“No one ever told me that grief felt so like fear.” (C.S. Lewis, from A Grief Observed)

The last time I published a blog, I wrote about our move to Spain. Well, we had to leave two weeks later. I’ll spare you the tedious details of Schengen regulations and visa requirements. The bottom line is that we had to fly back to Croatia for a few months to get everything sorted out.

After a lot of back and forth with immigration lawyers, we ultimately decided that it was best to leave the EU for three months to reset our tourist days. This will give us ample time to submit our visa application when we return to Spain in mid September.

In the midst of all of these moves and big decisions, I had planned a trip to the US that involved an insane amount of travel on my own. My husband was unable to join me. After traveling within the US for three weeks, I then flew to Montenegro, where I’ve never been, to meet up with my husband. We are living here until mid September when we make one more attempt to apply for a visa in Spain.

If all of this sounds stressful, it’s because it is.

But not because of all the shuffling between countries. We’re used to moving. We move more than we stay put. What’s truly made me feel out of sorts is that I had to travel without my husband. It’s hard to admit, but when we travel, my brain shuts off, so I was afraid that I’d get lost and somehow end up in the wrong country on the way back.

Aside from the dread of traveling, I also felt anxious about something awful happening to my husband while I was away.

It’s not a new thing. Since Josh’s death, this death anxiety, always wondering who will be next to die, has been something I’ve had to work through.

As I began writing this blog post a few weeks ago, I came to realize how deeply anxiety has been woven into the fabric of my existence, shaping the majority of my life experiences since early childhood.

When I reach back into those early formative years, I think about my mom who also lost a child 8 years before I was born. His name was Jackson, and he died when he was just 3 years old after ingesting something that turned out to be poisonous.

Although I never met my brother, his life and death left a profound legacy that I knew intimately through my mom through the memories and stories she shared with us. But I also absorbed, almost through osmosis, the persistent unease and fear of living that lingers after a catastrophic loss.

It makes sense then that my world never felt safe and that I was an anxious child. For a long time, I couldn’t explain what frightened me. I just had a sense of foreboding that someone my age shouldn’t feel.

During my childhood, my mom constantly tried to shield me from the dangers of the world by warning me about all the ways I could get hurt, whether I was heading out to go skating with my friends or going to my high school prom.

All she had to say was, “I had a dream…”, and that was enough for me to reconsider my plans. To be fair, her dreams were ominous - and very vivid and scary.

Some of them possessed an eerie accuracy. The first one I remember was when her cries woke me in the middle of the night. She said her brother appeared in a dream to tell her of his death. It was true. He had passed away a month earlier, but her relatives in South America, where we used to live, had hidden the news to avoid causing her more grief.

Most dreams turned out to be nothing but manifestations of her anxieties. Even so, when mom started talking about her dreams, we all braced ourselves for the worst.

That fear seeped deeply into my subconscious because two nights after Josh was born, I had a terrifying nightmare.

In the dream, Josh was missing. I wandered the dark corridors of the hospital following the sounds of his cries before finding a pile of dirt. To my horror, I realized the sound was coming from under that heap.

I fell to my knees and began digging frantically until I saw the top of his head and quickly pulled him out. I held my baby tightly, weeping until my crying woke me.

In the darkness of my hospital room, I felt cold sweat dripping down my spine, my teeth chattering uncontrollably. I sat up and looked for Josh who was sleeping soundly. The nurse told me I had a fever from an infection.

The relief I felt was fleeting. A few days later, the anxiety came back and burrowed in my chest for years.

I never talked to anyone about it. I was terrified that talking about my dream might somehow cause it to manifest.

When Josh did die at the age of 20, the self-blame was unbearable. I felt tortured by guilt for failing at the one job I had, which was keeping my child safe.

No one could convince me that I didn’t cause his death simply by dreaming about it and drawing it into my consciousness.

For years, I’ve had to challenge the narrative that I was responsible. I’ve accepted that I don’t have that kind of power. My mind is simply searching for someone to blame because Josh wasn’t supposed to die before me. This out of order death has left me, much like my mom, feeling helpless and powerless, and it’s easier to blame myself than accept that I have no control.

Maybe that’s why this season of uncertainty has felt so difficult. On the surface, it’s about visas, separation anxiety, and not knowing where we’ll be living a few months from now.

But underneath it is the same struggle I’ve been wrestling with for years: accepting that life doesn’t come with guarantees.

I can’t control what happens next. I can’t protect the people I love from every possible harm. And, most importantly, I can’t eliminate loss by worrying about it.

What I can do is keep living and traveling, even when that familiar anxiety crops up.

As I sit here in Montenegro, waiting to find out whether Spain will finally work out, I’m reminded that uncertainty isn’t just part of my nomadic lifestyle. It’s part of being human. The visa may be approved or denied. Plans may change again.

And, the people I love may not always be here. I have no control over any of it.

When I acknowledge that the underlying issue isn’t anxiety, but my need to control situations and outcomes, fear begins to unravel and eventually fades, because no amount of worry can make the future safer. It can only make the present smaller.

Our two cats peer out the window as if studying the scenery unfolding before them. They’re as mesmerized as we are.

As we round the bend, we see it. Our mouths fall open. We gasp as the snow-capped peaks of the Sierra Nevada rise suddenly into view.

Their sheer scale stops us. For a moment, we forget how tired we are.

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For a year and a half, my husband and I have lived in Eastern Europe, waiting for this moment when we could finally call Spain home.

And now we’re here.

We’ve researched cities, navigated visa requirements, gathered documents from past residences, and hired experts to guide us through it all. We’ve done everything we were supposed to do to build a new life somewhere else.

As I take in the scenery, I feel a quiet sense of arrival, but also something else. This isn’t the first time I’ve tried to start over. It’s just the farthest I’ve gone.

There’s something about starting over that I now find deeply appealing. I’ve done it multiple times in the nomadic life I’ve led since my son, Josh, died three years ago.

When I’m asked why my husband and I left the U.S., I explain that the life I had with Josh was obliterated with his death. There was no going back. Not only did that life no longer exist, but the version of me who lived it didn’t either.

When Josh died, I felt as though I were standing in a pile of rubble, staring at the wreckage with neither the desire nor the will to begin sifting through it, let alone rebuild.

Even if I’d had the energy, stepping back into that life, without my son in it, felt inconceivable.

Going somewhere entirely new, far from the peer group of moms I was no longer part of, far from the people I tried to avoid, far from the hushed conversations I’d walk into knowing they were about Josh’s death, felt like the only viable option.

Leaving my family, friends, and everything familiar was also a way of taking back some control. It was an act of defiance, an unspoken “F you” to a universe that had forced the most devastating change in my life and left me childless. I refused to remain at the mercy of something that had taken my only child from me.

Once I was in a new country, in unfamiliar surroundings, I realized how good it felt not to be known. I was not the woman whose son had died by suicide. I didn’t receive looks of pity everywhere I went. I was anonymous. And I relished that.

I heard an interview with Jodie Foster a few weeks ago, and something she said about living as an expat stayed with me:

When you’re an expat, you get to reinvent yourself. You can be whoever you want to be.

I didn’t know who I was without Josh. Was I still his mom? Could I still call myself his mom?

I didn’t know who I wanted to be, either.

I wanted to be alone. I wanted to write. That was all I wanted at the time.

Since then, my husband and I have uprooted our lives three times, moving from one continent to another in search of a place to call home.

We didn’t find it in Eastern Europe. Not knowing the language made us feel like outsiders, mere spectators in a society we didn’t fully understand.

We placed our hopes on Spain. Because of my Ecuadorian heritage, we believed it might be easier to blend into the cultural fabric, especially in Granada, where Muslims and Christians, Spaniards, French, and a mix of Brits and Americans live side by side.

This is where we feel most at home. And what surprises me is this: we are finally ready to stop moving.

We want to put down roots. We want to be part of a community. We want to belong again.

Do I know who I am three years later? No. Not really. I’m a bereaved mother. I’m a writer. I’m a grief educator. I have new labels.

But deep down, I’m still just Josh’s mom.

Being here in Spain has helped me understand something I couldn’t before: no matter how far I go, or how many times I try to start over…

I’m still Josh’s mom.

And no amount of distance will ever change that.

Let me explain.

The show is the only one I’ve watched in its entirety multiple times. When my son, Josh, was entering his tween years, we watched the first four seasons together.

I was working full time and finishing my masters in teaching. Life was busy and hectic. The only time I turned on the TV was in the evenings when we’d watch The Big Bang reruns.

On the nights that Josh was with me, we had a ritual.

I’d turn on the show while I made dinner. Josh would work on his homework and then head outside to practice doing tricks on his skateboard.

The rhythmic clang of the board on the pavement soothed me.

I was happy to have him with me. His dad and I were divorced and we’d agreed that Josh would alternate homes during the week. I relished every night we had together.

When we watched The Big Bang together, Josh’s laughter would fill the living room. There was comfort in the predictability of those weekdays together, and so much happiness.

I didn’t know how much those ordinary nights would come to mean to me.

Years later, when Josh began showing puzzling symptoms of what we would come to learn was Schizoaffective Disorder, our lives began to unravel.

The lightheartedness and predictability that had characterized the earlier years, vanished.

Josh became detached and unemotional. He had difficulty communicating his thoughts. When he tried, he’d take me into a labyrinth of thoughts that were impossible to follow.

My quick witted son faded as this unfamiliar person emerged.

Every day was a struggle.

I grieved for the version of Josh I had known before the illness, for the nights when we’d talk into the night about the books we’d read, for our closeness.

Stress and grief led to chronic insomnia, so I developed a habit of watching shows on my phone. The only show I’d watch was The Big Bang Theory. It was familiar and it reminded me of the life I once had.

After Josh died, I fell asleep watching The Big Bang for a year and a half.

I needed to drown out the traumatic memories.

A few weeks ago, I saw that the last season of the show was on Prime for free, so I watched it.

If you’ve ever fallen madly in love with a TV show, then you know that the characters feel like people you know.

In the second to last episode of the series there’s a montage of the twelve seasons where you see Leonard and Penny meeting for the first time. It shows all of the characters’ story arc as they matured, married, and settled into their adult lives.

Midway through the montage, I felt an overwhelming sense of sorrow.

Tears burst through my eyes as though a dam had broken. The guttural cry that followed came from deep in my body. It made my whole body shake.

At the same time, I was watching a montage of my life with Josh, our dinners, the nights I’d listen to his skateboard banging against the sidewalk outside, the evenings reading Chicken Soup for the Tween, and the conversations that followed.

I was overwhelmed with the finality of it all, not of the show, but what it represented, that precious time in my life with Josh before everything changed. Like the show, I could always go back and rewatch videos and look at photographs, but there are no future ones.

I’ve been thinking since my breakdown watching that episode, that grief has a lot to do with the theory of how the universe began. The more I think about it, the more I see correlations.

There’s a theory that before the Big Bang, something had already existed. The universe didn’t start from nothing. There were particles that were compressed into something dense, waiting to expand.

Grief feels like that kind of powerful expansion.

It breaks open suddenly, without warning, and stretches into every part of your life. It reshapes your days, your memories, and your future.

But it doesn’t start with the breaking.

It starts with love.

The love that once had a person to receive it, that lived in laughter on the couch, in the sound of a skateboard against the pavement, in late-night conversations and quiet routines.

And when that person is gone, the love doesn’t leave with them.

It stays. It continues to expand.

It fills the space they once occupied.

I’ve been living in inside that space. March 20th marks three years. It’s an ever-growing universe made of everything Josh and I shared, and everything that will never be again.

And it began with love.

I don’t understand what anyone is saying. I catch a few familiar words here and there, but otherwise it sounds like gibberish.

Most days I can tune out the cacophony around me and get lost in my thoughts.

I look out the window as the bus winds through familiar streets lined by cypress and orange trees that complement the pink and yellow pastel-colored homes. We drive through the old town, where ancient ruins now house gelato stands, clothing stores and restaurants.

In the center of the city is Diocletian’s Palace, a fortress built around 305 AD, now folded into everyday life. Usually teeming with tourists in the summer, it’s mostly empty on this blustery, cloudy day in February. Only a few locals mill around the palace or sit at one of a dozen cafes.

Over the speaker I hear, “Sljedeca stanica je” Those words are clear as day. They’re the only words I understand, “The next stop is…” My stop.

Adapting to a new country

When we moved to Split 13 months ago, my husband and I enrolled in Croatian classes. We learned the Croatian alphabet, which has four letters that don’t exist in English. There are consonant blends in phrases that are exceptionally difficult to pronounce like, “Gdje je WC? (where’s the bathroom) and in words like “brzo” (fast).

I began using what little words I knew whenever I was out. “Dobar dan!”, I’d say when I entered a store ( good day).

At coffee shops, waiters asked a series of questions in rapid succession, and I’d panic. That’s when every other language I know would come flying out of my mouth: “Si! I mean, oui! Un cafe. Gracias!” It was like throwing cooked spaghetti at a wall, hoping something would stick. But all I got was puzzled stares.

The sounds and words of Spanish, English, French and Croatian would swirl around in my head before spilling over onto an unsuspecting person. It was sometimes stressful, but more often it was amusing.

We’ve lived here for over a year and now speak enough Croatian to exchange pleasantries and have more successful transactions in stores and restaurants.

When I struggle to understand what someone is saying, I now smile politely and nod. This gives me time to piece together some of the recognizable words and use context clues to figure out what they’re saying, and most of the time I get it right.

Moving from Costa Rica to Croatia

My husband and I left the United States five months after our 20 year old son, Josh died. He succumbed to schizoaffective disorder, a mental illness that made him feel hopeless about ever having a happy and purposeful life. He died by suicide three years after the onset of his symptoms.

I instinctively knew that I wouldn’t survive such a catastrophic loss if I didn’t give myself ample time to grieve and process the trauma of Josh’s death.

The move to Costa Rica gave us time to decompress. It was restorative. My nervous system slowly began to regulate without the busyness of work and social obligations. We spent an entire year living the pura vida, as they say in that part of the world: the simple life.

After some time, as I began to feel strong enough to do more, we decided to move to Croatia to experience something entirely different.

Life in Croatia

Over the last year, we’ve immersed ourselves in a new culture and have learned a language well enough to function and get around in an unfamiliar environment.

I read recently that when you travel, “your brain is forced out of autopilot. There are new streets, languages, food, and faces so the nervous system can’t rely on old scripts.” Neural pathways are created, and your brain develops a plasticity that enables you to adjust to a your new surroundings.

It was like that in early grief. I was navigating an unknown landscape after my world split into two distinct parts: the before and the after Josh’s death. In this new world, my life was no longer recognizable. Without any type of road map, I felt aimless.

I’ve come to realize that living in Croatia resembles the way I’ve learned to survive grief. Over time, I have adjusted to the unfamiliar surroundings and learned a new language - the language of grief. It blends old and new words, like, bereaved mom. My mind still switches between those words and Josh’s mom, filling in the gaps with what I know - Josh is my son. Without those familiar words, it just doesn’t make sense to me.

I also understand contradictory statements that were once foreign and impossible to comprehend, like feeling joy and pain. I know that one does not exist without the other. To someone who’s not experienced the death of a child, this concept may not make sense, but I’ve come to accept that I no longer feel pure joy. There is always an undercurrent of sadness and longing for the life I had when Josh was alive. Every new place I visit, every sunset I watch, I think of Josh. I feel happy for the opportunity to travel and I feel heartbroken that he’s not here to share it with.

This new language is nuanced and layered. It takes time to learn. Like Croatian, I will never master it. I’ve come to accept that. I know just enough to get me through my days.

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Then there’s Christa Ovenell. She’s vibrant, self-assured, spirited, and bold. With red stained lips, multi-colored glasses, the sides of her head shaved and a heap of curls haphazardly dangling over the side of her face, she gives off more feminist icon Rosie The Riveter vibes than a mortician or funeral director.

I came across her Instagram page when one of her posts caught my attention. In it she says, “I’m a queer adjacent, queer positive death educator… who’s an independent funeral director and doesn’t work for one of those large corporations.” She was referencing companies that pay lip service to the queer community during Pride Month and not much more. As Christa asserted, her “pride flag is here all year round.”

With a sizable following of 40K, it’s pretty clear her message is resonating with people.

My interest was piqued. Not only because she is not beholden to a corporation, but because she’s a maverick in an industry predominantly run by men.

When we met over Zoom, I felt an immediate connection. Her openness and warmth put me at ease.

I asked why she chose to become a funeral director and if she had grief experiences that impacted her decision.

Christa: One thing that makes me a little unique in this business is that I actually didn't come from a grief path.

Unlike some people in her industry whose grief experiences led them to the funeral business, Christa’s path was a bit different.

Christa: For many, many years I really wanted to be in a helping profession. I was in education. I was a non-teaching administrator at a large Canadian institution, an international education program, and I had been there for close to a decade. And, to be honest, I really wasn't happy.

For about 20 years Christa considered going into the funeral business after her sister told her about a writing assignment she did for a big funeral corporation. Christa’s sister interviewed a mortician who told her about a specific job he did in which he reconstructed a young boy’s body after a tragic plane accident.

Christa: This mortician was able to like lay [the boy] out for the father, and the dad sat with his boy for like 6 hours; just sat and stroked his shoulder and cried, and eventually was able to close the casket on his son. I remember hearing that as a much younger woman, and thinking, you see that is work that makes a difference. That is work that is truly a helping profession right there.

She went through the embalming and director training with the intention of learning all the “nitty gritty details” of what happens when someone dies from a very practical, biological and emotional perspective.

Once she began her career, she began receiving an overwhelming number of phone calls from people seeking guidance after the death of a loved one, asking what to do next.

Christa: There is no other life event that we approach that way. None. For every other major life event there is some sort of preparation. We know what to do. And if we don't, we have resources readily available. Experiencing a loss is hard enough, then you compound that part of the tragedy by having to make decisions in a fog of grief. Right? And you walk into the funeral home, which has people who have any idea of what to do, and not all of them are as cool as me.

Her next statement threw me for a loop.

Christa: A lot of [funeral directors] are out there trying to ensure that you remain disempowered so that you don't know what practical things are going to happen, and so that you don't know the impact of your decisions.

Funeral directors disempower us? I needed clarification on this point.

Christa: 150 years ago we stopped dying at home in the West, and that's the point where things changed. We started institutionalizing death. We took [death] out of the home. We put it into hospitals. But we removed that last stage of life from our lives by putting it in a place where we have visiting hours, run by professionals to take care of that aspect. This is also the time that morticians, started emerging.

And by morticians, Christa is referring to men. Although, it was women who prepared the body doing the non-invasive tasks, men were needed for more practical reasons.

Christa: I mean, death is hard and heavy work. A dead body is heavy. It’s hard to dig a hole. It was filling a need. And when we stopped dying at home, and started engaging with funeral directors and morticians - those people were men.

So much was lost in the institutionalization of death. It not only distanced families from their dying loved ones, it left them in the dark about the important steps to take after a death. Worse, it altered how decisions were made.

Christa: Over a very short period of time, a couple of decades, really, we stopped, knowing what happens when you die. We stopped understanding the practical things, and then you couple that with the decline in religious beliefs and rise of Secularism, it distanced people from not only from faith, but also traditions.

Those in charge of making the arrangements now have a stake in what decisions are made.

Christa: Morticians are well served by making sure that they are the only ones who can answer questions.

They also became savvy salesmen.

Christa: As a matter of fact, funeral homes, are highly regulated. Laws are made reactively. They are very rarely made proactively. There's a law in British Columbia where I live that says you have to show a minimum of 6 caskets.

Coffin prices vary but it behooves the funeral home to show the most expensive ones along with all the extras - jewelry, for example - that can be purchased elsewhere for a fraction of the price.

Christa explained that while it may seem that she’s very “anti funeral director”, she’s not. She actually wants families to feel empowered in their decisions through education.

She’s not alone in this respect. More women than ever are entering the funeral industry, and this is humanizing the industry.

Christa: In 2014, here in Canada, more women began going to funeral colleges than men. So that means that more women are entering the field. Very soon we're going to switch from having a very male environment to a female environment. I do think that, despite the fact that most funeral homes are corporately owned in North America, this sort of younger generation with tattoos and connection to their feelings, and a lot of therapy behind them, are going to resist falling into line with some of the corporate measures around upselling.

I asked Christa how she handles making sales without taking advantage of vulnerable clients.

Christa: I'm a little bit ahead of the curve. I don't work for a corporation. The funeral home where I hang my license is privately owned. It’s an independently owned, women-led organization that doesn't have a board of shareholders to report to, and it also happens to be the leader in green burial.

By “green burial” she is referring to the 5 principles of Green Burial as outlined by the Green Burial Society of Canada. Green burials are a more natural, sustainable alternative to conventional after-death practices such as using concrete-lined plots in highly manicured cemeteries.

Christa: I'm trying to make a space for death through education. I take a very, very practical approach, and I'm filling a hole in the death caring space.

The hole Christa is referring to exists in the lack of education and preparation that is offered to communities long before a death occurs. As a former educator, this is a vital part of her role. She wants people to know exactly what needs to be done after a death and fully understand their options before they’re faced with them.

Christa: I have a program called Prep School, which is this very holistic advance care planning. We look at the legal paperwork that I want people to have in place, so that through their lives it can be taken care of; and if anything happens to them, and they can't speak for themselves, everything will be set up.

Then there are the disposition decisions, which is the manner in which the bodies are handled after death.

Christa: You have to decide burial or cremation. If you choose. Burial. Okay, where? What kind of marker are you going to have? Will you stay to watch the casket being lowered into the ground? Will you put anything in the casket with them? Will you have a graveside service? Will you have a formal service? Will you be fed up with the funeral home and want to do it in your own backyard? Like all of those things. I break it down into body care after a death has occurred, visitations and viewings, services and ceremonies.

I create helpful resources for people. So some of those resources are just shorts on Instagram. Some of them are through my mailing list. I host free webinars.

The goal is for people to be proactive and make these decisions 5-10 years before they have to, which can be altered as needed. She also assists families with the creation of legacy projects so that their person could be remembered long after their death.

The work Christa does is not just practical, it is essential for families who benefit from her knowledge and expertise. Upselling and staid traditions are being replaced with compassion and proper guidance thanks to women like Christa and others who are leading the charge towards reviving what’s been lost in the institutionalization of death: compassion, community, and thorough preparation.

If you've made it this far down the page, thank you. Your support means the world to me.

For grief resources, please visit our website: The Grief Hub.

When a woman finds out she’s pregnant, she dutifully purchases a copy of the book What to Expect When You’re Expecting. This reference tool educates and guides expectant moms through each gestational stage of pregnancy. No detail is spared.

At the end of life, by contrast, there is no handbook that is as ubiquitous and thorough in its preparation for death. Western society’s fears and death denial leaves people woefully prepared for the end of their lives.

Few people know that there is a person they can hire to provide the same type of specialized and personalized guidance moms get from a doula or midwife when they give birth.

This person is known as a Death Doula, and I had the pleasure of interviewing one.

I sat down with Mikey The Doula, as she’s known on social media, who was a social worker until she realized that her clients needed more support and care than she was able to provide.

Mikey: I know most people have heard of birthing doulas and birthing midwives. They don't necessarily replace your obgyn. A lot of people still want to have a baby in the hospital, but also want a doula. So birthing Doulas and midwives help us labor into the world and death doulas help us labor out.

Mikey's path toward becoming a doula was not a direct one. She worked as a social worker for years before she began to notice a “big gap” in hospice care that she was unable to fill. During her sessions, she realized the level of care they required.

Mikey: When somebody is dying, whether due to old age or disease, or a combination of both, they require a lot of care, a lot of hands-on care. They go back to being an infant. They need to be bathed and changed. They require a lot of help.

Mikey saw the limitations when her terminally ill clients began expressing their needs.

Mikey: Most people actually want to die in their home surrounded by family. They don't want to die in a facility or in a hospital. And I was thinking to myself as a social worker, how am I going to do that? How exactly am I going to do that for our baby boomers and our silent generation?

While Mikey was considering her next move, something life changing occurred that made her pivot towards death care.

Mikey: I was in a really bad car accident. I was a mobile therapist and was going from one client’s home to see another, when somebody ran a red light and hit me head on. I don't remember the car accident at all. I was completely unconscious, but I had a near-death experience. I like to say it saw a light in my body. I was above myself in the hospital. I saw the ventilator. I saw the doctors. I saw everybody working on me. I did not want to come back into my physical body. I felt warm and safe. It felt like heaven, whatever heaven is, an energy. It was just light. I thought, I don't want to go back, but I heard very clearly a voice that said, ‘you're not done yet. You have more to do.’

And then I woke up. I was in the hospital for months and months and had to learn to walk again and talk again. I couldn't even figure out how to turn on the stove. It was a long haul to recovery. I had to use a walker. I had catheters. I had home health nurses, and I knew I couldn’t go back to social work.

Throughout her convalescence, she began plotting her next move. She decided to take reiki classes after she had a few sessions to treat her injuries. Later, she earned a master's level reiki certification. Mikey also began to experience something extraordinary - an ability she describes as “channeling”. She found that her non-verbal clients could communicate with her.

Mikey: The channeling, as I call it, became stronger and much more powerful after my near death experience. My reiki clients began asking me for channeling sessions and tarot card readings.

There was no doubt to Mikey that since her brush with death, she’d begun having clear visions and messages during her reiki sessions.

Yet, the reiki on its own didn’t provide the level of care her clients required. She continued to feel a “strong pull”, as she described, to the “death and dying space”. One day as she was listening to a podcast about death doulas, her next move became clear.

Mikey: I thought, I need to find out everything about how to become a death doula, or a death midwife. That is what I felt very called to do.

It became evident that she could parlay her skills set into a successful career within the death and dying field. So, after completing her death doula training and receiving her certification, she launched her business, Healing Hearts House LLC.

In her new role, she was able to provide a higher level of care that hospice could not. She explained the common misconception about hospice which is that nurses and aides will be available 24/7 for their patients. Mikey asserted that it’s simply not the case.

Mikey: Doulas are on the non-medical side of hospice so we work in conjunction with the medical professionals, who are limited by insurance and enormous caseloads. Hospice patients may see their nurse twice a week for 15-20 minutes aside from the initial consultation, which is typically an hour. But they're not there all the time. They’re understaffed. So this full time care really falls on the family, and they can't necessarily quit their jobs to care for mom or dad.

The gap in care is why families hire Mikey. She not only alleviates some of the responsibilities that fall on families, her services extend to end-of-life planning - preparations of advance directives and wills. She assists with funeral arrangements, by helping her clients decide between traditional burials, cremation, or a green burial in which the body is buried without embalming in a biodegradable container that allows for natural decomposition.

But the most pragmatic aspect of Mikey’s job is the decluttering of her client’s homes, in what is known as Dostadning, a Swedish term that means “death cleaning”. This process provides clients with a sense of control and agency as they sort through their belongings and decide what to do with them.

While many of these services reduce the family’s responsibilities, legacy projects provide the emotional satisfaction of bonding with their loved ones as they sort through photos and share stories while creating memory books.

Mikey also fulfills last wishes.

Mikey: I really try to make sure that the individual gets to live their best life while they're dying. I'm not beholden to insurance companies. I take my clients on a 1 last time trip, or to the beach one last time. Some have asked to go to a bar or a Casino. I will make that happen, even if they’re wheelchair bound, because I'm a social worker by trade and I know how to make these things happen. I try to make the ambiance wonderful for them as well, whatever music they like, the lighting, making sure that family comes and says goodbye; and if they're spiritual or religious, making sure that their priest, pastor, or chaplain presides over their death. I help prepare the families by providing a timeline with explanations of what they can expect at each stage of the dying process.

Some of her clients ask for a specific meal that they’d otherwise couldn’t have because of their medical condition like a slice of cheesecake. Others ask for a bit of whiskey or a cigarette. Whatever they desire, Mikey makes sure to give them what they request.

As her clients approach death and begin to feel discomfort and pain, they may ask Mikey for reiki sessions.

It was in one of these sessions that Mikey was able to act as a conduit for one of her patients to connect more deeply with his family.

Mikey: This particular client’s cousin called me and asked if I would come to do Reiki. And when I got there, the family explained his personality, signaling his keen interest in spiritualism, which they did not share. This individual was not in any pain. He was very open, and as I started to do the reiki, I could hear stuff coming through: Tell my mom this, tell my dad this, and so I just turned to his family and told them what he was communicating to me. I told his parents that I was channeling their son, and I'm hearing him talk, and he wants to share some of his thoughts with you. I asked them if they were open to it. And if they would have said no, you know, I would have just kept doing the energy work. But they were open; they wanted to hear what he had to say.

Mikey explained that this family’s relationship with their son was complicated and there had been a major communication barrier due to his mental health issues.

Mikey: He really had trouble articulating how he’d felt throughout his life, something they hadn’t previously discussed. He and his parents didn't really understand each other. They did the best that they could but never understood his eccentric lifestyle, his sexuality, and all these different things that were going on with him. And because he was in the active dying phase and could not relay his final thoughts, he needed me to speak for him.

What Mikey described are final thoughts and memories that the dying want to relay before they transition to death.

Mikey: So I’m basically just a hollow vessel. My consciousness, my ego is removed, and I am just the conduit. I channel their light, their energy, essence, aura, chi, energy - all these words are synonymous.

She has the remarkable ability to remove herself and allow her clients to communicate through her to their families. It’s a beautiful process of connection, atonement for past mistakes, and a healing of any emotional wounds.

Mikey: Miracles happen at the end of life. You see people talking to loved ones that have already died. You see people reaching out and saying, Mikey, can you see the angels? Can you see them? And they're seeing something that is so real and that I can feel as well.

Eventually, her patients lose their senses one by one. No longer able to hear, speak, or swallow, they slip into a serene comatose state.

Mikey: It may look like they're uncomfortable, but they're not in any pain. Dying doesn't hurt. It's some of the diseases that people are dying from that can cause pain.

As I was listening to Mikey describe the natural end of life experience - the peace her patients feel and the degree of closure their families are afforded - I couldn’t help but feel wistful about my son’s death. It was traumatic and unexpected. There were no last words or wishes, no legacy projects or end-end-of-life planning. Just an abrupt end to his young life. It was as bad as bad could get.

It got me wondering if there is such a thing as a “good death”, so I posed this question to Mikey.

Mikey: My definition of a good death is one where you are in charge of your death. I feel like the best deaths I have witnessed are the ones where the individual is not afraid about talking about death and dying. They are able to write an Advance Directive, a Will, anything they want their families to do or not do. So I think the best deaths are ones where a person is empowered, where they have agency, and are able to articulate their needs.

The ability to witness and participate in the end of a life, though certainly painful, seems to be a privilege that a “good death” affords, not only for Mikey’s clients and their families, but for Mikey herself.

Mikey: I know it may sound like a depressing line of work, but let me tell you, it's a miracle. Every day I feel so fulfilled. Every single day I come home to my partner and express that I’m doing exactly what I’m meant to do.

As we wrapped up our conversation, it was evident that Mikey’s fulfillment comes from having a profound understanding of herself and the value of her work. Her near death experience has given her a unique perspective on dying. She knows there’s nothing to fear. Her companionship, meticulous planning, care, and genuine respect for the journey her clients emark, helps them face and ultimately accept their mortality. They die peacefully. And just like birth doulas hold mom’s hands as they bring forth new life, Mikey grabs a hold of her clients and quietly leads them out of theirs. It’s a unique circle of life experience that is as much awe-inspiring as it is virtuous.

If you’ve enjoyed reading this interview, which is a part of the Let’s Talk About Death Series, and would like to read others, please consider becoming a paid subscriber. Your support helps a lot and is greatly appreciated. Stay tuned for next week’s interview of a funeral director. It may sound dismal, but it is truly educational and interesting. You won’t want to miss it.

Until next time! Stay open to new ideas. And, hug your loved ones - because life is short.

For grief support and resources, please visit my website The Grief Hub.

Welcome to Let’s Talk About Death, a series in which I interview people who work in the field of death, dying, and bereavement and those who have experienced loss. I’m a Certified Grief Educator and the creator of The Grief Hub website, which provides resources to people who’ve experienced loss.

Why do I want to talk about death?

In March of 2023, I lost my son Josh, who was only 20 years old. His passing not only changed my life forever, it made me notice how uncomfortable people are with the topic of death and grief.

The Series’ Mission

The goal of this series is to help make death and grief feel more normal, less taboo. I also want to explore why our society finds these subjects difficult to face. By looking closely at the reasons behind this discomfort, whether they come from fear, cultural norms, or a lack of open conversation, I hope to open up more honest and compassionate discussions.

Today’s post is a recording of a webinar hosted by The Grief Hub. The presenter is Elreacy Dock, Doctor of Behavioral Health, Thanatologist, Certified Grief Educator and Death Educator, whose articles have appeared in Harper’s Bazaar Arabia, Newsweek, and Vogue. Dr. Dock attempts to demystify death by explaining why the subject makes people so uneasy and how we can begin to change the conversation around something that everyone in life will one day face.

Webinar Highlights

• It explores the social and cultural attitudes and beliefs that have led to misconceptions and fears about death.

• Provides actionable strategies for demystifying death.

• Suggests responses to comments that undermine and invalidate the grief experience.

To access The Grief Hub resources that can support your grief journey, please visit The Grief Hub here.

You can find Dr. Elreacy Dock on Instagram here.

Death is an inevitable part of life - it happens to 100% of people. So why the reluctance to talk about it openly? Why do people feel uncomfortable around those who’ve experienced a significant loss? And why are grievers expected to get back to work and life after a brief mourning period as though nothing has changed? The reality is that death does change people who’ve been touched by it - because when a significant person such as a child, a parent, spouse, or sibling dies, life gets rearranged.

About the series

Each week, I invite people who’ve experienced loss and experts in the field of death and dying - Authors, Bereavement Specialists, Death Doulas, Funeral Directors, and Thanatologists (people who study death and dying) - to share their grief stories and views about these taboo subjects.

Do I need to pay for a subscription?

Nope. It’s free for everyone.

How long is the series?

It will last as long as I have people to interview! I don’t expect there to be a shortage of individuals who’ve been touched by death in some way.

When will it start?

The series will launch in mid June.

Is this content available anywhere else?

No. This series is exclusive to Substack; however, if you’d like to attend a webinar or workshop, visit my website or Instagram page for information about upcoming events.

About the host

I’m Nalda Seidman. I taught English as a Second Language for over 15 years and left my career to become a Certified Grief Educator after losing my son, Josh, when he was 20 years old in March of 2023. My husband and I are Digital Nomads, working remotely in Costa Rica, Spain, and now Croatia. In this time, I’ve started a blog on Subtack and have written articles for Open to Hope and Get Griefy Magazine about my experience with child loss. Last year I created a website, The Grief Hub, that provides a wide variety of resources for anyone who’s experienced loss. You can find videos on grief yoga, mediation, art journaling, and writing to help you along your grief journey. There is also a directory of Grief Specialists who can help you process your loss. Through my website, I host virtual workshops on art journaling, mediation and webinars with experts from the grief community.

If you have any questions, or would like to be interviewed for this series, please contact me through DM or Instagram.

Thank you for supporting me in educating the general public about death and grief and removing barriers that keep people from truly understanding the profound impact loss has on the bereaved.

1. I started this blog and have shared my writing on some pretty heavy topics - and I’ve received amazing and encouraging feedback.

2. I completed a Grief Educator training with David Kessler and am Certified to educate people inside and outside of the grief community about grief, loss and trauma, how to support loved ones who’ve experienced loss, and how to live fully while also grieving fully.

3. I have decompressed. My stress levels have decreased exponentially by getting out of the hustle and bustle of life in the U.S.

4. I’m interested in doing things again. Before coming here nothing mattered. I had zero interest in exploring new places. It took some time, but I did make it out and traveled around the country with my husband and friends, and visited some of the most breathtakingly beautiful beaches, volcanos, and waterfalls I’ve ever seen.

5. I’ve made new friends. While it’s hard to say goodbye to all the people my husband and I have met in the time we’ve been here, it’s nice to know that we have new friends who can visit us in our next destination.

6. My blood pressure is normal again! I had dangerously high blood pressure from the stress of my loss, unhealthy eating habits, and lack of exercise. That’s all changed, thanks to getting out, exercising and simplifying my life.

7. My body is strong. I found a Barre gym, Coco Barre in Coco (which I highly recommend if you’re in the area). It’s a wonderful way to get or stay fit. I had no idea how fun and rewarding exercise could be until I met our amazing and effervescent instructor, Jessica, who guided us (or tortured us, however you want to look at it) through some of the most intense workouts of my life. It strengthened my core, my legs, and my mind because you have to really concentrate to do some of the moves she had us do on the floor and at the ballet Barre. Ouch.

8. I have been offered my very first writing gig as a writer/contributor for Open to Hope, a nonprofit with the mission of helping people find hope after loss. My articles will be instructional as opposed to what I write on Substack which is more just sharing my experience. I will contribute 4 articles per year, and I’m so very honored. And speaking of writing, i’ve met some amazing women who are authors and share their hope with the world, see their links below! They are a huge part of my grief support group.

9. My blog has been featured in Get Griefy Magazine, an online publication geared at supporting people in the grief community.

10. And last, but definitely not least, I've found a new purpose and meaning in my life after losing my beautiful son, Josh. I never in my wildest imagination thought I would ever be here - in Costa Rica, writing, traveling, meeting new people, and feeling joy again. It’s bittersweet, actually. I have felt unbearable pain and sorrow but now also feel happiness and a feeling of accomplishment for not giving up, for doing what I needed to do for my well-being and mental health and not what others thought I should do.

Not everyone who has experienced devastating loss has to leave the country to find happiness, because it’s not found in external things. Happiness resides in our hearts. We just need to get rid of all the muck and trauma to feel it.

With that, I say to all my Costa Rican friends and expats, Pura Vida and gracias, amigos, que dios los bendiga x.o.

Link to Open to Hope https://www.opentohope.com/

Link to Get Griefy Magazine https://www.getgriefymagazine.com/home

Link to Erin Blechman’s book https://www.amazon.com/MY-UNEXPECTED-JOURNEY-Reflections-Suicide/dp/B09YPKPBQL

Link to Vanetta Cox-Mlynczyk’s book https://www.amazon.com/s?k=the+worst+life+has+to+offer+book&crid=272U3WBLVGL1N&sprefix=the+worst+life%2Caps%2C203&ref=nb_sb_ss_fb_2_14_pltr-data-refreshed

Grief is often described as a change you don’t want—something that upends your life against your will. It could be anything: the loss of a job, a home, or a loved one. Any unwanted change can bring grief, leaving us feeling powerless and wishing desperately to restore some sense of normalcy, to reclaim the life we had before everything changed.

This powerlessness is exactly what I felt after losing my son, Josh. My life, as I knew it, was irreversibly shattered. I couldn’t fix it. I couldn’t go back. Worse yet, I didn’t recognize myself anymore. Who was I without him? Was I still a mom if my son was no longer alive? My identity felt broken. All of my friends had children. How was I supposed to navigate their stories of graduations, engagements, or weddings, knowing my son would never experience these milestones? I retreated from social media. Watching others live their happy, uninterrupted lives was too painful.

All hope and joy seemed to vanish. I couldn’t imagine ever feeling content again. It felt as though I’d been thrust into a bleak, colorless world—one devoid of vibrancy and life. I longed for a way back, like Dorothy in The Wizard of Oz, tapping her heels and yearning for home. Except my home, my technicolor world, was gone. Dorothy returned to her family, but my family would never be the same. Still, I wanted what she wanted—I wanted to go home. Yet, I knew that home no longer existed.

After Josh’s passing, I found myself paralyzed by shame and despair. Some people lean on their routines or find solace in work after a loss, but I wanted to disappear. I felt like a failure for not being able to save my son, for not keeping his mental illness and addiction at bay. For six months, I barely left the house unless it was for therapy, an appointment, or a grief group. Friends dropped by occasionally, bringing food or comfort, but my social circle shrank to just a few people.

When my husband suggested moving to Costa Rica for two years on a Digital Nomad visa, I didn’t hesitate. The thought of leaving behind the sadness, the pitying glances, and the endless questions felt like a chance to reclaim myself. I wanted to rediscover my identity, my sense of adventure, and the beauty of the world. We wouldn’t move for six months, so I gave myself that time to focus fully on my grief, hoping that when we finally arrived, I’d be ready to step outside, explore, and find small moments of joy again. I didn’t expect the pain to end, but I hoped I’d find the strength to begin living again.

In those first months, I started taking baby steps. I ventured outside for short walks in my neighborhood. Eventually, I joined a gym, even though the thought of running into someone I knew filled me with dread. I wasn’t the outgoing, adventurous person I used to be—the one who loved hiking, kayaking, and exploring new places. That version of me felt lost. Each outing, no matter how small, drained me. Afterward, I’d return home, collapse onto my bed, and often cry. Sometimes, I simply lay there, trying to replenish the energy it had taken to leave my safe space. I began to understand how someone could become housebound, too afraid or too exhausted to face the world outside.

A month before the move, my husband and I visited New York. To my surprise, being with family brought comfort. I felt a flicker of joy in revisiting the places where Josh and I had spent time when he was a baby. I wanted to show my husband the New York City landmarks we’d explored together. But everywhere we went, I cried. Seeing the grand entrance to the Met, strolling through Little Italy—each place reminded me of Josh, and guilt followed the brief moments of enjoyment. How could I have any fun in a place Josh would have loved but never got to see?

Still, I began to understand: I needed distance. I needed to go away for a long time.

A month later, we sold nearly everything we owned and moved 3,000 miles away to Costa Rica to start anew. I felt hopeful, even optimistic. I convinced myself it was impossible to feel sad in Costa Rica, with its stunning beaches and lush landscapes. But on our first night in our new home, reality hit me. I felt heavy with regret. How foolish I’d been to think I could leave my grief behind. It followed me, as raw and painful as ever. I missed my friends, my family, and most of all, I missed Josh.

The next morning, I walked along the beach. The sand was soft beneath my feet, the water a breathtaking blue-green. When my husband finished work, we walked the beach together, marveling at the beauty around us. For the first time in almost a year, I found myself wanting more—more walks, more hikes, more connection with the natural world. Slowly, the desire to explore returned. A hike up to an abandoned hotel in the mountains marked a turning point. For the first time, I didn’t just step outside—I sought an adventure.

Costa Rica enveloped me in beauty. The lush mountains, the vibrant flowers, the golden sunsets—it all felt like something from a storybook. Birds chirped cheerful tunes, and the world around me seemed to glow. A small seed of hope began to take root. I wasn’t “better,” but I was starting to heal. I immersed myself in new experiences, found solace in nature, and began connecting with others who shared my grief. I started blogging, volunteering, and sharing my story with other grieving mothers. It was hard work, but it was transformative.

The holidays were still excruciating. That first year, I avoided them altogether, yet they still hit me like a tidal wave. I regressed, isolating myself and battling the physical symptoms of early grief. But by January, I felt like I’d emerged from a storm cellar after a tornado, relieved to see the sun again and ready to continue rebuilding my “new normal.”

As I approach the second anniversary of losing Josh, I’ve come to accept that grief doesn’t go away. It doesn’t get smaller—but I’ve grown around it. I’m stronger now. I’ve learned to navigate the waves of sadness and prepare for the hard days, allowing myself the space to retreat when I need to and rejoin the world when I’m ready. I’ve rebuilt my life piece by piece.

Today, I’m a writer, a grief educator, and a teacher. I’ve found meaning in sharing my story and connecting with others who’ve experienced profound loss. My husband and I are planning our next adventure, moving to Spain and Croatia for the second year of our Digital Nomad journey. I’m looking forward to hiking, exploring, and meeting new people. My life without Josh has found meaning—not in his death but in the life I have created since his loss. I try not to ask the unanswerable “what if” questions. Instead, I focus on taking care of myself—mentally, physically, and emotionally—and channeling my grief into creativity and connection to other grievers.

I still miss Josh every day. I’d give anything for just one more moment with him. But I’ve learned to embrace the beauty of this new life, to welcome the changes I’ve created, and to carry him with me in my heart. This new world I’ve built is different—irrevocably so—but it’s vibrant and meaningful in its own way. And in that, I find peace.

Focusing on the good memories through writing has helped me remember Josh with more love than sadness, but the heaviness of my loss is not something I can easily stave off for too long. Sometimes, just like the quote above describes, there’s no avoiding the darker side of my grief.

I have found that engaging in projects that honor Josh’s life has helped me get through the birthdays, holidays, and anniversaries. In that way, I’m not pretending I’m OK and I’m not distracting myself to avoid sadness. I’m actually leaning into it knowing the emotions will wax and wane.

The most important aspect of planning is flexibility. If I miss a day of writing, I simply pick up the next day. There are no hard and fast rules.

There is also flexibility built into the day of a special occasion. For Josh’s birthday on Monday I’ve planned to be with friends in the the late afternoon but have left some chunks of time open so that I can connect with Josh. I usually write a letter and talk to him. The morning will be left open to doing whatever I feel like doing. If I feel up for Barre class, I will go. I will get a pedicure because I know that it will soothe me. There is also a support group I can attend on Zoom where I can connect with other moms. I will alternate between sitting with my grief and distracting myself from it. That seems to work for me. It’s a familiar dance that is partly choreographed and partly free form.

I have had to figure out how to manage my grief because I haven’t reached a point where I no longer experience the weight of my loss. Before Josh died, I used to believe in the linear nature of Grief - that the bereaved move through these clearly defined stages of anger, denial, bargaining, depression, eventually reaching a level of acceptance where they simply get on with life without their loved ones.

I haven’t moved on. I have simply made room for it in my life. It’s like having an unwanted visitor in my home, someone whose presence has inconvenienced and disrupted the routines of my life, who despite every objection continues to occupy space in my environment. On the days where it shows up without any indication that it will leave, I sit with it, eyeing it warily as I drink my first cup of coffee.

When I think about grief in this way, I’m reminded of Billy Holiday’s hauntingly beautiful song, Good Morning Heartache, about loss and despair that she can’t shake so instead offers it a seat at her table. It becomes her constant companion.

Good morning heartache
Here we go again
Good morning heartache
You're the one
Who knows me well
Might as well get use to you
Hanging around
Good morning heartache
Sit down

If you want to hear it, here’s a link to a You Tube video.

Good Morning Heartache

And now, I will dip into the memory attached to this photograph.

In this picture, Josh and I are celebrating my birthday at a restaurant with my closest friends. We’re outside and although it’s mid December (the 19th, to be exact), we are cozy and warm as we sit by an outdoor fireplace. Josh is in his early tween years where he’s becoming more and more independent, but still needs me and enjoys spending time with me. I’m surrounded by all the people I love and my heart feels full. Josh sits next to me the entire night and talks with our friends with ease. When I ask my friend to take a photo, he reaches around my shoulder and smiles.

That’s all for today. It think it’s time for me to shut my computer and brew another cup of coffee.

Well, I did have heartburn. It was awful. And, yep, Josh was born with a full head of dark hair. When we were in the hospital after my C-Section, I got him ready for his picture by gently brushing his hair to the side so he looked like a middle aged man with a comb over. I loved staring at his beautiful olive skin and running my hand through his soft hair.

His hair was a thing of beauty.

Growing up he had several hairstyles. For a long time he had the obligatory bowl cut. That’s when it would shine the brightest - when it was long. Sometimes it would get cut short and I’d miss the longer locks, so I’d let it grow out again. Long, short, long short (er….shaved off when his dad couldn’t take it anymore, to my great dismay), long, short. That was the pattern. Josh didn’t really seem to mind how it looked. It was all the same to him.

It wasn’t until Josh was in middle school, when every 10-15 year old boy sported the Justin Beiber look, that he began caring about his hair. He never had the exact style where it was combed to the front and dangled over his eyes, but it was long and stylish.

Once Josh got to high school it was either long and shaggy or long in front, shorter in the back. He was proud of his hair, and with good reason. It was gorgeous. He began accumulating hair products of all types, from pomades, to moose, to gels, he had it all.

Every morning before work I’d shower and do my hair, and every time I’d look for my hairdryer under the sink, it was missing. I’d walk down to Josh’s bathroom where I would find him blowing out and styling his hair. “Can you hurry?”, I’d ask. “I need to dry my hair, too”.

This went on for a while, before I decided to buy him a dryer of his own to use. It was close to his birthday. I thought it would be the perfect gift. So I bought a dryer and wrapped it up. I don’t know what he thought I was giving him, but he was excited to open his gift.

I snapped this picture just when he noticed what it was. His smile was priceless.

His high school graduation picture is my all time favorite. How he managed to get his normally pin straight hair coiffed into such an elaborate hairstyle that the strongest gust of wind wouldn’t budge, I don’t know.

I truly enjoy sharing these pictures and silly stories because they remind me of Josh’s sense of humor - the way we joked with each other about everything, the gag gifts and inside jokes no one else understood. I could still hear his laugh, and I hope I never forget how it sounds.

These photographs and the memories are all I have left now. You’ll see them posted on social media every year, time and time again for the rest of my life.

To be fair, I wasn’t a fan of organized sports either as a kid. I felt a lot of pressure to perform. Maybe Josh felt that as well, but I think Josh wanted to learn on his own. No matter what it was, he wanted to be given the tools and then figure it out himself through endless practice.

When he got his first skateboard, he spent hours learning tricks, either alone or with his best friend, William. And every free chance they had they spent at the skate park.

Josh also loved climbing. He climbed on every piece of furniture at home when he was a baby; outside he’d be halfway up a tree the second I turned my head.

One day when Josh was 5 years old his dad and I took him to the White Water Center in Charlotte. They offer activities like white water rafting, kayaking, and mountain biking. They also have a climbing wall.

Josh asked us if he could climb the wall so we asked the attendant, who said yes. With giddy excitement, Josh put on the safety helmet and harness and began to climb, slowly and steadily, without any hesitation. Seeing him climb the nearly 50 foot wall made me a bit nervous, but Josh never looked back - until he made it to the top. He then turned back and sang, “Spiderman, spiderman, does whatever a spider can!” as he dangled from the harness, then he pushed off the wall and returned safely to the ground.

From that time we went to climbing gyms and skate parks. Josh loved the thrill of scaling walls of different heights and complexity. Each one presented a unique challenge that motivated and held his attention, which was no small feat for a kid with ADHD. I had to help him find activities that suited his personality and held his interest.

Sometimes as I review Josh’s life, which I do almost daily, I wonder if maybe I should have pushed him to do more traditional sports or pushed him in some other direction later on in life. It’s difficult to not question and second guess every decision I ever made, but when I think about how happy he was and how he thrived when he did things he truly loved when he was given choices, it puts my mind at ease a bit.

I loved everything about my child - his quirkiness, his need for excitement and challenges, his creativity, and most of all the independent spirit that I could never squelch.

1. His Binky

2. His Woody and/or Buzz Lightyear dolls

3. A book

   

Nothing was more gratifying to Josh than that Binky. Judge me if you must, but when he had colic, the only thing that soothed him was a pacifier. It was gonna be temporary, I promised myself, but a few weeks turned to a year, then three.

Before he learned to walk, he crawled - fast. We often compared him to Maggie Simpson, not only because of his dependence on that giant Binky and the amusing suction sound it made, but because, like Maggie, he was extremely cognizant of his surroundings and knew a lot more than adults realized.

For instance, one day when grandma and pop-pop visited, Josh brought over the Toy Story CD case. But his grandparents, having forgotten the multi-step process necessary to get the movie playing, called me for assistance (it wasn’t as easy as today’s streaming services, which are displayed the second you turn on your television). Josh had just started walking - he was 15 months old - when he toddled over, grabbed the remote and proceeded to turn on the TV, press the CD setting, turn on the CD player from which came the slidy thing where he placed the CD, pressed play and - presto! The movie began playing. We were all stunned.

And while I’m on the Toy Story subject, if you knew Josh back then you knew that he was obsessed with the movie and characters. He watched it countless times, had the toys, and several books. And he loved watching the special features where the director explained how the writers story boarded the script and created the 3D characters. Once he started talking at age two I realized how much he had been thinking about things before he could speak. Why did the toys come to life? Why couldn’t they let the adults find out? Why was Sid so bad? Would Sid ever be a good kid? He was really bothered by Sid, as most children were, because he didn’t have any redeeming qualities. Josh needed to understand what motivated people’s behavior.

Many of the questions he had were from the books we read. From the time he was a baby we read at bedtime: Dr. Zeus’ Cat in the Hat and all of his other classics; Marget Wise Brown’s The Run Away Bunny, Goodnight Moon, Home for Bunny; all the Fairy Tales (Peter Pan was his favorite); Harry the Dirty Dog (over and over and over again); Rainbow Fish, Guess How Much I Love You - it went on and on. He’d plead, just one more. pleeeese. The point is that Josh needed to hear these stories. They fired his imagination and sated his curiosity about the world.

I thought for sure he’d become a writer, but instead he became a videographer. He bought a used camera and began shooting videos when he was 16. He’d sit and edit footage for hours. There wasn’t much else that held his attention. He was a visual storyteller. It made perfect sense to me, because, like him, I have an innate need to tell stories.

I never imagined that I would be telling you all these stories about my wide-eyed boy, who is no longer with us, with me. All I have now are stories to tell, and I believe Josh is urging me to tell them, just as he did when he was a child.

As he grew up, Josh never lost his lighthearted nature. He had a way of finding humor in the most mundane situations. So when he found the original photograph of himself, he threw himself back on the couch and posed exactly as he had all those years ago. Even though he had lost all of that irresistible baby fat that I loved to kiss and blow raspberries on, he had maintained the same demeanor.

“Grandma, look!”, he said excitedly. She let out a laugh, and I snapped a picture on my phone.

“Let’s do another one!”, he suggested, so we looked through more photographs and came to this one. Here he is at the end of his preschool years. It was a graduation picture for the parents that his teacher took of her students down by Lake Norman in Cornelius, North Carolina.

I followed Josh as he ran outside to find a tree to pose in front of. Once he found one he liked, he slipped his hands in his pockets and smiled as I snapped another picture.

When I was looking through my phone trying to decide which photo to write about, I sighed when I came to these two. Here is Josh happily recreating snapshots from his youth and I thought, wouldn’t it be so wonderful if we could just get a redo in life sometimes? What I wouldn’t give to go back in time and correct any mistakes that I made, make different choices, steer him away from people and situations that had negative influences in his life. Would the outcome be the same?

I won’t ever have an answer to that question, just as much as I can’t get a redo. And that’s it. There’s no looking at the bright side of things or finding a silver lining (though some people insist on thrusting those thoughts on me). The death of a child is senseless and heart wrenching, and I will never find any meaning to it.

The meaning I make of it is not about his death, it’s about what I do with my life in order to survive it. I write. I offer support to other grieving mothers, I have found a community. And I have photographs that remind me of happier days.

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Here he is dressed as one of his favorite characters, Harry Potter. The glasses, by the way, are not a prop. They were his glasses, and because of his saucer-sized blue eyes and brown hair, people usually made references to the boy wizard, and Josh loved it.

I loved the comparison too, because Josh, like Harry, was a boy hero. He showed his fortitude and courage not by surviving a crazed wizard’s attack on his life, but by being nearly unfazed by the endless prodding and probing of needles and instruments that measured his eye pressure, and countless hospitalizations and procedures that required anesthesia as a baby and for many years after that. If anything, I was much more haggard and emotionally drained than he ever was.

The nurses and everyone that knew of his Congenital Glaucoma diagnosis felt the need to remind me that children are resilient. That certainly was true of Josh, for while he’d initially come out of the anesthesia groggy, disoriented, and in tears, his bubbly nature would re-emerge as the medication wore off and he became more alert.

That Josh had any eyesight left was nothing short of a miracle. When he was 11 weeks old and I was on maternity leave, he woke up one day unusually cranky and despondent. I found it strange because the colic that once made his little body curl in pain had been resolved. He was a happy baby, all smiles since. No matter what I did to soothe him he continued to cry. He was well fed, had no fever or any other signs of illness. I was baffled.

I called his pediatrician and was advised to come in, much to my relief. I was afraid they’d tell me not to worry, that babies cry. That’s just what they do. Instead, they took my concerns seriously. I had a gut feeling that something was awry.

My pediatrician, after briefly examining Josh’s eyes, referred me to the ophthalmologist down the road and told me to go see him that same day. I asked the doctor if I should be concerned and what he thought might be wrong. He answered honestly that he did not know but that he noticed one of Josh’s cornea’s looked cloudy, as if it had a cataract, and had to be checked out right away. The ophthalmologist waited until Josh and I were the only patients left in the waiting room. That wasn’t a good sign.

After examining Josh’s eyes, the doctor explained that Josh had Congenital Glaucoma and required an operation to bring down the eye pressure that had caused the cloudiness in his cornea. When I asked about the prognosis, the doctor explained that every case was different and there was no telling what the outcome would be. He added that Josh would need to be closely monitored, his pressure checked every two weeks under anesthesia at New York Eye and Ear hospital in Manhattan, a short drive from where we lived at the time.

Every eye pressure check, always scheduled for 7:00AM, required an out-patient admittance to the hospital. So Josh’s dad and I would wake up at 4:00AM, get ourselves and Josh ready, and head down to the hospital where we’d go through all of the check in procedures.

Sometimes microsurgery would be required to make tiny openings in Josh’s eyes that would naturally drain the pressure. That’s as technical as I could get now, but back then I could talk about it all almost as well as any doctor. I was well versed in the anatomy of the human eye, knew all the terms and treatment options, all the names of the medications.

In total, Josh had 12 surgeries between the time he was 11 weeks old until he finally stabilized at age 7. That’s a lot of anesthesia. A lot of hospital visits. A lot of specialists who treated his condition. It was a lot.

But through it all, Josh never stopped smiling. He was always ready to crawl or run around the hospital ward after the medication wore off and ate a bit. I’d take him to the playroom for a while so he’d get all his energy out. In the hallways, he’d point to the animals painted on the hospital walls and say “dat”, while he’d eagerly wait for me to name them. On the drive home, he’d fall asleep again, properly tired out.

Miraculously, Josh never lost his eyesight. He only required glasses to correct his vision, which was poor in one eye, but perfectly healthy in the other. The hospital visits eventually slowed down and life felt normal again.

Josh didn’t need to ward off evil wizards and Dementors with incantations and spells, though he loved to pretend he did with his cousin, Alex. They’d run around the house shouting, “'Expecto Patronum!” at each other as they waved their wands. He was my hero, the bravest and most courageous little boy I knew, with or without a cape and a wand, because he endured the unimaginable, and to the doctor’s amazement - who likely assumed Josh would lose his eyesight - he thrived.

So when people called Josh Harry Potter, I’d smile and think, “yes, he really is magical”.

Distant relatives, cousins, uncles, and friends are spread throughout the house - some eat in the living room, some in the kitchen, while others sit at the dining room table. Everyone is talking at the same time. My head whips from person to person, trying to keep up with the multiple conversations happening simultaneously. I hear laughter coming from the kitchen. Kids gleefully run up and down the hallway or head upstairs to play video games in one of the bedrooms. Josh is squirming in my lap, eager to leap off and begin running around with the rest of the children. He’s two years old and has just attended his first funeral. I was unsure how close he should get to the casket, but my family encouraged me to bring him close to my Uncle. Josh softly patted my uncle’s head before kissing him as he lay in the casket. It all seemed so natural.

Back at the house, you wouldn’t know someone dear to the family has just died, because there’s so much lively chatter and laughter. One moment I hear Spanish, the next English, while the younger generation speaks in a combination of both languages, a form of Spanglish only their parents understand.

As the day turns to night, food is still plentiful, as are the desserts and coffee. We’re sharing stories of my uncle, as we reach for another powdery, silky smooth Italian Wedding cookie. It melts in our mouths like butter. It’s clear no one is leaving for a while.

To my delight, my aunt comes out of the kitchen holding a tray of Ecuadorian Empanadas, her specialty. Our eyes nearly bulge out of our heads as we grab a few of the freshly fried pastries filled with cheese and scallions, sugar falling off the sides as we place them on our plates.

Josh and his cousins continue playing, their laughter fills the room. I love watching him interact with other children. He loves to be silly and makes them all giggle.

My heart is full even though we’ve gathered for such a sad occasion. Everyone I love is in that house, except my uncle, of course. We have all come together to celebrate his life while we reminisce and share our fondest memories.

When Josh dies at the age of 20 a lot of the same cousins are with me once again honoring his life, a short one in comparison to my uncle’s. There is a lot of crying at the memorial service. There is no casket. Only pictures of Josh all over the room. Every time I start to take it all in, I begin to feel dizzy. I feel like I am going to get sick. I cry until there are no more tears.

I can’t stand the thought of being alone. Nights are long and painful, so I invite my family back to my house for dinner.

My refrigerator is stocked with food that friends have dropped off, so my husband and I don’t have to cook. We warm up trays of lasagna, bring out huge bowls of leafy greens as a side. We begin brewing coffee, even though it’s almost dark out. I don’t sleep much, anyhow.

I jokingly say, “I wish we had some empanadas!” , not realizing that my cousins have already bought all of the ingredients (I had dropped hints earlier in the day).

Before long, we sit together reminiscing about Josh’s life, laughing at all the funny things he did when he was young and as an adult. He always had a quick wit, ready with a clever observation or a joke. We laugh about the time Josh turned his glasses upside down before entering a room just to see who would notice and laugh. He was three years old.

The smell of coffee and empanadas waft through the house, and so does our laughter. For just that one night, for those few hours, I forget my pain long enough to take it all in, to enjoy my family and see Josh again through their eyes.

It’s an uncomfortably muggy summer day in the city. I’m in a tank top and shorts feeling grateful for a bit of respite from the heat. 

I snap a selfie standing in front of a painting that is part of a series aptly named, The Weeping Woman. It's the first of several paintings from Picasso’s cubist period that depicts a woman contorting in pain and anguish after losing her child in the Spanish Civil War.

I shift uneasily as I stare at her eyes ghoulishly bulging from their sockets, staring up at something draped over her forehead, blood pouring all over her hair. She’s baring all of her teeth. They’re jutting from her gums like tiny gravestones. She is as frightening as she is grotesque. 

The people behind me talk so loudly, their voices echo in the cavernous room. Impatient children cry out in boredom and frustration. I turn to glare at them, feeling irritated by the noise. 

My attention returns to The Weeping Woman. 

I remember seeing it for the first time in an art book when I was in college. It’s hard to explain my fascination with that particular series. There was something about the woman that intrigued me but also frightened me. Maybe it was the brash display of emotions, so flagrant and unapologetic, that made me want to distance myself. It was a level of pain I did not grasp.  

Now I’m staring at the same painting, 34 years later, marveling over the sense of kinship I feel with the woman in the painting. My child has died recently. Loss is no longer something abstract and remote that happens to other people in war torn countries.

It is very real and personal.

It is, life imitating art.

It’s supposed to be the other way around, or at least that’s how I’ve heard it, but not in this instance. I don’t want to turn away or view it with the morbid curiosity I once felt.

I look at the Weeping Woman now with deep understanding and empathy that only another bereaved mom can feel.

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Every morning during the week I wake up to my screeching alarm. My head feels like it’s stuffed with cotton balls. I never want to get out of bed, so I hit snooze, over and over, until I can no longer put off getting up for Barre class. I’m so groggy, I can’t focus, but I don’t drink coffee. I can’t. If I drink coffee before class, all the water I drink will run right through me, and I don’t want to interrupt the flow of the class by going to the bathroom even once. I drink a glass of water, eat a handful of nuts, and head out.

My walk to the studio is the second best part of this routine, besides the class itself. I love the feel of gentle breezes that caress my face in the morning’s cool air. The sun overhead, not yet blazing, feels good on my face. I watch the butterflies gently flutter around me while I admire the bright pink, red, and yellow Bougainvillea flowers gracefully draped over the sides of buildings.

I see the studio in the near distance and I glance at the my phone. It’s about the fifth time I’ve checked it since leaving my apartment. It’s a compulsion now, checking to make sure I arrive early and never on time - that would make me officially late. Class begins promptly at 8am, and there’s a lot involved in getting ready before we start. I need 10 minutes to get it all done. 

Finally, I arrive at the studio and step out of my sandals, leaving them outside. The cold air of the air conditioner feels good on my skin. I step on the squishy mat placed at the studio entrance. My bare feet sink down into it as the air escapes from the weight of my body. The feeling is contrasted by the cold and hard ceramic floor I step on next. I sit and gently clean my feet, inhaling the sweet baby powder scent of the wipes and then pull the snug fitting Barre socks over my feet. The grips under the socks stick to the tile as I walk the short distance to the exercise mat in the center of the room. Still groggy, I watch as everyone makes small talk. I listen but rarely participate. I simply don’t have the brain cells at the moment to speak. The music begins. I inhale and begin to move my body as I follow our instructor. Though initially my body feels stiff and rigid, it begins to loosen up after the first set of exercises, Beads of sweat appear on my forehead. My entire body feels warm. I continue to move up and down as I plie and point my toes, hold squats, and push my muscles just a tiny bit more as I lift weights above my head.  Fifty minutes later the class ends. The cool down stretching routine always feels like the sweetest reward for a job well done.

I spend the rest of my time in the studio peeling off my socks, sticky with sweat, freeing my feet from their confinement (if they could thank me, they would). We all chat for a few minutes before heading out to our respective homes. My smile is wide and genuine. I’m chatty. I often feel so drunk on endorphins, I’m tempted to give everyone sloppy kisses and tell them how much I love them - like I did when I was wasted on vodka or way too much beer. But I refrain. I don’t want to seem weird.

I return to my apartment, ready to begin my day. I’m focused, energized, and happy.

At the end of my day I congratulate myself for getting out of bed, for getting myself to Barre every morning, in spite of the endless hours I spend, while others slumber away, staring up at the wall instead of sleeping. Josh Is always on my mind, but at night, thoughts of him fill the room. I can almost hear his laugh. But then the silence begins to feel unbearable. Some nights I wonder if I will ever see a glimpse of him somewhere in the shadows, smiling his big, beautiful smile. Wishful thinking. At some point, well into the middle of the night, I fall asleep and slip into the sweetest dreams where Josh’s life continues and we’re reunited, if only for a short while, before the screeching sound of my alarm wakes me up again.

When we got to the party it was crowded with people in costume socializing and laughing. I looked around the room and felt irritated by all of the cheer and excitement. Overcome with sadness, my eyes welled up with tears. I excused myself and headed to the bathroom to compose myself.

A year ago, while Josh was enjoying his life in Los Angeles and having his own Halloween fun, I was one of those cheerful people at a murder mystery party that my husband and I had hosted. Our guests wore Victorian Gothic costumes that delighted us as they arrived at our home, one more elaborate than the next. It was a perfect night. I was blissfully unaware of how sick Josh would become in a few short months…and how devastatingly different my life would be in a year.

While I was surrounded by gaiety, all I wanted was to go back in time when Josh was alive and well. I was mourning not only my child but my old self and my life before loss.

There was no point in staying at the party feeling miserable, I decided, so I made a beeline to my husband to tell him that I wanted to leave. But as I approached him, I saw that he was surrounded by people. He was one of the happy ones, laughing, having a good time - and I realized I’d have to push my feelings aside. I didn’t have the heart to spoil the night for him by asking him to leave.

I pulled my mask down, which covered everything but the lower part of my face, stretched my mouth into a smile, and joined the party, fully aware that I was literally masking my emotions. But I felt it was necessary for this particular situation, albeit, exhausting, because the amount of energy it took to maintain the smile, to feign interest in the game, to make small talk with the guests and make my husband believe I was having a good time, left me depleted by the end of the night.

Yet no one noticed - not one person in that room realized that I was bereft of any shred of happiness. I simply melded into a room of smiling faces, my grief successfully disguised.

I don’t need a mask to cover up my emotions. I’ve actually become quite adept at faking smiles and pretending I’m enjoying myself - or at least that I’m in the present moment- because my thoughts are always on Josh. All sorts of memories stream through my mind, some happy, others sad, while I attempt to keep up with conversations, and no one ever notices. Is it because I’m so good at masking or because my smile is often taken at face value and assumptions are made about how I’m coping? I believe the answer is the latter, because my grief is often hidden.

I recently read a poignant account of loss by a friend that addresses the unseen nature of grief. In her book, The Worst Life Has to Offer, Venetta Cox Mlynczk chronicles the harrowing experience of losing both of her sons, Brandon and Devon, over a six month period. After her life was completely upended Venetta reconnected with a friend who was unaware of the tragedy and was completely shocked, because on the outside Venetta looked like everyone else. Her friend commented, ‘It’s like you have an invisible illness.’ Venetta goes on to explain her reaction to her friend’s comment, “This definitely struck a chord with me, the invisibility of grief. How no one would have a clue of the depth of sorrow I was in by physically looking at me.” This resonates with me as well, because my grief is not immediately apparent to the outside world.

What people see are snapshots of my life, whether on social media or in public, over dinner or coffee, smiling in a specific moment in time, seemingly happy, not realizing or understanding the depth of the emotions and the internal dialogue I have with myself - the coaching to keep it together - that goes on below the surface.

Sometimes I feel genuine joy and happiness that may last hours or days, but the sadness is always below the surface. It only takes a song, a memory, or seeing a young man who resembles Josh to bring me to tears. I don’t think it will ever be different, and that’s okay, because I’ve learned to hold the joy in one hand and the sadness and grief in the other.

Ultimately, my level of comfort with my social milieu will determine whether I cover up my emotions. If I find it necessary, I know that it’s only for a brief period of time and that I have outlets like grief support group, journaling, and therapy where I can let the feelings flow.

I’ve come to terms with the complexity of grief and my new reality. I may look okay, I may smile and laugh, sometimes earnestly and other times as a way of getting through a situation, but I will always grieve for my son because I will always love him. Some say that the grief doesn’t get any smaller; it stays the same, and we grow around it. I’m still young in bereavement so the necessity to mask emotions exists in order for me to function; but if there’s a time when my mask slips and my grief spills out, it’s just the eternal love for Josh expressed through my tears.

If you or anyone is struggling with grief, please reach out to the following organizations.

And if anyone is interested in reading Venetta’s powerful book, the link is found below as well.

Also, these Substack blog posts will be featured in Get Griefy Magazine launching soon! You can support the magazine by clicking here .

Grief Support and Resources

The Compassionate Friends

Bereaved Parents of the USA

Vanetta's book: The Worst Life Has to Offer