Sunday, October 12, 2008

Being an advocate for your preemie

This is the first in a series of posts about being an advocate for your preemie. All parents are advocates for their children however preemie parents often have to take this role on in a larger and more active way. These posts will explore what it means to be an advocate and ways that I have found (through my own experiences and that of others) to be a good and useful advocate for your preemie.

According to the dictionary, the definition of advocate is: One that pleads in an other's behalf; an intercessor

While that is a very appropriate definition, I think that for a preemie parent the advocate definition would go something like this:

  • One that constantly tries to take care of his/her children to the best of their ability
  • One that makes sure the correct doctor visits are scheduled and pushes to find new doctors or specialists if needed
  • One that is often bombarded with new medical terms and issues and must come up to speed very quickly
  • One that keeps track of diagnosis, prescriptions, surgeries, medical history, issues, problems, etc
  • One that has to keep asking and searching for answers in order to best help their preemie
  • One that has to be at times outspoken or at times quiet in order to get the answer or help they need
  • A researcher
  • One that knows to ask questions and question the answer that he/she is given
  • One that must make sometimes life changing decisions even when they are not sure what is right
  • One that sometimes must look at new/different/alternative options for their preemie in order to get the best care possible
  • One that does not take no for an answer until all other options have been explored/questioned/exhausted
  • One that often has to argue why a decision was made or not made to family, friends and strangers
  • One that faces a constant battle that often doesn't have a clear end point
  • One who loves their children to the end of the earth and back

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