Hello and welcome to the Living Grief Podcast. Here we will discuss live, love, loss and how best to navigate this new world of living grief. Each episode will have a discussion with expert guests on grief, bereavement, living life, loss, and love.
Thank you for listening to this inaugural episode.
No one tells you that there is a bottom to grief. But coming up to two years of losing Sophia, I feel like I’ve hit bottom…rock solid hard cold bottom.
I sit here most days in tears. On the days I don’t, it’s because I AM in tears. On the rare occasion I can pull myself out of the dark it’s usually because someone else has dragged me out or I feel purpose in the work that I am doing that day. Living in the moment means living in the minute. The minutiae has become the strings that are holding me up, barely.
When you research grief a lot of antiquated thoughts and theories are still touted as best practice and many professionals still follow those principles. But dig deep enough and you can find some sweet spots in the literature and profession.
In my search for solace, I found an article in the American Psychological Associate, A New Approach to Complicated Grief written by Karen Kersting. Its dated, 2004, but much of it resonates as it speaks to new understanding of the biopsychological of the death of a loved one. A few things stood out for me. For one, in the past, the mental health community used to label bereft individuals like myself as having a ‘disorder’. Basically, if you didn’t grief in the ‘normal’ way you were labeled as ‘disordered’.
With enlightened understanding and meaning around ‘complicated grief’ there are new recommendations in the way severe grief is diagnosed and being treated. I recently watched the Netflix series The Kominsky Method. Alan Arkin’s character loses his wife and ends up ‘seeing’ and talking to her on a regular basis as he navigates his new world. In Kersting’s article she shares Robert Neimeyer, PhD from the University of Memphis, research that the widely held assumption that grieving requires "letting go" is being questioned...
Instead of gaining closure or trying to say goodbye, the goal of grief counselling should be to foster a constructive continuing bond with a deceased person, he says. This can be accomplished through remembering the good times, setting up an internal dialogue with a lost loved one, continuing to think of that person on a regular basis and imagining the person's reactions to current life events and problems, he says.
Knowing that I have the factors for complicated grief, such as changed relationships with family and friends, feelings of meaninglessness and ruptured beliefs that have spurred health-threatening grief I figure I may just start talking to Sophia on a regular basis. What do you think?
Grief is hard, so very very hard. I don’t have the answers and I am not sure anyone else does or will. But knowing it’s not about letting go is important. I need to talk to Sophia, to remember moments of joy and I am hoping that will help me lift up from bottom.
If you want to help; I need work that gives me purpose. No, really I do! I need a job!
I need to be gently coerced out of my cocoon.
And I need to be supported in fostering a continuing bond with my beautiful, very much, missed daughter, Sophia.
So if you run into me, just give me a hug, a purposeful job or a memory of Sophia that brings you joy. And, hopefully, I can slowly come up from the bottom...
To listen to this blog as a Podcast, Click below
We have to feel them…
It was a ridiculous time in the morning, 1:25am, and I was sitting wide awake unable to sleep. All night I had had a weird feeling in my stomach but was unable to recognize exactly what it was.
I was in the ‘city’ for work and not being able to sleep in my hotel room, I got swept away watching One Mississippi on Prime Video (thanks to Amazon and Tig Notaro). I started watching the show about a month ago and the depth of vulnerability each character is able to evoke through the camera is extraordinary. I was hooked. However, on this night, there was a particular scene that clearly struck a chord with me…
In a pivotal scene, Sheryl Lee Ralph’s character, Felicia, says “You cannot pretend these things have not happened. We have to feel them FULLY in order to feel anything else…”
It was in that moment that I realized this particular night was the very first night I had spent alone, physically alone, since my daughter, Sophia, passed away exactly 18 months ago. Ever since the night of January 1st, 2017, I have not been alone in my own space, away from the sanctuary of my home, from the people I love, not even once.
And I feel…
Conveniently, I have been trying so hard not feel these past eighteen months. Countless times, I have been told ‘oh, you’re overreacting’, or ‘it’s time to move on’, or ‘you’re too emotional’. Toss in society’s innate inability to have difficult conversations or be comfortable in someone’s grief and you’ve got the perfect recipe for thinking you can’t or shouldn’t feel. Most days I find I am dismissed, invisible, abandoned even, by the people in my life I thought would show up.
I have been medicated, have gone to therapy. I even tried smoking pot to ‘feel’ less; grasping for a moment of euphoric ignorance to drown my sorrow. While medication may necessary and therapy incredibly helpful…
“You cannot pretend these things have not happened. We have to feel them FULLY in order to feel anything else…”
I picked up my phone and began to scroll through videos I have of Sophia and I sat there that night, alone, and I gave myself permission to feel; raw, emotional, deep longing for my daughter.
I realize that part of coping is feeling; and in order for me to be present in my life today, I cannot pretend Sophia didn’t die. In order for me to feel deep love, laughter or seek joy, I also need to feel my grief and sorrow FULLY in order to feel anything else.
And if you’re uncomfortable with that then fuck off. Some of you already have. But for those of you who have been steadfast, tender, true…I am grateful.
I long to feel ‘ok’ and maybe I won’t ever get there. But I certainly won’t stop feeling FULLY in order to appease the masses , and I certainly WILL feel fully to live my grief among the safety and sanctuary of not only those around me, but with those who aren’t.
GRIEF GRIEF GRIEF GRIEF GRIEF GRIEF GRIEF...
That word beats into my brain day in day out; it pounds on my heart and has ripped out any normalcy that may have existed in my life. I can taut the origin or definition of the word 'grief' but what interests me more is that it is considered a noun; referring to a person, place, thing or idea.
This past year grief has been a person, has been a place, has been a thing and prior to January 1st, 2017 was an idea I dreaded to experience but knew was inevitable. Leading up to the first anniversary of Sophia's passing, the anticipation nearly killed me. My chest hurt; piercing, stabbing, searing pain right through to my back...I was sure my heart was really going to break and I would drift off into the same unknown ether as Sophia.
I found myself longing to be back in the room she passed; and honoured her passing sitting in a comfy chair at Canuck Place Children's Hospice. Walking back into that space seeing the same nurse who was on that day, Roxy, the cook in the kitchen, the same counsellor tending to my needs, it was deja vu. The only thing missing was Sophia...and while we lit a candle in the window at 8:45am, the ache of missing her skin, her smell, her laughter, bore into my throat and I sobbed missing my daughter.
This past year has been a life lesson, for sure. People showed up when I least expected it and those I expected, just didn't show, still don't show. I allowed myself to be bullied, allowed others to dictate how this year was going to unfold, and found myself catering to everyone else's needs...only to be told I am selfish, manipulative, oh and my favourite...'get over it, move on' from people who never had the same relationship I had with Sophia. From people who over the course of Sophia's life, didn't show up or really understand the enormity of what caring for her entailed.
On the contrary, I also experienced the extraordinary compassion and love of people. The group of women who showed up are selfless, remain unintimidated by my sorrow, and have allowed their own vulnerability to marry my own creating a community of strength, resilience, support, laughter and a lot of wine...
My best friends became my family when we needed each other most.
And I found love...true, honest, deep, love from someone who has not left my side despite my pushing, despite my crazy, our crazy My heart beats deeper because of who they are and the unconditional love and adoration that has become the foundation of our relationship; decades in the making.
So this year of grief has passed. Another one to follow, by another, and another, and another. This is the journey of a bereft parent. Grief doesn't end and gratefully our understanding of grief is changing. The concept of living grief begins well before our loved one passes and the experience becomes a part of our life for ever more.
The day of Sophia's celebration of life Harris Barn become covered in bald eagles; dozens and dozens of eagles. When an eagle appears you are on notice to be courageous and stretch your limits. Sophia was the epitome of courage and stretching her limits. She believed she could be capable of anything.
This next year I can only hope that living grief continues to shape my life and those in it. Sophia was one of a kind and loved deeply. She found joy amid suffering, laughter at every crazy thing, she loved living and like the eagle, who soars higher than any other bird, Sophia soared higher than anyone I have ever known.
I would be doing her an injustice if I let the grief and loss wash away my own life, or the life of those who have endured one of the hardest years I have ever experienced. I know it is going to continue being a challenge. I know that people will come and go, disappoint and surprise. But the depth of love that Sophia shared endures...in those who love her and in those Loved Sophia.
Consider this an invitation to come join me on the journey...
The one year anniversary of my daughter's death is fast approaching. Stepping into this holiday season the memories of those last few weeks with Sophia barrel into every waking moment. Grief comes in waves but the memories of last year have hit me like a sack of rocks...I feel battered at best. And the word 'grief' does not hold enough volume to explain this experience enough.
Quite often I'm found staring out in front of me; my eyes darting in hysteria as my mind and heart remember those last weeks. The images flash through my mind and I become drowned in the sorrow of suffering from losing a child, remembering her suffering all to well, battling something we could never win.
Throughout Sophia's life, I would be asked 'had I known Sophia was going to be so sick and be born with a rare disorder would I have kept her', meaning would I have aborted my pregnancy. Before this time last year, I would have said a resounding YES. Of course I would have still had her, what were they thinking?
January 1st, will be a year since she passed and I am not so sure anymore. Not just to alleviate her suffering but, perhaps, to selfishly, avoid my own. I have been listening to Sam Harris's podcast, Waking Up and he recently had David Benatar, a professor of philosophy, on to discuss his advocacy of antinatalism based on David's book Better Never To Have Been: The Harm of Coming into Existence. Most of us, as an existing person, understand good things are good...and bad things are bad. David argues that the bad is worse than the 'good is good'. But if that person never existed, the necessary absence of the good wouldn't be bad because there would be no one there to be deprived; thus his antinatalist position.
During the podcast, I began to consider that Sophia's non existence would have alleviated her suffering. I then shifted and thought, then my non existence would have alleviated her suffering, too...as would my mother's non existence, her mother's non existence, etc, etc. Like Benatar, I was beginning to believe that existing is harmful. My existence was harmful to Sophia...I birthed her, she suffered. My mother's existence was harmful to Sophia because she birthed me, Sophia suffered. Benatar's philosophy is not lost on me at all. I get it...there is undoubtably harm coming into existence. We will all suffer...to some degree, at some point in our existence, or we will bore suffering on those around us.
However logical that may be, I find his chain of reasoning counterintuitive on at least one significant point that, as Harris argues, imperils Benatar's antinatalist thesis. Benatar posits that bads are not bad because there's no one to suffer them, yet never-to-be-experienced good he doesn't count as a loss because no one's there to not experience them.
How do I weigh the existence of Sophia's suffering against the good she experienced? How do I weigh all the joy she brought me with the suffering that I am experiencing now, after her death? How do we measure the depth of love that we have for someone and is that, like many believe, in direct relation to the degree of grief we endure once they are gone? Our consciousness as humans has evolved so much that did you know we are thought to be the only species aware that we are destined to die?
So is that a good enough reason to not exist? Knowing Sophia was going to die, should I have not allowed her to exist at all?
As the anniversary of Sophia's death ebbs closer and closer...my heart aches. The longing, at times, is unbearable. The last three weeks of Sophia's life were filled with her screams, her desire to 'go home', the gut wrenching decisions to keep her comfortable, wiping away the tears drawing down her cheeks as she, herself, struggled with her body shutting down, with the human consciousness aware that we are destined to die; Sophia was destined to die.
I am destined to die...and I am suffering before that day inevitably comes because I exist. I am suffering because Sophia existed.
Last year, I would have said it was worth it...having Sophia, being her mother for 16 years was worth the suffering. But coming up to this one year anniversary, I am leaning the other way. I don't think anything or anyone could convince me that the suffering Sophia endured those last few weeks is worth existing for. Maybe this makes me incredibly pessimistic, or maybe this is how the depth of my grief translates. I don't know...
Happy Anniversary Sophia...I will be where you took your last breathe; sitting, being, crying in the space you once occupied...and still occupy in so many ways.
I love you to the moon and back...
When I started out on this journey, just over 17 years ago, I understood that at some point it would come to an end the moment Sophia took her last breathe. I was focused on ‘living’ grief through every moment I had Sophia next to me. With each loss, the grief dug deeper and deeper, and my fear had me crawling on my hands and knees to the edge not wanting to look over; down into what I thought was a crevice I’d never be able to pull myself out of.
Sixteen and a half years with Sophia did NOT prepare me for living after she was gone, is gone. Living grief has taken on a whole new meaning, a whole new version of profound loss that no matter how long we have our children here for, can never prepare you for when they pass away.
I thought that like B.C and A.D, there would be a ‘before’ and ‘after’ for living grief. I was wrong. Living grief, with all its ups and downs, is perpetual. There is no before or after Sophia. Sophia ‘is’…and my life with her ‘is’.
Living grief is no different. It ‘is’. The profound journey of ongoing loss doesn’t end. It shifts, but it doesn’t and hasn’t ended.
Each day that passes without Sophia is its own milestone. I got through the first month, the celebration of her life, the first Easter, Mother’s Day, and my first birthday without her home made card or her arms hugging me tight. Then came her birthday…it ‘would have’ becoming a new term in my vocabulary.
Most days I don’t recognize my life. I’m in a new home, I’ve a new job, my world is smaller but so much bigger. The boys are off on their own, beginning their own wondrous life.
And then there are the days I feel I can’t possibly go on…my body literally hurts from the pain of losing one of the most extraordinary little humans I have ever had the privilege of loving. There are some people who just don’t understand the enormity of what it is to lose your child. They are ignorant, naïve and lack the sense of compassion that embodies what bereft parents like me need, regardless of how much time has passed.
Amid it all denial still remains the sweet spot. I see her every day, I feel her around me with each beating of my heart; a song, a sound…and she is right here next to me.
Living grief…the profound journey of ongoing loss continues…
A great statement regarding palliative care for children from the International Palliative Care Community following the death of Charlie Gard resonates so deeply personal to me, as a newly bereft parent. I struggled throughout Sophia's life in making decisions with her regarding quality of life. More often than not, we were met with push back from clinical teams in the hospital setting, community practitioners and even some friends and family who felt exhausting all and any option for remedy was the best approach / best practice.
Sophia led the charge early on, in wanting a choice in decisions effecting her body. Canuck Place Children's Hospice and our community paediatrician supported Sophia and myself in making well informed and thought through decisions regarding any procedures, medications, treatments.
The last three weeks of Sophia's life were so very difficult. Her body was failing her but her spirit and desire to live was epic. Sophia was upset and sad that her body was failing, tears streamed down her cheeks regularly. Yet, every time the doctors, nurses or I asked her if she wanted to be more awake or did she want us to intervene, she clearly said no. Her pain and discomfort were extreme and her body was relentlessly shutting down.
The last twelve hours of Sophia's life were the most comfortable. She slipped quietly away...
"Palliative care is life affirming and not about giving up, but about ensuring that the child can have the best quality of life within the realities of their condition."
This is true for Sophia's entire journey and most importantly, during those last few weeks. Palliative care is LIFE AFFIRMING...and should be afforded to every child with a life limiting or life threatening condition.
Loved Sophia ❤️❤️
Well, it’s a difficult thing to have to write a eulogy for your child. Where do you start? How do you end? How can you possibly sum up your beautiful child’s life in 8 minutes? Do you get up and read it yourself…or do you get someone else to because it’s a difficult thing.
But Sophia is my best friend and was my happy companion for 16 years, 4 months and 29 days. And they were the most extraordinary 16 years, 4 months and 29 days. And it is my honor to come up here today and be Sophia’s voice, to share my heart, to share our loss.
I knew from the moment Sophia was born, much like with her brothers, that life would never be the same again. I realized just what an under statement that may have been when I found myself sitting in the back of an ambulance less than 24 hours after she was born…Sophia was on her side, in an isolette (like an incubator) with just a little diaper on…the paramedic and I sitting next to her. That entire ride to Neonatal ICU Sophia just looked at me…stared, with these big wide beautiful eyes. There was a wisdom in those eyes right from the beginning.
Anyone who knew Sophia in her early years, may recall Sophia didn’t really talk much, she rarely cried even though we relentlessly poked her little toes and fingers, gave her shots in her legs, put tubes up her nose. She was so good, so patient, so enduring.
Sophia, despite all her medical and physical hurdles, is and was a typical child and teen…and, yet, at the same time, she was so much more.
For years, and even now that she has passed, people have come up to me and said how Sophia is a miracle, how she has surpassed everyone’s expectations, how she’s lived longer than anyone anticipated. The thing is, while Sophia may have outlived everyone else’s expectations…she didn’t outlive her own. She lived large, she lived boldly. She is courageous. She had big dreams and big goals of a life full of joy, full of laughter, full of music and full of people…
Sophia loved people…early on she would sit contently in your lap, curl up in the croak of your arm, be plunked on the counter at the nurses’ station. She was so tiny that up until she was about 3 ½ I would carry her around in a little bunting bag but always facing out…never facing in because she loved people, and she longed to observe the world around her. She just wanted to be part of the action. It didn’t matter how she was feeling, whether she was in ICU, or a music concert, or at school, camp, home…she wanted to always be with people.
As her health started to change this last year and she couldn’t go to school anymore, her iPad became her life line to the world, to people and those around her. For those of you who were Sophia’s Facebook friend…you know what I am talking about. Sophia liked everything on your Facebook feed. She loved Messenger and FaceTime. And it didn’t matter if you were working, in the car, at school…she would bombard you with calls and messages until you finally succumbed. I know her cousins that are here can certainly attest to that. Right, Kimmy? And my brother, Bill, who set a FaceTime date every evening with Sophia. Where she would end her night laughing and giggling at his antics.
As Sophia became a teenager and as her health declined, she definitely became more discerning. She had a preference…young, pretty, female. I’m not sure how my brother fit into that, but she did make exceptions. And you knew when you were in, if you suddenly felt a little tickle on your leg, or under your arm. It was Sophia’s way of saying, ‘Hey, I think you’re cool, I want to be your friend’.
But when you were in, you were in. Sophia loved you no matter what. You will notice the buttons that were handed out, and on the schedule for today…has, in Sophia’s own handwriting, Love Sophia. Every time Sophia posted to Facebook, or sent you a text, or message, or even in her communication via iPad with her nurses, she always signed ‘love sophia’. It started to get autocorrected to LOVED Sophia…so every time she signed off, the last words she said were LOVED SOPHIA.
And it fits…loved Sophia. She loved large, she loved boldly, she loves courageously.
Everyone here today has in some way, been touched by that love. Either as a volunteer, a clinician, a nurse, through school, as a peer, through her brothers, or through us as her family and friends. There are a lot of people here in this space, and Sophia shared her life and her love with each and every one of you.
And while she lived large and lived boldly…the last few years, her world became smaller. Sophia’s body was being impacted in ways she did not like. And this past year, when she went blind her world became even smaller.
But what kept her going, beyond sheer determination and stubbornness, was her ability to see and feel the joy in every day, in any moment, with whomever she was surrounded by. And it’s why the auto correct LOVED Sophia resonates…she was loved, she was joy. And everybody here today loved her and contributed to her joy.
The last three weeks of Sophia’s life were difficult. There was not a lot of joy. But there was a lot of love. And even when she was screaming ‘I don’t want to be here”, “I’m done”, “I hate you” to those around her…she was loved, unconditionally, tenderly.
And one of the most important and hardest things I’ve ever had to do as Sophia’s mum was help her let go. She held on because she loved, and in the end she was able let go because she was loved.
We have all learned something through our touch point with Sophia. For myself, as her mum…as her caregiver, her companion, I have learned that despite the pain, despite the discomfort, despite the world changing around you or maybe your body failing…you love. And that love will turn into joy, into laughter, into courage. You will live large; you will love boldly…
Sophia is my best friend and it is my privilege to love my beautiful daughter and to be loved by her. There isn't a moment that goes by that I don't miss her terribly, longingly. I am forever changed.
Her remarkable legacy will continue…in me, in her brothers, in my brothers and sisters, her cousins…and in everyone here today, who Loved Sophia.
Two weeks ago today, my beautiful daughter, Sophia, died. I have tried to come up with a more eloquent way of saying that…but I can’t because Sophia died. She didn’t just slip or pass away. The last three weeks of her life she struggled; she suffered both physical and emotionally with what was happening to her body. There were screams of wanting to go home, to leave her alone, and tears…lots and lots of tears.
And in the end she stopped breathing and died. It’s hard, it’s painful, it hurts like nothing I have ever experienced before. Why should I or anyone else sugar coat the reality of losing your child? My child. There are moments when I can barely breathe. There are moments when I desperately want to go and be with her…
I’ve come to realize Living grief and living IN grief are two completely different journeys. I have reluctantly moved into the latter. In living grief, denial is the sweet spot. It is where we can push aside the medical issues, the disease of our loved one and live in the moment, be present, seek joy, and love love love every minute.
In grief, denial is a fresh wound that refuses to heal. That keeps bubbling over, infected, oozing. Dropping me to my knees when I hear a certain song, keeping me on the brink of tears until I no longer have the strength or resolve to hold them back and have to simply stop and let the ache in my heart pour out of my eyes for what seems like an endless amount of time.
Fourteen days, three hours to be exact…as I write this, Sophia died.
There are moments when I forget. I think oh, I can go see her at Canuck Place or I can call them to check up on her. She is there for respite. Then it all comes flooding back, that she is gone. And all I am left with is her ‘things’ strewn across two homes, the last piece of clothing she wore in a zip-lock bag to preserve her smell along with a strand of hair I cut before they took her body away.
Maria Konnikova (@mkoonikav) wrote an article in The New Yorker last spring How People Learn to Become Resilient. Maria often quotes Martin Seligman, the ‘father of positive psychology. In this article, she indicates that Seligman found training people to think of their situation ‘from permanent to impermanent (“I can change the situation, rather than assuming it’s fixed”) made them more psychologically successful and less prone to depression.”
How do I do that in grief? I can’t bring Sophia back; her death is permanent. Where does the impermanence lie in the loss of a loved one? How do I learn to become resilient amid the pain and loss?
Or, do I sit in the depression? Allow myself to weep, to process, to feel, to fall...
Fourteen days, four hours, and forty-five minutes…
"The cradle rocks above an abyss, and common sense tells us that our existence is but a brief crack of light between two eternities of darkness. Although the two are identical twins, man, as a rule, views the prenatal abyss with more calm than the one he is heading for (at some forty-five hundred heartbeats an hour). - Vladimir Nabokov, Speak, Memory
Sophia has ups and downs daily, sometimes hourly...she can barely catch her breath wrenching, choking on her own secretions, her body slowing down running to pause.
Every one of her last breaths wrapping themselves around my heart, like a vice in my chest tightening, and tightening...my free flowing tears lubricating the sense of loss that grows with every moment closer. I can barely catch my breath in-between 'change'. All either one of us can do is breathe...
I am a mother witnessing her child die. Labor, glorious labor…it’s three stages of agony with a beautiful outcome. Witnessing your child die is a cruel form of labor with an outcome no mother wants. It’s laborious in its truest, rarest, rawest form. The pain and agony shifting from uterine and cervix to chest and throat…the contractions becoming more intense the closer death seemingly gets.
In child birth, we experience early labor, active labor and transition. Parenting a child with a life limiting illness we go from cradle, to bedside, to grave.
I’m at bedside…vigil. The sunshine currently streaming through the windows creating a halo above Sophia’s head, teasing me with a heaven on earth I only wish we knew.
Forty five hundred heartbeats an hour dropping to twenty seven hundred…fifteen breaths a minute dropping to eight, the cradle rocks…
Beverley Pomeroy is an awarded and highly sought after Community Engagement Strategist, Speaker, Author of Living Grief; The Profound Journey of Ongoing Loss. Beverley’s community service began with a fifteen year career in private health care working for MDS Inc (LifeLabs). This community health care role developed her acumen not only for serving people in need, but also her strength in business management and organizational renewal.