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 Success Stories

Paving the Way for Family Leaders

By Anna Cyr
Family Consultant, Maine Parent Federation

Twenty eight years ago, I gave birth to a beautiful, baby girl. As my husband and I basked in the joy of this new life, the beginning of our family, we had no idea that our lives were about to turn into a roller coaster ride of hospital stays, surgeries, intravenous infusions, and countless sleepless nights. We were told our precious daughter would probably not live to see her second birthday.

Now, looking back, when I think of the time spent actually caring for my daughter, I feel a deep sense of pride and accomplishment. The trauma I experienced had more to do with "navigating the system" and being forced to interact with people who didn’t understand our family culture. So, when I was offered the opportunity to be a Family Consultant to the Children with Special Health Needs program, I jumped at the chance to effect change for other families. Little did I know what a huge learning curve lay before me!

The genesis of my journey as a family leader came with no instruction manual, no clear cut activities with which to start. I was making it up as I went along. I discovered that my vision of my role was not shared by others. In fact, pretty much everyone I met had a different idea of what my role should be, and some people did not think I should be there at all! As I began to come in contact with other family leaders from around the country, I realized that the roles vary from state to state and agency to agency. I also began to appreciate the flexibility this gave me to figure out how I could best use my skills and strengths to be most effective.

Today, I believe it will be critical to include genuine family and youth involvement as the Affordable Care Act moves forward and families and youth must navigate new waters. This is a time of great opportunity to have a hand in creating the new health care landscape.