Founded in 2001, the Children’s Hospice and Palliative Care Coalition is what is called a social movement.
This means it is led by children’s hospitals, hospices, home health and grassroots agencies, and individuals to improve care for children with life-threatening conditions and their families.
Melissa is on the board of directors and serves on all comittees.
For more information about the Children's Hospice and Palliative Care Coalition >>> Click here
To read more about Melissa's involvement, here is her personal account:
Thursday, May 31, 2007
Children's Hospice and Then Some
Current mood: grateful
Got up early today, though it is Bruce's day to drive Michael to school (we take turns unless one or both of us is working). I have to get my car from the BMW dealer this morning so we switched days. Anyway, Mike's got a fever and has gone back to bed. I've already had my cup of tea so, there will be no more sleeping for me.
I've been answering some of my friend's questions and one thing has come up a lot. People want to know about the Children's Hospice and how/why I got involved.
It's kind of a long story. I have, since I was a tiny girl, dealt with death..or death has dealt with me a lot. I lost my best friend, when we were four. I lost my Dad when I was eleven. My first dog when I was 12. My great Aunt Mary when I was thirteen. Members of the "LIttle House" crew..etc. The list of loss..my personal one goes on and on.
Now you must add in my belief and desire to be of service. To help other people. It goes beyond simply giving back. Helping people fills a part of my heart. That has been a part of me since I was a child. In my eyes, I have always felt that children needed help most of all. Even when I was just a child myself.
I think that everyone has their thing that they do best. Some people can help take care of the elderly. some are moved to work with animals..you name it. So, here I am, this creature with an ability to deal with death and end of life issues and a strong connection and desire to help children. On a cosmic/spiritual level, that is why I do Children's hospice work.
It's really amazing to me. when I look back at my life how, repeatedly, my path has crossed with the path of a chronically or terminally ill child. I have this thing, whenever I visit someone in a hospital or if I am shooting in a hospital I connect with the head of PR there to see if there are any patients who might want to visit. Nine times out of ten...and this has gone on for decades, I end up on a pediatric oncology floor.
Several years ago, when I was the president of SAG I heard about a boy named Dustin Meraz. He was at Children's Hospital in LA and was dying. He wanted to be an actor. I was asked to give him a SAG card. Well, we got him his honorary card and we had a ceremony for him at CHLA. I took some special friends with me to welcome Dusty into our union. It was one of the best days of my presidency...maybe one of the most important of my life. Dusty died two weeks later.I wear his words on my wrist "Today is a gift, have fun"....he's right, you know.
I was asked back to CHLA for their annual Xmas party for the kids on Dusty's unit. Again I came back with some special friends for the kids to meet. That day changed the path of my life forever. That was the day that I was hit by the blonde tornado, Lori Butterworth, co-founder of the Children's Hospice Coalition. She asked for my help.
I had lunch with she and her co-founder Devon Dabbs. I listened to their stories in awe and horror and so moved by what they told me. I am crying right now as I think about it. So many statistics and case numbers and long named diseases but underneath all of that there is a child. A child who needs help. A child who may know that he/she is dying.
That child has a family. That family needs help too.The costs alone are staggering and with so many people living in or on the verge of poverty in this country. Hell. the costs are staggering for anyone. I, myself have a million dollar baby...that was what it cost to keep Michael alive for his first year...thank heaven for the SAG health plan!
But imagine what it must be like to care for a dying child with little or no support. These people need nurses,social workers, spiritual advisors, grief councelors, volunteers to go do laundry...anything! Everything!
92% of children who die in this country die in uncontrolled pain! 92%!!!
Disgusting, frightening and wrong. Just plain wrong.
I aim to change that one child, one case at a time until that particular statistic goes down. I am passionate and committed and the truly amazing part is the gifts this work gives to me. The children I have met and their families stir my soul and reshape my vision of the world. They are each extraordinary in their own way and it has been my honor to know them.
So, there you have it...my long rambling dissertation on Children's Hospice and why I do this work. If you feel the least bit inspired go to www.childrenshospice.org and learn more.
Now I must go...my million dollar baby has a fever and needs me to give him advil and juice and hold him. He's almost as tall as me now but when he doesn't feel well, he likes me to hold him. I am so grateful that I can....hold him.