Brave Warriors, Courageous Parents

It’s Thanksgiving week, and I have much to be thankful for.  I have found that since I started writing this blog, that I have been put into contact with lots of amazing people, who help both sick kids and their parents. One of those people is Blyth Lord, founder of Courageous Parents Network.

Courageous Parents Network is dedicated to supporting parents of children with serious or life-limiting illness.  It was started when Blyth’s child was diagnosed with  a genetic disease that is very rare and always fatal.  Her husband is an identical twin and his twin brother’s child had the same disease.  The cousins were diagnosed a few months apart and died a few months apart.  Yet, the families got through it together, supporting and understanding what the other family was feeling and encountering.  There was strength in their solidarity.  Blyth  wanted to bring that solidarity to other families, so she started the Courageous Parents Network, a series of blogs and videos that deal with different topics from diagnosis, to communication, to partnering with doctors, and self-care.

Recently, Courageous Parents Network had a Story Corps podcast event.  They had asked five different families to reflect on living with a sick child, some of whom have passed away.  They then edited the thirty or forty minute interviews  down to five or six minutes each and compiled them, so that we could listen to them together in small booths.  Some of them were interviews with parents, and some were interviews with siblings of sick kids.  All of them were raw and powerful.  These are shadows in the conversations of our lives.  These are the unspeakable things that no one wants to talk about, no one wants to think about.  And yet, these families are living them, every day.

Blyth had asked me if they could include the Story Corps interview that Wendy and I had done this past summer, and to be honest, I had to think about it.  Wendy, though chronically ill, is not terminally ill. I wasn’t sure that we would be a good fit.  Blyth assured me, however, that though the circumstances are different that the core feelings are the same, that of worry and helplessness, of finding joy in small moments, and discovering our own strength as a person and a parent.  So I agreed.

The night was beautifully laid out, with a modest dinner of sandwiches, salad and cookies.  There was an introduction given by Blyth and by a  parent who had lost a child to cancer and had also done a Story Corps interview with her husband about her daughter’s last year of life.

I have mentioned before that people have a ripple effect in their lives, and it turns out the the parent speaker and I had never met but had contact over the internet and by phone.  Her child had suffered from the same infection as Wendy and though her daughter fully recovered from that infection, many years later she was diagnosed with cancer and passed away.

However, the mother still followed Wendy on her CarePage.

In the listening booth, filled with balloons and transparent pictures, we listened to the stories of each other, and of other parents.  Tears were shed, hugs were given, and I’m not sure that I will ever see those people again but we did have this moment where we understood each other as parents.  We were a community for a moment in time.

All of the podcasts can be accessed on the CPN website, under Podcasts..  They are incredible.  Take some time to listen when you can.

This work, giving direction to parents who have seriously ill kids, is both challenging and meaningful. It is hard to talk about palliative care and hospice all the time.  It’s hard to meet people at their most vulnerable states.  But imagine if Courageous Parents Network wasn’t there, the loneliness and isolation would only compound itself.  It’s hard work but it’s good work, and I’m happy to be a witness to it, and to help it when I can.

It’s a funny thing, once you put your flag in the sand and say “I stand for making room in this world for sick kids and their families,” how many people enter your life and how many connections you make.  In this week of Thanksgiving, I am thankful for the connections, thankful for the hard work, thankful for the relationships I’ve made along the way, thankful for this blog to convey the journey, thankful for the people who read it and encourage me to continue.

This blog was a New Year’s resolution, to write one post a week. It turns out that a post a week is ambitious, and I can’t believe that I’ve almost been doing this for a year.  I’ll have to decide how I want to continue and move forward.

To be continued.

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Snow Day in the Hospital

This unexpected snowy day got me to thinking about a day when Wendy was in the hospital, many years ago.  She had been there for months, literally, and one day in late December there was a heavy snowfall.

Looking from the window of the 17th floor of the Ellison Building at Massachusetts General Hospital, the whole city of Boston looked so clean and amazing.  We were on the river side, and the Longfellow bridge looked like it was topped in cool whip.  Being a child from Vermont, Wendy desperately wanted to go outside, but it just wasn’t a possibility.  She was in heart failure, and we were measuring every ounce of liquid that was going into her.  There was no way we could account for how much snow she would eat, and how much liquid that would be equivalent to.

Wendy was so disappointed, but there wasn’t much we could do as parents.

However, the staff came up with a plan.

The PCA (Patient Care Assistant) went down and got a bowl full of snow.  Wendy’s nurse measured it out, put it on a scale, and slowly let it melt.  They then poured it in a graduated cylinder.  After they figured out how much snow by weight equaled how much water, the PCA went down to the quad again and got Wendy some new, fresh snow.  Can you imagine, a child who has only seen the inside of a  hospital room for months, who only knew the sounds of the machines and the buzzers ,the television, the woosh of the forced air, who only knew the sterility of the meal trays, the plastic covered hospital bed, the stethoscope hanging over her head, getting a bowl of snow?

It is those moments of compassion and spontaneity that we are grateful for, now, looking back.  It’s easy to forget the monotony of the endless days that stretched together during her recovery. But that one moment of brightness, that is one moment that we will never forget. They sustained us then, and they sustain us now.

I was recently reminded of the story when I heard of a similar one on NPR.  The Show is Called “On Being” and it airs on Sunday morning.  One morning in January, I was listening to a man who had tragically lost three limbs through an electrocution accident, and the one thing that brought him comfort in the burn unit was when one of his nurses brought him in a snowball, connecting him back to the real world in profound ways.  I highly recommend taking the time to watch his TED talk which I’ve posted here.   Somewhere in the middle, he tells the story of the snowball.   He now works a as the executive director of the Zen Hospice Project in San Francisco, where the idea is that life still happens even when death looms and it is a combination of compassion and dignity that makes a medical caregiver a healer.

Whether it is called compassion, palliative care, or hospice, the world needs more healing moments.

Photo:  Wendy, the year after the long hospitalization, finally making a big snowman.