Re: I just don't know how you do it / Jane

[Guest guest]

In a message dated /31/2002 8:52:30 US Eastern Standard Time,

slvrmoon2@... writes:

> >>> I am ... amazed by all your stories. Living with such an illness is a

> very difficult thing. .. You who have children with these health problems

> ... I just don't know how you do it. You all ought to give yourself a lot

> of credit just to get through a day. Thanks for all your help. Jane <<<

Jane,

I agree with your sentiment re: parents of children and adolescents who are

living with this disease. as a Pediatric RN I spent 10+ years working with

parents of chronically ill children. I was swept up by the power by which

families found the strength to live full and productive lives. There is a

shift in perspective and outlook; there is a redefining of their roles and

relationship within the culture of their peers. Families living with chronic

illness discover that setting goals, establishing routines, and developing

communication skills promotes and increased sense of self worth among both

the child and the parents and siblings. I spent over a decade volunteering at

the Center for Attitudinal Healing in Austin, Texas, where I worked with

children and adolescents with catastrophic illness. From leading family

groups in musical activities to facilitating the kids small group interactive

discussions to working one on one with a teenager as I walked with him down

his own inner soul journey, these kids leave me in awe. We are all teachers

and students, leaders and followers. Jerry Japowlski (sp?) who wrote, " Love

is Letting Go of Fear " was one of the founders of the Center for Attitudinal

healing, originally first established in California. He taught the families

the healing power of love. The other master that families with chronic

illness are often taught lessons from is the course of miracles. And, if

some families, parents or children, have not been exposed to these there

seems to be an inherent understanding that kids with catastrophic diseases

develop.

What gets me through the day is when you and everyone else shows up, too.

Working with other people. Helping a stranger. I can't imagine what I would

be doing if I didn't have all of the people that I have met since I got

diagnosed.

Thank you all for being here, showing up, and coming back. In a world where

the only thing we can depend on is inconsistency, I need to know that when I

go to the computer and log on, somebody will be here.

The other thing that keeps me going is watching the transition that people go

through after they are newly diagnosed. So often they arrive to the website,

or I meet them in person at the hospital, and they are so scared, so angry,

and confused. It makes it all worth it when I turn around and see them

helping another newcomer.

What keeps you going on?

Karyn , RN

Founder / Executive Director

http://www.pancassociation.org

1- / KarynWms@...

PAI Home Office: Indianapolis, Indiana, USA