Like most mothers, as you prepare and expect to bring a healthy, typical child into the world, you are dreaming of the possibilities of the future. Being a parent leader in the disability community was the furthest thing from my mind. I would have been perfectly happy, living my anonymous life, working in my chosen profession, and experiencing the challenges and rewards of raising children.

But for those whose child(ren) is born with a disability, the path we thought we were on quickly changes and we must learn to navigate our new reality, adjust to the needs of that child, and factor in how that works for the whole family.

Both of my children, Ethan (21) and Gavin (18), have a rare recessive genetic condition called Usher syndrome. They both have type 1, which means they were born with profound sensorineural hearing loss with no residual hearing, have retinitis pigmentosa (causing tunnel vision and eventual blindness), and vestibular dysfunction. I did not know what any of this meant, what their future would look like, or even how to manage my grief and anger. Eventually I realized I had to process my feelings and compartmentalize them so I could research, with the help of my husband, and plan how to help my children.

I have written about our journey as a family regarding advocacy and building relationships (see list of resources). I have written about working with my husband, my children, the community, support organizations, and professionals. I wholeheartedly agree with, 'it takes a village,' and I couldn't have done it without the amazing people working with our family. But, it took years of counselling/therapy (whatever you want to call it) to reflect on my contributions or to give myself a pat on the back. Recently, as I became an empty nester with both of my sons in college, I started to look back and contemplate my life; to what I have gained, what I gave up, and what I learned about myself. When I could finally say to myself that I did everything I could with what I knew at the time, and not play Monday morning quarterback, I could really begin thinking about

the Parent Leader role and not be reluctant to call myself a leader. Instead, I could see it as doing what I could to support my children and help others along the way. Now, I have fully embraced the role.

My journey started in the early 2000's when the internet or social media wasn't what it is today. At first, having two children with a genetic disorder that involves multiple sensory losses did not allow for much time to think about anything other than finding the appropriate professionals and then attending the therapy and follow-up appointments that were necessary. I was just trying to get through each day; doing what was essential to help my children develop and thrive. It was my goal to help them build their confidence, find their inner strength, and develop the fortitude to work hard to succeed and achieve their dreams. With my husband's help, we eventually found the resources and professionals we needed. I have been fortunate to have worked with incredible professionals along the way, though I have had my share of frustrations within the health and education systems. It was my hope, with sharing my experience in trying to meet the physical, educational, and social-emotional needs of my children, I could help newly diagnosed families by sharing what was helpful to our family and help them avoid some of the frustrations. Everyday Heroes Kids in Canada, and eventually across North America, is trying to do just that through a free platform that connects families to pediatric professionals, organizations, and resources.

LEADING BY EXAMPLE: Gavin at 2 (top left) and Ethan at 4 years old in 2006; (Opposite page) Gavin, left, and Ethan Morrobel; "Being a Parent Leader is about creating the opportunities to benefit our own children and helping other families; even making it a little easier for families to find resources when they need them."

Parent Groups were my first resource. While attending these, I was focused on opportunities for my children to socialize with other children like them, and for my husband and I to have the opportunity to be around other parents who were on a similar path. Meeting others who have a shared journey is a powerful and vital resource. We first joined to hear stories, and then later began to share ours. Eventually, I started to look for groups that included