became second nature. Yoga teaches us to breathe through difficult situations, and to not allow our minds to cloud our abilities.

Similarly, the hours of hard work and school trained me to care for June as I’d cared for so many patients. I could rely on muscle memory to complete daily tasks. It was all fine, until the mother creeped into my nurse brain.

“Remember, you can do this,” the nurse in me would nudge when I went to flush June’s central line and wanted to back down, walk away, scream into a pillow.

The nurse brain wrapped in the mother’s heart was nothing I’d ever experienced before. The mother had to step aside for the nurse to do what she did best. But she couldn’t, they were one.

Completing a task was no longer only a task as it had been with my patients. The lens had changed. I was not the nurse caring for a patient, I was the mother caring for her daughter which predominated the nurse in me.

………………..

“The medication, Taryn. They told us to call them to come pick up June’s medication,” my husband said.

“Oh,” I said, still sitting on the couch I hadn’t left since they told me three days before that June was going to die because the cancer relapsed.

When the nurse knocked on the front door, I didn’t get up. Instead, I stayed sitting, thirty-two weeks pregnant with our son, staring out the window.

“Where are the medications?” I overheard her ask my husband.

“Hun, are all of June’s medications in the coffee cabinet?” he yelled to me.

The coffee cabinet was transformed when June became sick. It started with storing bits of medications on the bottom shelf which once held bags of coffee beans and Nighty Night teas. Somehow, all these years later, and devoid of coffee, we still referred to it as the ‘coffee cabinet’.

“Yes,” I replied.

“Do you have a bag of coffee grounds?” I heard the nurse ask my husband.

Ironic. I stopped preparing coffee when June became sick. Instead, I used a Keurig.

Everything in the coffee cabinet was forgotten, and eventually pushed to the side as the list of medications grew. I purchased a bin to safely and neatly store the medications in the cabinet. Soon enough, the medications overflowed into other areas of the shelving. The bin became too small to hold every medication June required to stay comfortable while at home.

The oxycodone was for the pain and discomfort caused by the cancer. The tumor that grew from June’s left adrenal gland, had pushed vital organs aside, including June’s left kidney. It obliterated the adrenal gland. June’s abdominal aorta was forced to circumvent the tumor. On the x-rays, the abdominal aorta, the major artery delivering blood to the lower half of the body, which normally is straight and runs down the center of the abdomen to the pelvis, was in the shape of a ‘C’.

There was oxycodone for the bone pain. After the cells in June’s body were destroyed with each round of chemotherapy, they’d regenerate inside of her bones, within the marrow. An injection given to June prior to leaving the hospital after each round of chemotherapy stimulated cellular regrowth at an unnatural rate. June’s body was working overtime to recreate itself and sustain her life in her tiny bones.

Think of an explosion within your femur, and magnify it, then apply it to almost every bone in your entire body. It lasts at least a week. It takes no breaks. It’s difficult to mask with narcotics. June couldn’t describe the pain with words, but she conveyed it to me with her eyes, by gritting her teeth, and through horrific cries.

There was Zofran for the nausea. A cherished medication. Often, when we stood at the cabinet, I’d line up everything I had for nausea. Like I used to do with my patients medications before I carried them to their room. Taking inventory.

As I referred to my daily notes of administered meds to make sure I wasn’t double dosing, June would point to the Zofran every time. “Eh, eh, eh” she insisted as she nodded her head, “yes.”

“I know Junie, but you’re not due for that one yet,” I’d tell her, and my heart would break, as I fell back on my nursing knowledge after contemplating whether a little extra Zofran would hurt my baby suffering from debilitating nausea.

Long term and misuse of Zofran can cause a prolonged QT interval where the heart takes longer to electrically recharge between beats. I know this because I am an RN. When June was prescribed Zofran, it wasn’t the first thing that came to mind, but after continual administration and the constant need for more, the worry set in.

At the end of the day, I was June’s mom and without any other option, I had to also be her nurse. Knowledge was power, but it became dangerous when it magnified my worry. Much of which I would have been oblivious to without a nursing background.

Worrying about the issue that stood in front of me was enough to kill a horse. As treatment unfolded, the what if’s spurred by my nursing knowledge branched off every situation, creating a briar patch of worry. It was difficult to tell where one worry ended and the other began.

………………..

“There should be a bag of ground coffee in the cabinet where the meds are,” I told the nurse as I rounded the corner into the kitchen.

“What is it for?” I asked. Suddenly, it seemed like such an odd request.

“To waste the liquid medications,” the nurse said.

It hurt too much for me to consider the nurse emptying June’s Zofran into a bag of coffee grounds because next to me tangled in the briar patch of worry, was June. She and I had been in a heaping mess of survival for almost a year. In the hours since her death, I couldn’t tell where she began and where she ended. These medications were a part of June. They were a piece of the middle of the road. Where she and I still existed, together. Where we plotted our escape of what this terrible life had become.

Getting rid of June’s medications felt like June dying all over again, which is why in part, I imagine the nurse offered to come and take them away for us.

………………..

All day, every day, including twilight hours, for ten months, June and I walked up to the coffee cabinet to retrieve the morning, midday, and evening medications. Every six hours we stood at the cabinet. Sometimes, we stood at it every four when June was really in pain. Other times, every two, when the medications were staggered.

I stored bigger syringes to feed June drops of water like a Mama bird when she was dangerously close to dehydration that might require hospitalization. There was extra tape for the NG tube that kept threatening to pull out of June’s nose. There were multiple thermometers. I kept a set of bright yellow Kelly Clamps in case June’s central line tore or broke in half, as a precaution. The clamps could save her life. Momentarily, I, June’s nurse, might save her life.

I knew I’d never save her life from the cancer, but in a day, I was given many opportunities to keep her alive. She danced so closely with death, that the mother in me forced the nurse to stay on duty twenty-four hours a day.

………………..

With every new day, I became June’s nurse when I opened a daily journal, pulled out various medications, and began drawing them up. I made a list of the medication with the time I administered it in a notebook I kept on the counter just beneath the cabinet.

I had flung the cabinet door open so many times that the screw was continuously loose. The cabinet door hung by a thread. My husband reminded me to tighten it, but I didn’t. I couldn’t. It wasn’t that I didn’t care or want to. It was that every time I walked up to the cabinet my mind was racing as to what to administer next. June had just thrown up for the fifth time since she woke up only three hours before, what could I give her? June was wailing in pain, but I’d already given her a dose of oxycodone, what else could help? Open, shut, open, shut. Much like the door to the medication room at the hospital I used to open fifty times a day. In those moments, I was a nurse running for my patients’ relief. It was no different with June.

………………..

It hurts to think about caring for others after June has died. I have a recurring dream that I’m standing in the hospital again. I am wearing a white lab coat. The little girl in the bed in front of me isn’t June, but her bald head shines like June’s did after a bath.

The little girl is smiling at me. There’s another child in the bed next to her, and another, and another. The room is filled with beds. I wonder why I am here and what I could possibly do for these children. I long to help them. The lab coat I’m wearing makes me think I might be able to. I want one of them to be June or at the very least, to tell me they know where she is. I scan the beds with my eyes again, but she’s never there.

I wake up with the desire to be everything I was to June again, including her nurse. There’s a magnetism within my bones to the life we led when June was sick. I’m unsure this will ever go away. I’m sorting how to integrate it into my life, today.

I changed career paths and enrolled in nursing school at age thirty. It was the same year my husband and I were married. The career was calling to me. It was a difficult choice to make, but it wasn’t a coincidence. Everything has its time. It’s all part of the plan.

Once, I chose my role as a nurse. Then I chose to become a mother. I never wanted to nurse my child, but when I gave birth to June the two roles bled together. I have unbelievable gratitude for the knowledge I acquired when I went to nursing school five years before June was born. I am so glad I was given the opportunity to care for June. I’d have it no other way. I’m sure no mother would.

Maybe the plan was to become a nurse to care for June and to resign thereafter. Or maybe the nurse within me didn’t die when June did, as I often feel she has. Perhaps there’s another story there for her in the future. I’ll just have to wait and see what calls to me next. Nothing in this life is wasted.

The Perspective of a Bereaved Mother Nearing Mother’s Day

“It takes a lot of breath to live a single day in a world that often forgets the importance of the mother.”

Motherhood was a role I had barely settled into when our eight-month-old daughter, June, was diagnosed with cancer. Despite already having a two-and-a-half year old at home, when we learned June was sick, I was in the midst of learning how to be a mother.

Being June’s mom became a role I lost myself in entirely. Because of the suffering that is often involved in loving your children, mothers can lose parts of themselves. Some to be recovered and others never to be found. 

………………………..

A good mother sacrifices a piece of herself the moment she brings a child into the world. Every good mother builds their world around the child from the day they are born. Intentional or not, the child becomes the center of the mother’s universe. While, simultaneously, the mother becomes the child’s entire universe. If and when they are so fortunate. 

I can’t understand why we don’t celebrate our mothers more. Not just on a day in May. Instead we put ourselves down and dance around the critique of others. Like who is mothering their children correctly. What the best practice is. We criticize ourselves. We fault our mothers, then sacrifice our being to be nothing like them. 

………………………..

This time of year, every year, I am reminded of the mothers whom I’ve lost. The one’s I’d give anything to have a sliver of again. 

“If she could see us now,” I’d say to June as I flushed her central line with saline while she lay on the changing table atop my grandmother’s dresser. The one I inherited when my grandmother died several years before June was born. 

“I wonder what she would think of you, Junie,” I said smiling, as I bent over and opened the drawer with June’s pajamas, laying a pair over her scarred body to examine whether or not she had gone down a size. My baby, who had only just turned one, was shrinking. 

June’s top and bottom half were split, denoted by a thick scar just above her umbilicus that ran the width of her abdomen. It looked as if she had been sliced in two. 

Some days, I’d talk to my grandmother aloud as I flushed June’s lines, or at night as I rocked her to sleep, in hopes she’d hear my pleas. Maybe in some miraculous way she could help June recover from the cancer. 

“Oh, Taryn,” I imagined she’d say if she were still alive, teary-eyed, in her most forlorn voice, after I told her June was dying. 

………………………..

I remember sitting on the edge of my grandmother’s bed as a little girl watching her pull out the same dresser drawer I later kept June’s pajamas in. I watched her lift a sweater from the drawer and hold it up to herself in the mirror. From where I sat, I could see paper lining the bottoms of the drawers painted with roses. 

“Oh, Junie, if Nana could see us now, what would she think?” I’d say to June as I pulled another drawer open and instead of dainty roses there were was a mess of syringes filled with heparin and saline, alcohol pads, and antibacterial green caps. Medical supplies now devoured the drawers once lined with paintings of delicate pink flowers.

I’d often wonder what my grandmother would have done for me when she found out June was sick. What kind of mothering she would have offered. Perhaps, she would have offered me the mothering every mom who’s child has cancer so desperately needs. 

………………………..

Mother’s Day has always been about other mothers in my life. When I consider the mothers deserving celebration, I don’t think of myself. I think of the mothers who have lived many more years than I, such as my elders. 

At times, I don’t know how to recognize and celebrate the mother in me. Part of that is because of the wound that comes with identifying as mother after losing June. The other part is that I am still figuring it out. 

………………………..

This Mother’s Day marks the third since June’s passing a little over two years ago. Just eight weeks after she died, I experienced my first Mother’s Day as a bereaved mother, exactly forty-weeks pregnant with my son.

In the photos from that first Mother’s Day, I am reclined on a couch, my face and eyes are swollen and tired. I’m symptomatic of the final days of the third trimester. I ache all over. My heart aches the most. My eyes are puffy because I’ve been crying since June died eight weeks before.

Have you ever woken up from a deep sleep and the pillowcase is wet from the tears you cried while you slept?

Most nights after June died, my body just wouldn’t quit. When I was lucky, my mind would shut down as soon as I lay my head on the pillow, but my body would continue to expel the suffering through my tears.

The nights I couldn’t turn my brain off and lay awake, were the nights I swore I could hear June calling for me. I’d hear a tiny whispering voice saying, “Mama, mama, mama,” over and over again. 

The mourning mother in me cried on and off most nights in the wake of June’s death, while I slept, nine months pregnant, on the verge of giving up. 

………………………..

My son, whom I unexpectedly became pregnant with during June’s treatment, was due May 8th, 2022, which that year, unbeknownst to me, was Mother’s Day. 

“Isn’t that Mother’s Day this year?” A nurse asked me after I told her my due date as she hung a bag of Cisplatin on a metal pole and connected it to June. 

“Is it?” I hadn’t considered. I didn’t care. Or did I?

This small detail the nurse pointed out forced me to acknowledge my greatest fear. If my son was due on Mother’s Day it was because he was part of a metaphysical exchange. A parting gift. His birth would seal June’s fate. What more cherished a gift to receive on Mother’s Day than a brand new baby boy as your daughter is dying of cancer? 

At that time, no one knew the cancer had returned in June. I had every reason to believe she was going to survive. We all did. She had been declared cancer free several months before, prior to entering the most enduring portion of treatment: high-dose chemotherapy paired with stem cell transplant. 

June had survived the worst part of treatment which many children did not. She died a survivor. 

………………………..

My son wasn’t born on his due date, Mother’s Day, 2022. To my great relief, he was four days late. 

I was relieved to not have to endure my first Mother’s Day as a bereaved mother birthing a child I’d only just meet for the first time. One I’d feel guilted into loving immediately. A child of mine who would never know his sister. Seemed impossible. I’d been so distracted by caring for June, that I’d almost forgotten he had grown in my womb. 

The last baby I held was June, and I knew he wouldn’t be June. Although part of me wished he was June and that we could have a do-over. That I’d wake up from the nightmare where my two babies were so close to meeting, but never did.

“Junie, your brother could never replace you,” I’d whisper to her at night as I rocked her to sleep. After she died, I’d repeat the same words when I’d be laying awake at night wondering where June really went. “He will never replace you,” I’d say just after I could have sworn I’d heard her whispering, “Mama, mama, mama.”

………………………..

Sunday, May 12th marks the day my son turns two. It’s the first birthday of his that has fallen on Mother’s Day. It’s a monumental birthday for two reasons. 

Firstly, our son is healthy and thriving. He’s turning two! He’s an absolute gift, just as I once feared. I could never have asked for someone more delightful to be placed directly in my life’s path. My son has saved my life in many ways. 

Secondly, our son turning two marks the first age June never reached. The first birthday she didn’t celebrate. This is a big milestone in our household because for the first time in nearly four years, I’ll know what’s like for my child to continue to live. I have been caring for an infant, newborn, and toddler who is just about to turn two, but then doesn’t.

My son’s age is also an indicator of the time that has passed since June died. In that sense, I know he and June’s lives are forever intertwined.

I am overcome with emotion that my son is turning two. It’s an incredible feeling. I’m also anxious to see if it takes the edge off the worry I have surrounding my living children. I wonder if my breath will come back. 

His life is a tremendous gift I have to celebrate this Mother’s Day. I no longer fear the arrival of the day itself, or fear feeling happiness, like I did that first Mother’s Day without June. 

………………………..

I framed a piece of the rose paper that lined my grandmother’s dresser. I’ve been searching for it in the moving boxes. It reminds me of my younger years, when I was free from worry’s chains. 

It reminds me of that day my Nana pulled a sweater from her drawer, held it up to herself, and then turned to me to say, “Dear, do you see this scar? The doctors cut me open. They operated on my heart, dear.”

It looked as if a jagged knife had been dragged from just below her neckline to the bottom of her sternum. Scarring from the stitching made it look more like shoe laces could be woven through it, than anything else. She thought she was going to die, then lived nearly two more decades.

I don’t have a scar like either June or my grandmother to show that I’ve been severed in places no mother should ever have to be cut. But from them, I learned that if someone is sewn back together, even without the sum of their parts, they might still be whole. I’d like to think this is exactly how both June and my grandmother felt before leaving this world. 

In the process of healing, I’m becoming okay with losing parts of myself because perspective has won, once again. My life could never have been this beautiful had I never met June. I am whole.