The War in Holland

There is a beautiful story called Welcome to Holland. It describes finding out that that your newly diagnosed child with a disability won’t be the healthy child you thought you were having by comparing it to planning a trip to Italy and landing in Holland instead.

It’s positively brilliant. The author explains to parents that even though they prepared for the fast-paced exciting life in Italy and learned the language that they should give Holland a chance. And once they get used to it, they will grow to appreciate the beautiful slower-paced life there, with its unique landscape, tulips, and windmills, and even learn a whole new language.

This is all true. I found great comfort in the story and have referred dozens of newly diagnosed parents to read it when they’ve contacted me in the after-shock of a Canavan diagnosis. But Holland is far from perfect.

After being here for over 21 years, I have discovered that there is a secret war going on in Holland. It is a war fought by us, the parents of children with disabilities. We must fight all day, every day, to get services for our children. We fight to receive funding for medical care, we fight with schools, doctors, insurance companies, and we even fight with other people over handicapped parking spaces. We watch friends bury their children and cry with them grieving their loss while wondering if we’ll be next.

We are veterans of war, and many of us even have symptoms of PTSD. But living in a war-torn nation doesn’t mean life is unhappy. Holland is still beautiful. I have come to love and appreciate the life here. But sometimes you need to live in a place long enough to really become a local and to know the things only locals know and share only with each other. A tourist would never know about the secret war in Holland.

Ilyce Randell is the mother of two children, one typically developing 16-year-old boy named Alex, and one 21-year-old boy named Max who was born with Canavan disease. She has been working to help families affected by Canavan disease for over 19 years by advocating for patient rights, raising money for medical research, and increasing awareness about Canavan disease. Ilyce has recently launched the world’s first international Patient Insight Network (PIN) for Canavan disease through a partnership between AltaVoice, (formerly PatientCrossroads) and Canavan Research Illinois. This tool is critical for advancing research and networking patients worldwide. Ilyce is also the President, Director of Patient Advocacy, and Cofounder of Canavan Research Illinois and Canavan Disease Research. You can read her blog War Stories from Holland.