Beverley Pomeroy
Killing her softly…

Very rarely do I loose my mind in the face of a medical crisis or intervention in regards to my daughter and her long term seemingly progressive disease.

Today was one of those days where I lost it.  I mean, I completely utterly lost ‘it’.

I was in a meeting to discuss where we are at, what support my daughter needed and what we may need moving forward to ensure she could be her ‘best self’.  Best self being happy, pain free, active, social, and full of curiosity and joy (a staple in Sophia’s personality). 

We have been in ICU for over a week for what was diagnosed as the onset of respiratory failure.  Yes, respiratory failure…Sophia now requires non invasive ventilation (bipap) which will breathe for her by pushing positive air into her lungs using a machine.

It was and still is disconcerting.  Despite the best of theories and an MRI, no one can really identify why Sophia’s brain decides to stop sending the signal to breathe…and on top of that, she has presented with some physical changes and what looks like issues with swallowing.  Sophia has barely eaten since last week and when she does she has this little throat clearing cough that is apparently the bodies way of moving the food through her throat into the right area.  The risk is choking or aspirating (food entering her lungs), something we haven’t experienced, yet, knock on wood.

Yes, it’s a lot…

Thus the importance of the meeting to really discuss where we are at and how we would like to move through this next stage.  Or at least, that is what I anticipated.

Instead, I was met with professional opinions that not only came across priggish but worse…they completely trivialized the horrendous journey that Sophia has been on for the better part of a year and a half never mind the life long fourteen years.  The specialists contradicted their own observations and initial conversations with us and I felt bullied down an opinion that I still, fervently, disagree with.

It is moments like this that I feel overwhelmed.  It isn’t from caring for a daughter with a life threatening, life limiting disease.  It isn’t the sleepless nights, or days of organizing a plethora of medical equipment, medication, appointments, therapies.  It isn’t the worry.

I am overwhelmed with disappointment in those we trusted, I am overwhelmed with emotions that waffle between anger and utter helplessness.  I am overwhelmed in the lack of acknowledgement of my daughter’s suffering and overwhelmed with the abysmal lack of compassion that exists towards children like mine by professionals like these on a regular basis.

I have been a good advocate for my daughter.  There is not one person in this world that would disagree that I have done nothing but provided Sophia with the best care, the best resources for support, the best environment to be her best self.

Continuing this ignorant pretense is killing her softly…and unless someone in the realm of this professional medical environment starts to stand next to us, self effacing and help carry Sophia through this vortex of a disease she has, that is exactly what will happen.  I have no doubt…

And I know, there is a long line up of parents and children with rare, complex disease process behind us who share in my frustrations.  And who like me, are tired…

So yea, I lost it today…big surprise.

Finding Purpose in Living Grief…being the Great Prestidigitator

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” 

Thich Nhat Hanh

We are ten days into Sophia’s Joy List and while the joy list was meant to help Sophia cope and manage her pain, there has been a secondary impact.  And that has been on me…

For close to fourteen years I have been Sophia’s primary care giver, I have been the one who snuggles with her when she is uncomfortable, the one she reaches out to when in pain and discomfort, the one who makes the tough decisions sometimes grappling well past midnight.

I don’t always feel I get it right but I know I am doing right.  Being Sophia’s mum is one of the most difficult and yet, rewarding aspects of my life.

However, the past six to seven months I have felt helpless, hopeless.  With the increase in Sophia’s pain and central breathing issues and the inability to use medical interventions to its fullest to abate her pain, both Sophia and I have been left to conjure up our own methods or combination of such to get through the moments.  And the moments have increased…what was once every few months, turned to every few weeks, has now turned to every few days.

I feel like a prestidigitator and with slight of hand can mask Sophia’s discomfort through distraction or manipulation.  It isn’t a part of Living Grief we expect and when we are taught to face our challenges we don’t ever get taught that becoming a legerdemain is a good thing!

What I have learned in the past ten days is that slight of hand, that gentle manipulation this way or that in living grief especially in pain and symptom management is a healthy way to manage.

This past week we had the opportunity to spend an afternoon learning to draw Olaf, from Frozen, with the amazingly talented and wonderful Kat Thorsen.

And Kat was a master prestidigitator not only with a pencil…but throughout the experience in the park with Sophia.

The joy Sophia experienced and the delight she had drawing Olaf with Kat gave me a sense of purpose.  That while we created this joy list for Sophia as a distraction of her pain, it has also distracted me from living grief and allowed me the freedom to just sit in the sun and watch my daughter draw, laugh, feel joy…deep joy.

Watch the video here…and delight for yourself in the simplicity of Sophia’s Joy List on a sunny day in the park.

http://www.gofundme.com/9xribk

Pain and Symptom Management, the mind and body way: Sophia’s Joy List…

Hey everyone…


As you know, Sophia has been in and out of Canuck Place Children’s Hospice a lot for the last six months for pain and symptom management.  It has come to the point that with the complexity of her disease, we have to be mindful of the medicinal support Sophia is on.  Unfortunately, most of the pain medications she requires suppress her respiratory system and put her at risk (she stops breathing).  So we are left in a precarious position of balancing and managing Sophia’s pain…
With the amazing support of the counseling team at Canuck Place and through lots of dialogue, we have decided to help Sophia through mind and body means in conjunction to medicinal measures.  We ALL know Sophia is resilient and has a tenacity for life that far exceeds the norm.  However, the pain is getting such that she is not wanting to go to school or do much.


As a way of encouraging Sophia to continue seeking her joy, we asked her to create a joy list…and we videotaped it.
Please join us in participating in the many activities, share with your networks or even help support her journey.  Feel free to even toss some new ideas out there for Sophia to try.


Our goal is to create adventure and activities for Sophia to look forward to…despite the enormity of what she endures each day!
Will you join us?   You can check out the video on any three links below:

Facebook Group
Youtube

Thanks!!

The Joy List - coping with Living Grief

There are moments in life that catch us, that make us hold our breathe and want to turn blue.  The past few weeks have been that for me…and there have been so many moments that i just wanted to curl up, tuck away and let the world go by.

But you can’t…life isn’t like that.  Living grief knocks us on our ass so often that after a while you think you become numb.  Don’t get sucked into that false sense of numbness.  In living grief, you can guarantee that just around the corner you will get a slap and wake up to the reality that the person you love is suffering and you both experience this unbearable uncertainty.

A good friend cited these tumultuous moments of living grief as ‘the insanity of not knowing how to be or how to feel or what to think’.  And that you can see it in action.

When there is so much uncertainty there are a few ways to cope.  I am learning to practice mind, body therapy and with Sophia in constant pain, have been encouraged to facilitate this modality for her, as well.

But one thing I believe we ALL benefit from as a coping method is having something to look forward to, to create a sense of hope through anticipating an event or experience.

So that is just what we did for Sophia…this is HER coping modality.

We ALL know Sophia is resilient and has a tenacity for life that far exceeds the norm.  However, the pain is getting such that she is not wanting to go to school or do much.

As a way of encouraging Sophia to continue seeking her joy, we asked her to create a Joy List…and we videotaped it.

Please join us in participating in the many activities, share with your networks or even help support her journey.  Feel free to even toss some new ideas out there for Sophia to try.  She’s pretty open to trying new and exciting things!

Our goal is to create adventure and activities for Sophia to look forward to…despite the enormity of what she endures each day!  And through this method, help her cope with her own living grief.  

Will you join us?   You can check out the video on any three links below

Facebook Group 

GoFundMe 

Youtube 

What suffering is…

David Brooks of the New York Times has written a wonderful Op-Ed titled “What Suffering Does”.  It is being shared widely through Social Media with a nod from those who appreciate the experience of suffering and the lessons it can embody.

What suffering does, Mr Brooks suggests, is that people are “clearly ennobled by it” and that the “response to this sort of pain…is holiness”.

Roshi Joan Halifax discusses suffering in length in her book Being with Dying.  Roshi Joan looks at suffering as a lotus flower; "the roots of pure white lotus are buried deep in the pond’s dark mud.  But it’s that very mud that nurtures and feeds the lotus, making it possible for the flower to open in splendor to the sun."

"The lotus flower is really our awakened mind, nourished by suffering."

For those of us ‘living grief’ we don’t have an opportunity to work through our suffering, to walk out the other end.  We are ‘living grief’ day in day out, suffering becomes ceremonial and an almost reverent experience.  Which is why it appears like a holy response.

At some point in living grief you cede, abdicate to divinity, if you want to call it that, or to God’s will, to a greater power.  Or maybe you abnegate conventional medicine.  The relinquish of outcomes bears vulnerability and provides us the appurtenance of being present, the ‘awakened mind' as Roshi Joan calls it.

I don’t know if my daughter is going to live another thirteen years or die tomorrow.  I sit up each and every night, on the side of my bed, looking down at her as her body decides to stop breathing.  It has become isochronous.

To practice living grief day in day out, is nourished suffering.  And beyond the holy response, and for whatever objective suffering’s purpose is, we do dig deeper and deeper within ourselves; we become the curator of our own resilience.

What suffering does, what suffering is affords us an experience that makes us human, that sheds our walls and can free us, if we let it, from the confines of a world that is more about acquisition than altruism.

I wiggle my toes in the ‘pond’s dark mud’ each and every day and I can’t help but believe that my daughter is that beautiful lotus flower that finds joy in the simplicity of the sun, and shines her suffering on all those who cross her path.

Canuck Place Teen Camp…Building Belonging

"We find delight in the beauty and happiness of children that makes the heart to big for the body". Ralph Waldo Emerson

This past weekend we had the opportunity to attend a Teen Camp through Canuck Place Children’s Hospice at Camp Squamish Easter Seals.  Sophia turned thirteen this year so it was our first camp.

Sophia’s care is incredibly complex.  Just to go out for dinner is a process of packing meds, having enough needles, ensuring we have a full tank of oxygen, wheelchair, etc.  Now imagine that ten fold trying to get Sophia to camp!

But we did it…and I dropped Sophia off on Wednesday for what would be the experience of a lifetime.  The teens stay from Wednesday to Friday without parents under the care of Canuck Place staff, nurses, volunteers and peer counselors.  It is a unique combination of medical, psychological and physical care that not too many organizations can pull off.

Canuck Place children and their families are unique.  I say that, however, I am not sure many people know just how unique or are comfortable with why we are unique.  All of our children have complex, life threatening diseases and the reality is, we don’t know moment from moment how long our children will live or how quickly their disease process will impact their systems robbing them of simple every day functions like walking, talking, eating and in some cases, breathing.

Going to camp gives the teens in particular an opportunity to be with each other and to create friendships in an open, inclusive environment supported physically by the medical team and supported emotionally by the counseling staff and each other.

By the time the parents arrived on Friday for our own weekend retreat, the teens had bonded and there was a swell of energy, laughter, comradery and mischief.  

I could write a lot about our experience as the emotions are still so fresh in my mind and heart.  But what comes to mind is from His Holiness the Dalai Lama.  The Dalai Lama talks about how we can find happiness and create community through three senses; a sense of care, a sense of concern and a sense of belonging.

For families like mine and for children like Sophia, experiencing all three of those senses is rare in any one place.  We have an exhausted medical system which parles into exhausted health care professionals.  We have communities starved for resources and anemic to respond to even the simplest of needs.  And we have parents / family care givers traversing a myriad of obstacles while in the midst of their own emotional journey of living grief.

Initially I was apprehensive to attend camp.  I brought my teen son along, admittedly for my own selfish fear of being alone, but also so he could be with other siblings and perhaps, in his own way, discover his own community of support through his journey of being a sibling of a sick sister.

With the majority of the teens attending having Duchenne Muscular Dystrophy I wasn’t really sure what, if anything, I would have in common with the other parents.

Well, after attending a few group sessions, eating all our meals together and staying up until 2:30am talking together in the lodge, it became apparent we have A LOT in common.  And it provided a freedom that I feel most of us rarely attain in our home communities.

Back to the Dalai Lama…the staff who put on this incredible camp, Susan and Camara, Gillian, Amy and Laura, Jenn, just by developing the camp itself show a sense of concern for our group of lost souls and have given us a venue and developed processes for connecting in a deep and meaningful way.

The staff and volunteers who come and take time out of their life to spend five to six days sleeping on uncomfortable mats and being ‘on’ for twenty four seven deeply care for our children and the siblings and parents who share their space so intimately.

My experience and the experience I know both my children had…resulted in a powerful sense of belonging.  We are a part of Canuck Place which already provides so much for us, but attending this camp provided something so much deeper, so much more meaningful from the intimate sharing circles, to the rhythm of our camp fire drum circle, to the laughter of paint ball, the squeals of delight cannon balling into the pool, even the tears of departure.

Canuck Place Teen Camp provided us with the very things the Dalai Lama indicates we need in order to have a happy, connected fulfilling life…a sense of care, a sense of concern and for sure, we found a sense of belonging.

This is the only way I know how to acknowledge the gift we received this past week…and to encourage those who can, to donate or volunteer, or subscribe to what I believe to be one of the most important resources we have in our province for families who have children with life threatening or life limiting illness.

Canuck Place Children’s Hospice…

ps: Sophia is going to sleep for a week now! :)

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"We find delight in the beauty and happiness of children that makes the heart to big for the body". Ralph Waldo Emerson

Celebrating Living Grief

Many people who experience living grief fall into the crevice of dichotomy around the holidays.  On one hand, we are grateful for another memory making tradition, for one more elated Christmas morning, one more opportunity to kiss and hug at the stroke of midnight, one more wish upon the midnight stars for a year filled with health and happiness.  We are filled with hope.

And on the other end of the barrel we are filled with melancholy for what could be all the ‘lasts’ and run around in a furor trying to gather and experience as much as we can in reverence of that which may be our last and final memory of the one we love.

The last few weeks have been difficult.  Those who know me well are probably rolling their eyes right now and nodding in agreement. It really is hard to explain what it is like living grief amongst the celebrating.  

I would wonder around the shopping centres and see people laughing or stressed out about finding gifts for their loved ones.  People hackling over fresh or frozen turkeys, greeting friends with hugs and how you doings.  It would evoke deep feelings of sadness from the pit my belly that without warning would erupt into a quiet sob and I would find my cheeks damp with tears.

I would sit in my car or drive around the back farm roads trying to deplete my body of tears, trying to cry out the living grief my heart is constantly bounded by.

At some point in time, I would wonder home and bring myself to step back into the celebration almost to the extreme in order to drown out the sorrow burrowed into my soul.

I would get up early on a Saturday morning and crawled up on a tall ladder to put up the Christmas lights all by myself.  I would scour the shops like everyone else looking for that special something that Sophia could open up with elation on Christmas morning.  I would pour myself into making a delicious turkey dinner for friends and family, taking it on myself as a symbol of that which I could do…can do, would do, needed to do as distraction.

But eventually, with all the celebrating done, with family gone home, friends tucked back into their own abodes reality eventually seeps back into our existence.

And this is where learning living grief is so important.  Living grief doesn’t ebb from one moment to the next, it doesn’t go away, there is no ‘getting through’ living grief or ‘getting over’ living grief.  It is living grief, the profound journey of ongoing loss.

It didn’t go unnoticed that all Sophia ate at Christmas dinner was mashed potatoes and soft cooked carrots with gravy because that is all she can chew and swallow now.  That she slept until 10:00am versus bounding out of bed at the crack of dawn on Christmas morning.  That there are more medications to administer throughout the day and night than last year.

It is a profound journey of ongoing loss and it doesn’t simply stop because the rest of the world is celebrating and it certainly doesn’t change at the stroke of midnight.

Christmas is traditionally about celebrating the divine, a night of miracles and the birth of a saviour.  New Year’s is about letting go of the past and welcoming the new, with fresh renewed energy.

I believe living grief necessitates believing in the divine or a higher power and rather than letting go of the past, we learn to shift into our new normal and at some point in our day within our journey we find the strength to breath new life into our step, and like everyone else…leap into 2014.

I don’t know what this year will bring and I try to not think about that.  What I do know is I will ride the energy of those around me and allow myself to be swept into 2014 with renewed energy and yes, even hope.

We are the curator of our own resilience and bringing in the new year is just another example of how we can do that even living grief.

The “value of deceleration and immersive attention”

So, admittedly, I am a nerd.  Anyone who has seen my desk knows I am a technology whore.  I love new innovative systems from Prezi to my Business Manager app to 99 Designs, blue tooth speakers, you name it.

All of these systems and programs allow us to create and communicate our work faster, more efficient, with flashy presentations and flare.  The last thirty years has seen technology advance at an accelerated rate unprecedented by any other time in history.

I am a product of what I call the ‘Miami Vice’ generation where we were taught that bigger, brighter, faster was better.  And, like many, fell into that trap on a variety of levels both personally and professionally.

Then life happened…as it does, slamming me into a concrete wall of reality.  And bigger, brighter, faster suddenly became heavier, vital, exhausting.

Unconsciously being forced to stop, to decelerate in my life and immerse myself in the world which I live and love, left me scared, anxious and full of foreboding.  

I was forced to slow down, to breathe and immerse myself within.

I woke up today to a shared article The Power of Patience “teaching students the value of deceleration and immersive attention' by Jennifer L Roberts, an art history professor.  I won't get into the entire article, you can read the full article on Harvard Magazine.

What struck me was that while we are developing new technologies and systems to increase the speed in which we work and play and communicate it creates a strong resistance to slowing down, to being purposefully contemplative.  We are being propelled to act, think, answer, react, share, engage, buy, sell, build NOW.

Professor Roberts instructs her students to sit for three hours and look at a piece of art they have chosen to write a comprehensive report on.  The time is purposefully excessive as is the forced environment for which they must sit and contemplate; a museum, an art gallery.

A year ago even thinking about sitting in front of a piece of art or sculpture for any length of time would have made me twitch!

However, a year and a half later, I relish the opportunity to sit and slowly experience the people and things around me.  I had the opportunity this year to work on an organic farm.  And while it was hard work, physically demanding ten hour days working in the hot sun or freezing rain, it forces one to decelerate even if you have production demands.  

Farming, by its very nature, is a process…takes time.  And despite our advances in growing, in accelerating the process, to seed, propigate, grow and harvest real organic food, you have to work with nature.  Nature is remarkably decelerated and pays attention to detail.

I would start my morning as the sun popped up on the horizon standing in rows of kale; curly green or dark purple beside the colourful chard. My job was to harvest anywhere between 75 to 100 bunches.  It would take a few hours.  And in those few hours of methodically cutting leaves and securing them in bunches I could feel my body and mind slow down, and breathe.  I would feel the wet dew on my finger tips, hear the birds rustling in the rows next to me, feel the heat of the sun pierce the morning cool and begin to hit my skin.

I would look over and a few acres away would be a co-worker on their knees picking salad greens, another methodically harvesting parsley, all contemplative in their own world, immersed in their own thoughts.

As time went on, I would know which rows I harvested, which plants had the best quality and yield.  I began to notice how the kale grew in contrast to the sun or rain, or how the caterpillars would only digest the largest, oldest leaves.  Even the chard began to have details I never noticed and I began to harvest in a way that nurtured re growth.

Professor Roberts concludes that “patience itself is a skill” and that we must start teaching "the deliberate engagement of delay" or for many of us, learning it ourselves. She states that the…"very fabric of human understanding was woven to some extent out of delay, belatedness, waiting".

And this is my favorite part of the article:

"Where patience once indicated a lack of control, now it is a form of control over the tempo of contemporary life that otherwise controls us. Patience no longer connotes disempowerment—perhaps now patience is power." 

As we continue to utilize technologies, systems and processes in the new millenium, we need to incorporate the practice of deceleration, or this ‘immersive attention’.  It could be as Professor Roberts instructs, sitting for three hours in front of a piece of art.  Or it could be sitting on a grassy hill somewhere in your neighbourhood watching the leaves fall, maybe listening to the waves hit the shore, taking up a meditative practice, yoga.

One thing I have learned, and am continuing to learn, and I applaud Professor Roberts for stepping out of the norm and pushing this realization to the forefront of learning, is we do need to stop…and not simply smell the roses, but look at the soft flesh of it’s pedals, how the arch of its stem follows the sun, how the stigmas draw in the morning dew and the filament can hold a bumblebee.

What will you do today…to pause and take in the wonder and beauty around you?

Chapter One - Living Grief: The Profound Experience of Ongoing Loss

Just on the other side of 18 years old I began working for what was then Metropolitan Labs as a laboratory assistant. My role was in the patient service centers in community and I would go to group homes, long term care facilities, private hospitals, hospices and individual homes to do blood draws or sample pick ups. I had spent almost 15 years working in the health care sector.

My boss happened to be Dr Don Rix and he was well known for his strength in community-focused care.  It rubbed off on those of us who were fortunate enough to have worked with him.

Here I was on the giving end of health care, community care for over a dozen years. I could never have anticipated how that role would soon reverse and I could never have anticipated coining Living Grief; the profound experience of ongoing loss.

I had just turned 30 and was having my third child.  I had two boys and was fingers crossed hoping for a girl.  On August 3rd 2000 Sophia was born. Within a few short hours, I was sitting in the back of an ambulance staring at my precious little girl with the fragility of life hanging in the air.

It became very clear very quickly that Sophia had a complex health issue.  We were marshaled into NICU, neonatal ICU and I found my place amongst the isolates and incubators and perched myself next to Sophia’s.

On day three, I managed to get home at midnight to shower and get some rest and see the boys before I headed back to the hospital to be with Sophia.  Before dawn the phone rang and one of the nurses, Jomarie, whom I had met a day earlier, quietly asked me to come back to the hospital right away.

Jomarie’s voice was soft and gentle but I recognized the urgency in her words; “Sophia is having some issues, we have had to ‘bag her’ over night several times and I think it would be good for you to come in”.  I read between the lines despite not knowing exactly what ‘bag’ meant.  I hung up the phone and sat on the side of the bed and my body for the first time since Sophia was born wept uncontrollably.

When a parent of a child with a life limiting illness uses the word ‘pain’ to describe how they feel, it literally is pain.  My chest hurt, I ached for the little girl struggling forty minutes away, my stomach was in knots; I hadn’t eaten since she was born.  I looked down through my fingers that covered my face and saw my legs swollen from standing postnatal, next to Sophia’s isolette for the last 72 hours.

Sophia lay in an isolette alone and I now sit here on the edge of my bed feeling utterly, desperately alone, isolated.  It was my first experience understanding grief.  When you grieve you are alone, isolated within your own self, your own pain, your own heart, mind.  No one else, even if they are going or have gone through their own grief, can feel what you feel.  It is one of the most personal and alone experiences to endure. Looking back this was probably one of the first moments that I thought my daughter was going to die. I was experiencing anticipatory grief.

Back at the hospital, scrubbing for the mandatory times two, two minutes at the sinks felt like the longest four minutes of my life.  I could see the top of Sophia’s isolette from where I was standing.  I quickly dried my hands, gowned up and went to her side.  The ‘bag’ that I have now become accustomed to seeing, was a little tiny mask attached to a tube that was then attached to, literally, a bag.  It is used when someone stops breathing and mimics your lungs.  My only experience of it prior was seeing it on a television show like ER. 

It is a life saving device…and it sat looming just above Sophia’s head in her isolette poised, ready.

I looked at Jomarie and Jomarie’s eyes were just watering up as she saw mine, and I looked over towards Sophia and it was a horrific sight. She was looking blue, she wasn’t moving, her arms were limp; you could see her respirations. You could see every time she took a breath her lungs would suck into her chest and it wasn’t a good sight. 

The doctors came by and didn’t know what was going on.  They sent her for CT scans and they still had no idea. 

It was one of those moments that could have gone either way. 

I was not an overly emotional person and always kept my emotions in check and have always been very reserved about my feelings and what’s really going on inside of me. Even from a physical standpoint. I certainly was never very demonstrative.  I always had an area around me that was my space and visibly never let people get into that space. But at that moment when Jomarie put her arm around me, that was the changing point for me and I just broke down and cried right there in the special care nursery.  Normally, I would be so worried about what people were thinking but in this moment I didn’t really care.

The hardest thing that day was not being able to hold my child in my arms.  Because of the risk to her life, her fragility, Jomarie had to tell me I couldn’t remove her from the isolate and could only touch her through the armholes.  Here I was a mother, thinking I was going to loose my child and I couldn’t hold her, pick her up.

Jomarie stepped aside to let me reach in through the armholes to stroke Sophia’s back.  She whispered in my ear that if I were to place my hands on Sophia’s head and bum, it would mimic her being in my womb and be a sense of comfort to her.  I placed my left hand on Sophia head, feeling her soft dark curls wet from perspiration beading on her forehead as she struggled to breathe on her own, and then placed my other hand on Sophia’s bum, wrapping her entirely in my hands. 

I closed my eyes, took deep breaths and just tried to sense my daughter.  I rested my head on the warm clear plastic of the isolette and tried to project warm, living energy to move between the palms of my hands through Sophia.

I think I stayed until about one o’clock in the morning.  Sixteen hours I sat there on a stool with my hands through the little holes and just touched my baby.  I had one hand on her head and one hand on her bum and I just sat there and stroked her for hours and hours.  Even when they closed down the nursery for shift change, I did not leave. I stayed the entire time. I didn’t want her to die alone.

Living Grief: The Profound Experience of Ongoing Loss

Every August I write a blog, a post, share one of the most intimate and vulnerable moments of my life; the story of my daughter, Sophia, who was born with a rare genetic abnormality that has encompassed all her major organs and systems.  For the past thirteen years I have never been able to put a name to it.  

Some would call it ‘anticipatory grief’, some ‘bereavement’.  Lately, there has been a trend to use the label ‘post traumatic stress disorder’.  Now while I believe in all these terms for various stages in one’s life, or experience, I have been struggling with finding a term that clearly identifies the emotions and experience of a parent when their child is diagnosed with a progressive chronic medical condition or illness.

When my father passed away two and a half years ago, I experienced true grief and bereavement.  While he was palliative the last week, I experienced anticipatory grief.

Having a child born with a life limiting illness and having just passed a thirteen year milestone, I feel none of those terms really identifies our journey.

Once I pulled myself out from the covers after my father died, I began to think deeply about my experiences with Sophia and some of the parallels.  My father passing unwittingly threw me into a place of deep thought and deep contemplation, emotion.

Since Sophia has been born I have been experiencing grief, however, not in the traditional sense.  After my father died I began to coin a phrase to better identify how I was feeling; Living Grief.  

Living Grief is the profound experience of ongoing loss.  And when I think of the past thirteen years with Sophia, the phrase allows me to share with clarity, my experience, our experience.

Consider this the beginning of a series of blog posts, and my story of Living Grief: The Profound Experience of Ongoing Loss and the opportunity we have had to really explore compassion.