Welcome to the Oonaverse…

all you need is glove

Greetings, earthlings. This is Oona’s mom Sara, writing dispatches from the Oonaverse. Oona is a 7-year-old DeafBlind child with CHARGE syndrome. I hope that sharing our journey with the world will be helpful to other families, and also build community. I write about a broad range of topics that affect Oona’s opportunities and quality of life here in the Oonaverse, including education policy, sign language, health services, disability justice, etc. I hope you enjoy the blog. Please comment and write me a note in the “contact” section!

6 thoughts on “Welcome to the Oonaverse…”

  1. Dear Oona’s mom whom we are blessed to know, just as we are blessed to know Oona! Thank you for your wonderful posts. Oona’s navigation of her world has been astounding to watch as it evolves and I know it will continue to grow. Communication at every level is important to every species–if some options are missing, it’s up to all of us to help work around them and not make assumptions. Watching children’s frustration diminish as they learn speech and watching brain injury patients’ frustration as their speech is challenged– both are reminders of how precious it is. It’s not the same, but even as we have taught our now-deaf dog to respond to hand and other signals (dangling the leash), we continue to talk to her for no apparent reason. Perhaps it comforts us, or perhaps some messages get through when we talk when we hold her.

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