For Families with Rare Disorders

Much of my writing has been shaped by my son Ike and our family’s experience with his degenerative illness. These selections tell our story:

• Blue Peninsula
• To Uzbekistan and Back
• Crocuses, UConn, and Derek Jeter
• Thanksgiving
• Building

During my son’s illness, I found aid in various places online: these links may help if you are dealing with a complex diagnostic process, absence of diagnosis, or degenerative disorders. I’ve included links to the poetry and literature that helped me as well.

• Disability Studies Quarterly
• Camphill International
• Parent to Parent USA
• Dougy Center
• Asperger’s Conversations
• Child Neurology Society
• Exceptional Parent
• MedLinePlus
• Family Village
• PubMed
• National Institute of Neurological Disorders & Stroke
• National Organization for Rare Disorders
• National Tay-Sachs and Allied Diseases Association
• NYU Literature, Arts & Medicine Database
• Academy of American Poetry
• Verse Daily
• Poetry Daily