NOAH (National Organization Albinism/Hypo-pigmentation)

I've noticed my writing ebbs and flows with what I need in my life and how much I'm struggling. When I've needed to find my voice I have turned to this platform as a way to connect, heal, and grow. When Scotlyn was first diagnosed with Albinism, I was so lonely and lost and this became my safe place to let out all my thoughts when I didn't know where else to turn. Not long after her diagnosis, I learned about NOAH, the National Organization for people with Albinism and Hypo-pigmentation, and a new journey began. They sent me a care package with a lot of information and goodies and a parent liaison called me shortly after. It was a woman who lived an hour away who had a son with Albinism. She comforted me in knowing her son was doing all the things I feared Scottie wouldn't and we chatted as though we were friends sharing in each other's similar fears and experiences. She was able to ground me and I felt validated in my feelings knowing someone else who only lived an hour away from me had felt them too.

Fast forward two and half years later and I got another call from NOAH asking me if I would be interested in being a Canadian parent liaison. They said the same woman who had contacted me when Scottie was newly diagnosed  recommended me to take over the role of the Canadian parent liaison as the first contact for newly diagnosed families. I was so honoured, but also wondering if I was capable of adding something else to my full plate getting ready to return back to a new full time addictions counseling job, two baby girls at home, finishing up a Bereavement Doula certificate, and discovering a new passion for photography all the while trying to sell our house and manage all the rest of life's daily ups and downs.

When the call came a few months later to check in to see if I was interested in starting this volunteer adventure, I had settled into my new position at work, the girls were doing well at Dayhome, and I knew in my heart that NOAH was supposed to be a part of my journey. After all, we now had two children with Albinism and it was my parent connection through NOAH that had enabled me start to enjoy my newborn and not succumb to my fears and frustrations with comments about my white haired darling.  I finished my training and two days later I got my first call. A baby had been diagnosed a few months prior and now it was my turn to pay it forward and make the call to another Mom, who felt what I had felt less than three years earlier. I feel so grateful to be able to sit here today with a calm heart and confidence in my children and share my beautiful experiences of raising two legally blind children with Albinism. Two girls, who I know in my heart will face challenges with just as much fortitude and strength than any of other child because of the place I am today with the help of NOAH and the connections I've made. To all of the Moms who have reached out (some of whom we've kept in contact regularly, as "internet friends" but know me better than a lot of people in my daily life),  to this blog, to my email, through Facebook, and now again through NOAH, THANK YOU.

We are on this journey together. Your feelings are valid. Our babies are amazing. This is our journey. Let's enjoy it.