​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…

​My stomach churns with worry, my mind races with uncertainty, my heart beats deep with anticipatory loss.  We are in hospice, my beautiful daughter finding peace in a still unknown and unfinished journey…
 
C.S. Lewis in his A Grief Observed reveals that “No one ever told me that grief was so much like fear.  I am not afraid, but the sensation is like being afraid.  The same fluttering in the stomach, the same restlessness, the yawning.  I keep swallowing.”
 
I have been living in grief for so long, I naively thought I would be prepared for being with dying.  But I’m not.  And I am pulling on every resource I have to be present, to bear witness and remain an advocate for my daughter.
 
I’m raw, vulnerable, tender in spots I never felt before; collapsing into sobs that rack my body hours later.  I have foregone the makeup and any futile attempts to normalize what suffering looks like.  I can no longer hide my tear filled eyes or wipe the sadness from my face amid the deep deep sense of helplessness that has washed over me.
 
Roshi Joan Halifax writes, “The ultimate relationship we can have is with someone who is dying. Here we are often brought to grief, whether we know it or not. Grief can seem like an unbearable experience. But for those of us who have entered the broken world of loss and sorrow, we realize that in the fractured landscape of grief we can find the pieces of our life that we ourselves have forgotten.”
 
I can only hope that on the other side of my sorrow I’m able find the pieces of my life that I have forgotten.  That I will have the strength to open my eyes, to practice humility, and heal what right now seems unbearable.

​I struggle a lot with privacy as a family caregiver.  We have nurses in our home around the clock to tend to Sophia’s medical and physical needs.  They report to a private Healthcare Agency…who then reports to our regional Nursing Support Services coordinator at Fraser Health.  Our NSS coordinator then reports to a whole other layer within our social health care system regionally and provincially.
 
We are, also, a part of a pediatric hospice and dozens of specialty clinics at our local children’s hospital.  Then there’s life skills, PT, OT…oh, and let’s toss in pharmacists while we are at it.  And don’t even get me started on the list of Sophia’s educational support workers. The list of those involved in supporting my daughter is comprehensive.
 
Some days I feel like there isn’t anyone who doesn’t know our personal business and I sometimes long for the days when I could slip into my home unnoticed, walk around in my pajamas and have the freedom to simply ‘be’.
 
But the reality is we need all these people and organizations to help support Sophia in her disease process and quality of life.  So where lies the balance?  Or can there be?  It got me thinking about the difference between privacy and confidentiality.
 
Privacy is the state or condition of being free from being observed or disturbed by other people.  Whereas confidentiality is having another’s trust or confidence; entrusted with secrets or private affairs.
 
I’d like to believe everyone that comes into our lives ensures confidentiality.  I almost take that for granted and want to know it to be true.  But I wonder if those in our lives understand the difference between confidentiality and privacy and although the nuances may seem so small, the impact on family caregivers is actually quite big.
 
We have no privacy…which means we are always being observed in our home, in our communities, during hospital or respite stays, medical appointment visits.  This naturally makes the family caregiver and the person who is being cared for feel incredibly vulnerable and protective.  So we rely on confidentiality.
 
I get really defensive about who sees our information, where is it being sent to, who has access to what.  Just because the right hand funds the left hand, shakes the right leg and extends up the left side doesn’t mean those in our circle of support shouldn’t or can’t be cognisant of information sharing and be respectful of our desire for consent 100% of the time.  This lends to developing trust.
 
We need to trust in order to feel safe.  And we know that trust requires vulnerability. For those around us to tend to our needs and to my daughter’s care, we have to feel safe in order let go of our privacy and open ourselves up to being vulnerable.  
 
So if it all comes down to trust, where does the responsibility of building trust lie?
 
I think that falls predominantly on the organizations, the agencies, the departments, the clinicians, the support workers, to firstly…understand the relationship between privacy and confidentiality and then co-create a space to build trust with family caregivers and their loved one.  And it may simply be always asking for consent.  Or, documenting and communicating what and who they’ve shared information with. 
 
On a deeper scale, it would mean sitting down with the family caregiver and loved one and asking what privacy and confidentiality means to them.  Understanding where privacy can be maintained and ensure the family care giver feels they have space where they won’t be observed and disturbed.  Same goes for the loved one.  What does privacy mean to the person being care for?
 
I know most organizations who support us have privacy and confidentiality policies.  However, I don’t feel those policies really hit close to what privacy means for family care givers or their loved one.  As an example, I went to BC Children’s Hospital and read their Privacy Policy.  It was all about informed consent and information sharing which by definition falls under Confidentiality, not Privacy.  Fraser Health Authority relies on the Freedom of Information and Protection of Privacy Act legislated here in BC.  Same thing, without getting into the legal speak, it has everything to do with information sharing but not the space for privacy.
 
Right now, the only thing we can fall back on are these Privacy and Confidentiality policies governed Provincially.
 
This isn’t a criticism more of a ‘huh’ question mark.  With more and more families caring for loved ones at home, there needs to be a specific focus on what true privacy means for families and how to make them feel safe amid the vulnerability their disease process entails.
 
And I believe that begins with organizations and agencies sitting down with the family caregivers and their loves ones, to determine just what the looks and feels like…
 
For me, it is not just about being informed of where and what information is being shared and respecting my desire for privacy amid all the eyeballs in our home and life.  Privacy, for me, is just as much about the space in which we live and occupy based on my daughter’s needs at any given moment.

​There are days, moments when I think life is normal.  I go to work, I meet up with friends, maybe pick up groceries, grab a coffee, get lost in a book or maybe a show on Netflix.  Sometimes those moments can last for days, maybe even weeks.  Until suddenly, but not unexpectedly, the reality of life grabs me by the shoulders and thrusts me up against the wall yelling, “Here I am!  Did you really think I wouldn’t come back for you?”  Spitting in my face, “I am not going anywhere!”
 
My daughter has gone blind. She has lost her eyesight.   I’m wiping the spit off my face.  We knew she was struggling to see, but she was also struggling to breathe.  I don’t think any of us expected her eyesight to go completely.  But it did, it has…one day her pupils just became enlarged, and unreactive.  And that was that, three weeks ago.
 
And as I was researching suffering today, I found an image online that said “Suffering is not inevitable, it is an option” and it spurred this blog.  What a bunch of bullshit.  Who the hell believes that?  Someone who obviously hasn’t watched a love one lose their way or their life.
 
Suffering is not an option in living grief.  I didn’t have choice when I sat there in BC Children’s Emergency on a Friday night being told Sophia has no eyesight.  Nor did I have a choice sixteen years ago when she was born and I was told she may only have days.  Nor when she had liver surgery, or spinal cord surgery, or she began to lose the ability to walk, or the capacity to breathe…
 
Suffering is NOT an option…it is inevitable.  And by denying the truth of our suffering, we only suffer more.  There is no shame in being vulnerable, in feeling pain or loss, or anguish.  Sharon Satlzberg wrote “acknowledging the truth of suffering is an enormous liberation for all involved”.
 
I can speculate why society denies our suffering, why my friends and family, as well intentioned, always have to fill my suffering with affirmations or regurgitated repudiation. 
 
But hear this; right now, denying my suffering serves no purpose.  I am angry…no, I am fucking furious that my daughter, with ALL the suffering she has already endured, that with every loss her tiny little body has sustained…she has now also gone blind.  Are you fucking kidding me?
 
Suffering is not an option in Living Grief…it is inevitable. 

This whole back to school thing is a bit bitter sweet for me. Facebook keeps showing me posts of September pasts and I'm faced with the reality of life and loss. That while my boys have grown and aged out of high school, I've another that has and continues to slip away from what was, what could be...

So while others scramble to drop off and pick up, post their joyful beginnings, I scramble to find a moment of lucidity to squeeze in a bedside lesson. Or creatively adapt something that is supposed to be easy into, ummm yea...easy.
​
I am not sharing this out of resentment but out of a place of not wanting to dismiss those of us who's lives are 'other'. I am 'seasonally' vulnerable and along with that comes a melancholy ache that more often than I care to admit, seeps into my gut and crushes my heart.

Living Grief is the profound journey of ongoing loss; where we can neither grief nor celebrate.

Yet, our loss is palpable. We feel it wrapped around our throat choking back vulnerability we've not ever experienced before. We journey through acceptance, make friends with physiological depression, butt up against anger, bargain with whoever or whatever holds our conscience...ultimately, finding the sweet spot of denial where we can see and be what 'is' and live in the joy of where we are at on our journey with our loved one. 

My gorgeous daughter, Sophia, turns 16 today...16 years more than we expected to have her, 15 years later with a palliative designation. 

This day comes with a myriad of emotions...from joy and celebration, to deep sorrow and grief.  I write countless blogs around Sophia's birthdays when I become infused with a sense of melancholy that washes into me like salt from the sea.  

It's been sixteen years...and year after year, time and time again, I get what I call 'grief shamed'.  How I grieve gets judged on a regular basis.

"Why don't you just love her for today?", "Everyone dies at some point", "She was given to you for a reason", "She's looks good, Bev!"...and my all time fav, "Oh, you've had her for longer than you expected".   Even in our world of medical support, I've been judged and words like 'too sensitive' or 'over reacting' have been slapped onto my forehead as Sophia's mother and family care giver.  FUCK YOU!  

How dare anyone judge or shame someone who is grieving or in living grief.  Even today, I will be met with comments like "You never thought she would make it to 16!", "Be happy, find the joy in the day", "Be grateful you still have her".  Seriously?  Living Grief isn't about not being grateful, not finding and feeling joy.

Brene Brown believes "Shame needs three things to grow exponentially in our lives; secrecy, silence and judgment."  In my experience, very few people can discuss living grief or this journey of being a mom of a child with a life threatening, life limiting condition.  Quite often, I am met with silence or one of the above well-meaning but incredibly naive and insensitive quotes pushes me into silence. 

It isn't necessarily a secret that Sophia or even my grief exists. But more often than not, we and our living grief exist in isolation in our community.  When you have someone in your life who is dependent on oxygen, or has physical and/or medical needs and limitations, your world becomes smaller.  The opportunities to go out into community become less and less.  We live on a farm so our isolation is exacerbated, our world even that much smaller.  We depend on people coming to us.

Secrecy, silence and judgment...

Caleb Wilde, a funeral director, wrote about how he, himself, grief shames and grief measures.  But he realized..."the problem with grief shaming and grief measuring is this: there isn't objectivity.  Grief is proportional to love and intimacy.  The more you love someone and the closer you are to them, the more you grieve.  And telling someone that their grief is misguided.. is wrong."

So what is the antithesis to grief shaming?  "When we find the courage to share our experiences and the compassion to hear others tell their stories, we force shame out of hiding and end the silence."

It is about creating safe space to share, it is about being open with our vulnerability, it is about meeting those like me, living grief, where we are at...just meet us where we are at, no shame, no judgment,creating a vast field of compassion...

Today, I will be swallowed up in denial...and will let joy breathe for me, filling up my lungs until I can cry no more and the melancholy rocks my broken heart to sleep. 

Happy Sweet Sixteen, Living Grief...