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Letting Your Child Die...

I read an interesting article this morning on Films for Action by Louis Profeta, M.D. titled ‘How We Used to Die; How We Die Now’. In the article, Dr. Profeta, an emergency physician, discusses how we used to die in and of old age versus ‘our death-defying, death-dealing military industrial medicopharmaceuticalized culture’ of today.  And it struck a cord.

We don’t have this conversation when it comes to children dying regardless of their diagnosis, prognosis, trajectory (if they are lucky enough to have one).  Even the title for this blog, I wasn’t sure if I should title it ‘how a child dies’, ‘when a child dies’ or ‘should a child die’.  Letting your child die…it’s a controversial and incredibly difficult conversation to have.

As the mother of a child with a life limiting, life threatening disease, who for the better part of 15 years, has been suffering from a rare, un-researched, multi system disorder I feel it is crucial to have this conversation.  But few can listen.

In his article, Dr. Profeta paints a beautiful picture of an elderly woman propped up by pillows, in her own home…slipping beautifully and quietly into death ‘before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us…’

This is the same struggle I have and continue to have being responsible for this soul I gave birth to fifteen years ago amid alarms, ambulances, incubators, equipment.  The struggle remains and I am constantly asking myself ‘am I doing enough?’ which then leads into…’when is enough, enough?’…even for a child.  And what does ‘doing’ something look like and feel like anyway?

In the world of paediatric hospice care our family is surrounded by many many families on a similar journey as us; a child with a life threatening, life limiting diagnosis.  My Facebook feed is full of these families ‘doing’ for their children…be it surgical procedures, new med trials, using invasive equipment, the list goes on and on.  And I, by no means, am here to judge or criticize any one else’s choices.  Our journeys are our own, they are deeply personal and each child is inherently different from the next even if they are diagnosed with the same rare disease.

Dr. Profeta shares that his article ‘is meant to be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.’

The same could be said for families of children like my daughter…Sophia doesn’t have anyone researching her particular genetic disorder.  And even with some of the issues she has and presents as, she is unlike most. While the physicians in our world remain baffled and constantly perplexed, I have to ask myself what do I believe in; a system that makes us grapple with endless, un-eventualized hope for technological advancement and shames us for not wanting to whore our time and resources to no end or one that promotes comfort care, supports acceptance and teaches being present like Roshi Joan Halifax’s teachings on ‘being with dying’?

It is and always will be a mother’s desire to ‘do’ for their child…to want to do everything possible to alleviate their child’s suffering.  And it just isn’t natural to consider the hard truth that you will outlive your child.  Why would we want to sit with that truth? It goes against every part of being a mother.

But that is the truth for many of us, it is for me…and as difficult as it may be, we need to begin discussing what ‘doing something’ looks and feels like for families who are gifted with caring for a child with a life limiting, life threatening illness.  If you or your child decides that trach and vent isn’t the big panacea, or that particular surgery, or medication…that intervention isn’t something you want to ‘do’, how do you sit with that?

We need to start re-thinking what ‘do something’ not only looks like but feels. That it may not include equipment or invasive surgeries, lengthy procedures that may add or prolong our child’s suffering. 

Maybe it is about providing your child with comfort care.  Being able to take your child home to be with family.  Letting them eat mango cheesecake morning, noon and night.  Putting twinkly lights all over their ceiling.  Giving them medications to help alleviate breathlessness, putting a fan on in their room to do the same.  Giving them a good long soak in a hot bath when their bones and muscles ache from increased edema…stopping their feed when their gut can no longer process food.

And that sometimes…doing something is letting your child die. Die in your arms, surrounded by those twinkly lights, the remnants of mango cheesecake and the din of Taylor Swift in the background.

F@#$ Self Care; Living Grief’s Nemesis

I was having coffee with a dear friend and colleague this morning when the question came up around self care and what am I doing for my own self care.  And let me tell you, it was a trigger…boy, was it a trigger.  I am sorry, dear friend!

In living grief, especially as a parent/family care giver you are, hopefully, surrounded by many many people who have the right intention of making sure you are taking care of yourself.  You know the saying, “put the oxygen mask on yourself first”.  Bless them!

Self care has become a necessary focus as family care givers burn out on these profound journeys of ongoing loss.  We are looking after our family members more and more at home and for longer periods of time with more medical complexity than ever before.

I have been caring for my daughter and her life limiting, life threatening condition now for over 15 years.  It has always been a challenge to be conscious of my own well being; physically, emotionally, mentally, spiritually as her journey and condition deepens.  But now, traversing into what is deemed ‘palliative’ care or ‘comfort’ care due to a significant and somewhat sudden shift in her condition, it almost feels impossible.

Thus my whole ‘fuck self care’ moment this morning.  I know everyone is well intentioned.  I get that ensuring I am ‘ok’ and looked after is important.  The reality is, I am NOT ok. I know that my metabolic system is screwed up. That I am over weight, that I lack a good nights sleep.  That I can barely get food down without incurring such excruciating pain from reflux. That I walk around with the fear of loss etched on my face, grief looming over my shoulders.  

This is the reality of living grief…

Try as I might to eat healthy, keep hydrated, meditate in the bath each night, get outside in my garden, seek counselling or a reprieve with friends, it is never going to be enough to abate the churning pain and devastation of watching your child die.

It is never going to be enough…and where I am at today, you can’t convince me otherwise. But asking me over and over again, be it a health care worker, a counsellor, a friend, a family member, clergy about my ‘self care’…just adds to the stress and can be quite overwhelming. It just doesn’t help. 

Great, one more person I have to answer to, or one more thing to add to my already overwhelming, exhausting, stacked plate. Fuck self care

At the same time, I am not saying self care isn’t important.  It is! But it has to be on your terms in a way or form that not only you can manage but that resonates with you…on the inside, not the outside.

Self care in living grief is so much more than what you eat, how much you exercise, how long and how often you meditate.  

My dear friend this morning, who’s got a decade on me, understands that self care is only dangerous when you close yourself off, when you shut down, push back, tuck yourself away from the overwhelm.

True self care…if we are going to keep calling it that, is when you allow yourself to remain open, porous, vulnerable.  It is in remaining open that you will be fed, you will be walked, you will be nurtured, hydrated, tended to emotionally, physically, mentally, spiritually.  That is true self care in living grief.

“The strongest love is the love that can demonstrate its fragility”, Paul Coehlo

It isn’t easy to stay porous, to be vulnerable, show fragility.  I really didn’t think I could become any more vulnerable until a few weeks ago when my daughter didn’t wake up for several days.  I didn’t think it could get worse, that I could possibly become more fragile as I sat vigilant next to her bed in our paediatric hospice.  But I did…my vulnerability deepened and my needs for ‘self care’ extended beyond the physical. I wept spiritually, my heart and soul drowned in tears of pain.  It was an epiphany.

“We cultivate love when we allow our most vulnerable and powerful selves to be deeply seen and known, and when we honor the spiritual connection that grows from that offering with trust, respect, kindness and affection.” Brene Brown

In that moment, it was my long time friend, Angela, chatting with me in the hospice library; it was my dear friend, Tracy, texting me her own crazy life; my other friends inviting me out for drinks, tea, coffee, walks.  It was the staff and volunteers at Canuck Place Children’s Hospice who with grace, and kindness met me at my place of fragility, walked with me through the deepening vulnerability of living grief that truly supports the degree of self care such a journey requires.

I am lucky to have my dear friend, her wise words, her conditional love for my well being.  And for the select few beautiful, generous, kind souls who I’ve become spiritually connected with.  Because even if I want to fuck self care, they don’t let me…and know it runs deeper.

Palliative is not a state of being...

Lately, I feel like the grim reaper with death and dying being a prominent feature of many of my conversations online and off. When you are caring for someone who is sick or has a life limiting, life threatening illness death definitely pokes its head in your window. And being part of a palliative hospice death basically sits on your stoop waiting to come in.

What I am learning is that death is not linear. It doesn’t start at one spot and end at another. I guess some people would argue it begins at birth and ends at our last breathe. But when you have a life limiting illness or a diagnosis that is life threatening, like Duchennes Muscular Dystropy, AIDS, certain stages of cancer, or like in my daughter’s case, a rare complex disease, the process of ‘dying’ doesn’t seem to follow any one course. I’d even argue there is no discernible beginning and end.

I bring this up because the last few weeks I have been traversing a slippery slope with Sophia. Her disease process, as complex as it is, seems to have become even more complex. Sophia is suffering from pain, severe pain and while the amazing professionals in our life bind their knowledge and experiences, sophia and I have to traverse lightly through her suffering on a different level. As a mom, I grapple with questions like, “what stage are we at?”, “where is this leading?”, thinking that those answers will ensure the best possible care and support is in place for Sophia medically and physically, spiritually.

The thing is, no one can know the answers. Sophia is in extreme pain and we have been trying a few different techniques and medications to help her. I had the expectations that if we find the right cocktail she would perk up and we would regain a sense of our live moving.

The word ‘palliative’ began its rounds at the same time we had to put Sophia on a drug called Nozinan. Both grabbed me by the ankles like a vice and I couldn’t move.

Palliative…when I hear palliative I think of end of life. I think, here we go, call everyone, death is imminent. Up until now, that has been my experience with palliative. When. Y dad was palliative, he died shortly there after.

So when the word palliative started showing up in conversations regarding Sophia I was knocked into shock. Sophia’s not palliative, she couldn’t be. Sophia still has moments where she can go swimming, or we take her out for sushi. She giggles and there are times when she still belts out those teen karaoke songs! Sophia can’t possibly 'be’ palliative!!

But one of our Advance Nurse Practitioners began to explain that those who are 'dying’, for lack of a better word, start to instinctively make their world smaller. Sophia stopped going to school a while ago, she is reluctant to leave the house, some days even her bed. She stopped eating food or wanting to eat. Sophia began to withdraw and tuck into herself physically, emotionally and probably spiritually.

Her world has indeed become small…and the only way we have been able to ebb her pain and suffering is to put her on this medication, Nozinan, and have her fall into a deep sleep. I can’t breathe.

In true mom therapeutic form, I started doing research on the word 'palliative’ and began to have open discussions on what this word meant for other people. Most were like me, the word palliative evoked strong feelings around death and dying and the sense of imminence.

The Canadian Hospice Palliative Care Association just celebrated National Hospice Palliative Care Week. CHPCA’s definition of palliative “aims to relieve suffering and improve quality of living and dying.” Wikipedia indicates palliative is a “multi disciplinary approach to specialized medical care for people with serious illnesses.” The origin of the word itself is “under cloak, covert”, “relieving or soothing the symptoms of a disease or disorder without effecting a cure.”

As I wondered aimlessly around the World Wide Web defining palliative it struck me that the word didn’t stand alone. Palliative is always complemented with the word 'care’. And when I had a heart to heart with our own hospice counsellor, she looked at me and softly said, “Bev, you’ve been providing Sophia palliative care for quite some time. Palliative is not a diagnosis, it is a model of compassionate care.”

Palliative is not a state of being…it is a model of compassionate care. In living grief I’m learning to accept that care happens to include supporting Sophia’s rest, her choice not to eat, her desire to hunker down in her room, all comfy under the covers and to use medication like Nozinan to help abate her suffering.

It isn’t easy, palliative is never easy. But our goal is to ease Sophia’s suffering on her journey..

Living Grief is like a burpee, you have to get back up...eventually

Lately, I seem to be experiencing a myriad of grief…some in its most traditional sense, others within relationships and the most surprising, in expectations.

I got the call eight weeks ago now, from my sister, that our mum had been taken to emergency and that her death was imminent. I jumped in the car without hesitation and drove the twenty minutes to the hospital.

She had passed moments before I got there. I immediately asked to see her. I hadn’t seen my mum in close to eight years…our reunion was at her bedside with barely a hint of life left in her. She looked peaceful, she looked like our grandma.

I was comforted being with my mum even in her death. I cried for her; I wished her peace, I wished her joy and I wished her resolve on her next journey full of love and light.

Being with dying definitely seems to be my theme. And I’m surrounded with a sense of grief daily.

But my Mum’s passing, in many ways, was a letting go for me. You see, she was the black sheep in our family and growing up, it went without saying we were the offspring of the black sheep at every family gathering, wedding, funeral, occasion. Looking back, it was uncomfortable, we were made to feel terribly uncomfortable. I’m not sure to this day if anyone in our extended family really understood the impact on all of us.

I turn 45 in five weeks…ugh, 45. Both my parents have passed and psychologically I, apparently, now have my ‘death age’. My dad passed at 83, my mum short of 87. So my death age could conceivably be between 83-87 years of age.

I’m half way…

Grief facilitates an opportunity to reset. I’ve recently attempted to do the WholeLife Fitness Manifesto with dai @daimanuel #WLFM and failed miserably. Dai compared resetting to a burpee…you get down and get yourself back up, over and over again. Well, shit, I hate burpees at the best of times! But I get it. It’s ok to reset, we are going to have a life full of burpees…

The past three years have been a challenge. I have gotten smacked down relentlessly and there were moments where I lay on the mat soaked in my own sweat feeling like I couldn’t possibly get up for one more burpee.

My expectations of my best friend, my relationship, my expectations of my colleagues, peers, my family and even expectations of my body all seemingly failed. We grief from unmet expectations, too. We all do. I always felt there would be a sense of disappointment with unmet expectations but I’ve since learned it’s another form of living grief.

And it’s another opportunity to reset…I’m committing to stage 2 of The WholeLife Fitness Manifesto and bringing my spouse along for the sweaty ride. It’s time for a reset and how lucky are we to still be full of life to have that privilege.

And grief, in its many forms…both literally as I’ve experienced this past few months with my mum dying, to this piece around living grief as I traverse my daughter’s arduous journey with a life limiting disease, to relationships is an opportunity to reset, restart, re learn, re commit and ultimately, to rejoice.

See you on the mat…I’ll be the one face down struggling to get back up, but I’ll get back up, you can count on that!

Hoorah…(crossfit talk)

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.

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