I have been writing my way through hard things for more than twenty years. My first blog followed the years Robert and I spent trying to build our family through infertility and adoption. It became a book, Family Bound.
The second started three days after my sweet Little Miss Hannah was born in July 2008. So many people were asking for updates that having one place to share them was easier. That blog followed her diagnosis of Gaucher disease type 2, her life, her death, and the first years without her. I started it for the people who already knew us. Along the way, it connected us with researchers, reporters, and other families.
Writing has always been a kind of therapy for me. It still is. Now, I also write because there are things families think and rarely say out loud, and assumptions about rare disease that deserve a closer look.
Here, I write about what happens after a diagnosis, the distance between support on paper and help in everyday life, and the parts of family life that can get overlooked when so much revolves around one person’s care. I bring my experience as a rare disease parent and advocate, knowing that another family may experience the same thing differently.
Some pieces are for families and people living with rare disease. Others are for advocates, clinicians, and anyone whose work touches their lives. I hope you recognize something you have struggled to explain, or understand something you hadn’t considered.
I’m bringing earlier articles together here alongside new writing. All of it is free. If this sounds like writing you’d like to keep reading, subscribe to receive new pieces by email.
A good place to start is The Geneticist’s Office, about the day of a diagnosis and what no one tells you afterward. If it puts words to something you’ve experienced, or helps you understand someone else’s life, send it to someone who needs to hear it.