As many of you know, I have chosen to honor Jason’s loss with a personal story of learning and love from our grief journey. As I reflected over this past week on what I may write, I knew that what was on mind mind was something that I have said so many times over the last 8 years.

In the very complicated grief of losing a child I often found myself explaining my recovery and desire to let the world know that I was okay. I frequently said that I wanted to live my life in a way that my younger son would not end up saying to his friends that “his mom was never the same after his brother passed away”. I understand the fear of how my grief could affect my younger son but the last time that I made this statement a voice inside me told me to stop it.

I knew what stop it meant. It was time to acknowledge what has happened since Jason’s passing, we needed to acknowledge that we are not the same since the beginning of our grief journey. Our experience and the decision to focus on inclusion through our I Have Resolve Foundation has given us the opportunity to learn so much.

As a parent of a child with special needs I always considered myself quite evolved on the subject of inclusion. I prided myself on being empathetic and someone who did not shy away from a difficult discussion or cause. My son was my world, and we cherished our precious time together. What I did not understand was that even with Jason, I was chasing normal. I was not even aware of what ablism meant, but I do now. Today, I see that I always worked for the idea of normal, we always wanted to fit in. I celebrated success in terms of standard ideas of achievement and did not focus on celebrating our differences.

Chasing success based on a notion of ranking ability began to sound ridiculous to us. Our foundation focus is on inclusion and celebrating each individual, slowly we learned what that really meant. True inclusion is a celebration of what we all bring forward. Belonging means to include everyone and their differences, but it additionally means to love those differences, and accept everyone as equal.

Our learning and personal growth is unlike that of the analogy of a butterfly. I would currently describe us more like a moth, awkwardly flying and going in circles, but we are flying and moving forward, towards our own unique path. We see beauty in all differences.

So, to sum up my original thought on what my younger son may say to the world when he turns 20. It would be with pride if I heard him say “my mom was NEVER the same after my brother passed away”.

With gratitude and profound love we remember our beautiful son Jason, as now we understand what it means to celebrate everyone.