NOVEMBER 30, 2006 – FROM PARENT TO ADVOCATE: LONG DAYS’ JOURNEY:? DEBORAH DOKKEN.? After the loss of two infants and the premature birth of her son Jeremy, Deborah Dokken became involved in programs enhancing family participation in health care. She is co-investigator for The Initiative for Pediatric Palliative Care, a national education and quality improvement project.? She currently serves on the FDA’s Pediatric Advisory Committee, and is a longtime member of the Ethics Forum at Children’s National Medical Center.? She is the recipient of the Pediatric Nursing’s 2003 Humanitarian and 1998 Excellence in Writing Awards.?

Deborah Dokken:? I didn’t one day after Jeremy was home and was relatively healthy, I didn’t wake up and say I think I’ll become an advocate.? It has been more fits and starts and happenstance, some thinking about it, but I basically started with just realizing that it was a huge life-changing experience to have had two children who were born and did not survive and another child who was still medically fragile and this realization that I’m not the same person and it didn’t feel right just to go back to what I was doing before but I wasn’t sure what it was that I did want to do.

Deborah Dokken:? There’s a readiness that I don’t know how as parents we know it, but it felt at the time that the physician asked me to do this, it felt not at all like a burden.? It felt like a very helpful and hopeful thing for me because what I said to myself is maybe I will be able to do something that can help other parents who are going through a similar experience and somehow make sense out of what happened to us by being able to help other families.

Deborah Dokken:? I think what I would say to other bereaved parents is that each one of us knows ourselves when we’re ready to become involved in some way and to sort of take our experience outward and when you are ready, look for something that fits for you as a person.? Parents have made videos.? Parents have written books.? Parents organize groups or lead support groups, but it’s important that it’s something that fits for you as an individual and helps you make meaning out of your own experience.


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