1. How did you find path to Ed advocacy?
One of the things that got me through the worst of our family’s experience was the vow to make things easier for other families later. It motivated me and gave me something good and optimistic to focus on when things were difficult.
2. How do you define advocacy?
Advocacy is, for me, speaking up and acting on behalf of all of those who face the same challenge, whatever that is. I feel strongly about parent advocacy and I feel we bring a special perspective and focus and urgency to the whole ED advocacy community.
3. What changes do you hope to effect through advocacy work?
I focus on making it easier and better for the next generation of parents who will face this problem.
4. Challenges/frustrations inherent in doing this work?
There are real costs to being an advocate, a self-designation that no one really invites us to take on. It costs time, energy, money, focus, free time, confidence and often our privacy. Not many people had a whole lot of those things to spare before we start. It is a mission of love, not glory!
5. Top 5 things to share with family facing a new diagnosis?
1.Cry first, then gather your most courageous parent self and get to work.
2.Be confident first in your good intentions, then in your abilities: you can learn how to do this.
3.Keep an open mind at first, but get to speed quickly: you do not have time to waste.
4.Listen to everyone but make your own decisions: not everything you hear will be correct or useful.
5.Don’t let anyone undermine your confidence that you are important in the process of getting your loved one well. No one else is more qualified.