Our Real Rare Life
Perspective is everything, and this is mine.
Our Real Rare Life
Perspective is everything, and this is mine.
About Our Real Rare Life
The Story
What started out of loneliness and a desire to help others understand has turned into so much more. I started sharing our journey raising a child with a rare disease who was disabled and medically complex over 10 years ago. Our amazing Christopher died on January 8, 2025 and I'm doing my best to figure out life without him. I'm making space for grief, my new constant companion. Sharing life after the loss of one of the greatest gifts I was ever given.
Meet the Family
I’m definitely outnumbered in the family full of boys. And to many people’s surprise I am married…although you won’t see or hear from my spouse much. Sharing isn’t his thing, it‘s mine. He is more than happy to be behind the scenes and not in front of the camera. Our oldest is cautious, kind, and a rule follower, while our youngest is a thoughtful, silly, boundary pusher. Our middle is Christopher who had PMM2 CDG, and although he couldn't talk he was definitely opinionated and mischievous. We are all learning to live after loss.