We hit another stumbling block the other night:  we sat around as a family and watched Bohemian Rhapsody – an incredible story, a love letter to Queen, and a small window into what it meant to be set apart (in many ways).   My son identified with being different on the level as only a 12-year old can: he associated feelings of  being separate and singled out as it related to his Celiac disease.  He turned to me and said in a quiet voice; “Mom, sometimes I just want to sit around with the guys and share a pizza.”  He took the story of Freddy Mercury and related to it at his level – he keenly felt his apart-ness, and his different-ness, and in that moment, it hurt terribly.

We have these ups and downs all the time.  Sometimes he is comfortable in his diagnosis, other times it rears up and smacks him in the face.  I have searched for a peer group for him to join, to show him he is not alone, and to provide him with a forum to share stories, feelings, discuss new research, and just 100% belong.  Sadly, the teenage set appears to be grossly under-represented.  There is a ton of information available for the newly-diagnosed, and there is a regular meet-up for adults, however the in-between is a vast chasm of silence.

And so I will try and change that silence; to bring a voice, a place, an opportunity for Celiac teens and young adults to go for information, gathering, chatter.  I will try to create a space for my son to have a voice and a place to feel 100% the same.

And to sit around with the guys, and just share a pizza. (GF)
Stay tuned….