In today's podcast, we talk to Jeneva Stone, a writer, caregiver and "sub-amateur" photographer. Jeneva and her husband Roger live in Maryland and have two children, an eighteen year old daughter, Edith and a twenty-one year old son, Robert. Robert has the rarest of rare diseases, so rare that he was undiagnosed for 14 years. Robert's dystonia is globalized and progressive; he is, essentially "locked in."
Despite being non-verbal, Robert has much to say and uses sophisticated eye-gaze technology to communicate. He has a wicked sense of humor, and Jeneva and Roger agree that he is "the happiest kid in the world."
Listen on iTunes
Jason, Elizabeth and Jeneva had a lively discussion about the labyrinthine path to diagnosis, the conflict about knowing or not knowing what's happened to your child and the randomness of the rare genetic mutations that might be "discovered" but that have no applicable treatments.
The ability to communicate -- and speak -- can often define us, so when your child is non-verbal, you look for ways to "hear" them. "Robert is a very responsive individual," Jeneva states. "There's a lot going on in his head, and as people start to speak with him and interact with him, they get that."
Ironically, Elizabeth and Jeneva are both writers with non-verbal children and passionate about words, feeling compelled to shape them into poetry and prose that reflect their individual experiences. They discuss with Jason their feelings of responsibility as voices for their children but also as artists in their own right. They agreed that their children and caregiving have informed much of their work. For Jeneva, motherhood has a huge and obvious impact on identity, and both Jeneva and Elizabeth felt that the constancy of caregiving for their disabled children deepens the complexity of what it means to be a "good" mother and an artist.
Jeneva is the author of the essay & poetry collection MONSTER, which meditates on the intersection of disability, caregiving and medical science. While working on what became MONSTER, she received fellowships from the MacDowell and Millay Colonies.
When she's feeling confident, she likes to think of herself as an artist, her primary subject being her son Robert. She keeps a blog and Facebook page, Busily Seeking, Redux, and has a project ongoing on Instagram #dayinthelifedisability.
Purchase < $100
The Echo and the Echo Dot with an Amazon music subscription
Nobody's Perfect by Nancy Miller
Jimmy Lin, Founder/President of Rare Genomics Institute