A letter from a father, to CPN, about pediatric providers on the occasion of the Courageous Provider Award


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Originally published at:
https://courageousparentsnetwork.org/blog/?p=7841

Dear Blyth and Courageous Parents Network,

I think I understand why “courageous” has been used in naming your network. It bolsters the spirit of parents fighting these battles. But I don’t think any of us parents are courageous. We do what we do simply because we have to. There is no other choice. If we stay strong amidst darkness and despair, it’s because we have to. Others depend on us. We are driven by love, not courage, and we suffer whatever our loved ones suffer because we love.

None of would ever chose to place ourselves or our loved ones in the terrible situations in which we find ourselves. That would take real courage. Yet one group of persons has done just that and they have chosen to do this every day as their professional bread and butter. I don’t just mean palliative care doctors. I mean doctors in general, especially pediatricians, and even more, nurses and aides who spend far more time one-on-one with individual patients. These people in the trenches remain undervalued and underpaid even though they often know more about what each patient needs. Who gives them palliative care? Who wipes away their tears? Who even sees their grief?

The palliative care doctor remains a special case in courage as her profession requires daily journeys into the depths of hell with patients and family. To my secular mind, this hell is much more real than the imaginary Hell of the Christian imagination and in so many ways, much worse as it lacks any obvious transcendence or redemption. I have discovered some transcendence but only in facing up to the shared suffering which is an inescapable part of our humanity and by participating in a larger compassion which consoles and bolsters without healing. The lowest depths of this psychic hell is reserved for family members (and pediatric palliative care doctors) coping with the unspeakable, unnatural disaster of a dying child, a disaster worsened if prolonged physical and emotional suffering are present.

What kind of a doctor would volunteer to work in pediatric palliative care - the deepest depths of hell known to me? Some of the answer came with the tributes of Dr. Pat O’Malley’s three daughters at the award ceremony last night. Yet still their mother remains somewhat of a mystery even to them. Was she always a palliative care doctor, like she was a similar mom long before, or did this new career shape Pat into who she is? For me, it’s not an either/or question. Thanks to the daughters’ lovely tribute, I can now see what I suspected all along, that Pat was always who she is today. Her upbringing and her later work in ER and palliative care only shaped, enriched, and deepened who she already was. My doctor father (and measure for all human beings) was the same way. He was born a caregiver. He just needed to find the right occupation.

The Courageous Provider Award ceremony has seized me for all sorts of good reasons and occupied every waking hour since then. I am trying to process it more fully by writing this letter. And I am trying to thank you: Courageous Parents Network for recognizing Pat and for inviting us to share in the love fest. I also thank Pat’s daughters for adding so much insight and depth (see their speech below). The apples have not fallen far from the tree.

With love,

Robert


At the ceremony, Dr. O’Malley’s daughter Becca read a toast to her mother from herself and her two sisters. Shared, with permission, here.

Hi, I’m Beck, Pat’s second child of three.

First of all I just want to say thank you to the Ilene Beal Foundation for allowing us the opportunity to celebrate my mother. And thank you to the PD Pall care Team and Courageous Parents Network for dreaming this up, and getting everything and everyone together.

I am calling into the room my 2 sisters who are here already in spirit. They’re thinking of you, right now and sending love. I know because we’re timing it, so Mom, reach out and catch some of that if you can.

If Katie, my older sister were here, she would tell you, and I quote—

“There are so many things that I admire and love about mom, English words don't do her qualities and accomplishments justice. She is Sabhsaí ("SAWH-see"), a Gaelic word for someone who always works outside no matter the weather. She is tireless in her pursuit of care. She is also aiteall, (“AT-ell”) the Gaelic word for the spring, meaning a fine spell of weather between two showers of rain. She brings the light and the sun. But perhaps most importantly mom is the very essence of Tikkun Olam, the Jewish phrase for repairing the world.

My younger sister Elicia would say, and I quote--

“My mother is magic in many ways. This is certainly clear to me and my sisters, and I believe to the people who meet her as well. She seems to me often like a deep blue-green lake, whose cool, calm waters barely ripple at the turbulent weather around it. The water is not rigidly placid, though. Rather, it is receptive, and subtly shifting. My mother is at once wise, compassionate, still, patient, open, clarifying, ancient, and curious. I have no doubt that it is these qualities that enable her to do the type of work she does. Or was it the work that shaped her this way? I don't have enough perspective on this matter to comment, only curiosities of my own that I harbor. But I am so so proud and excited to know that my mother, her work and her incredible lake-like ability can be recognized through the Ilene Beal Courageous Provider Award.”

For my part, I will say that my mother is indeed full of magic, and an alchemist. She possesses the ability to transform things. I know because I have experienced the “palliative care approach” from her all my life, which at home we just call “making much of” – If someone is ill you should “make much” of them, give them every comfort, use it as an opportunity to revel in your love for them. She has made much of me in every sickness and minor injury, but especially 3 years ago during my own major, scary illness. And I have for years heard stories of her journeys through other major, scary illnesses with incredible young people and their incredible families and loved ones, many of whom are here today (thank you for being here!) It seems to me that for all of us, my mother has always found whatever opportunity there is to transform our suffering. Like a rock you might find on the beach, my mother will turn it into a healing stone in her very palm. Where there is grief and fear and pain, she wraps herself around them like a blanket. She does not erase them, does not even try. Knows that she cannot. But rather she seeks to imbue them with comfort, relief, playfulness and fun, laughter and delight, a sense of richness, love, and the highest order of attention and presence. In this way, my mother transforms suffering into something radiant, into something meaningful, into something precious. She transforms it into the very essence of life.

Thank you for being here tonight to honor our loved ones who live, and lived in this very essence of life, the families and care teams who walk the journey alongside, and my mother, the fine spell weather between the rains, the still blue-green lake, and she who transforms rocks into radiance.