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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

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

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