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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.

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


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 



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.

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