One year ago I gave birth to a precious little girl, Rosalie. Though she is small, she is MIGHTY. She currently says two words: “done” and “yay!” Both are incredibly telling of her joyful, feisty personality; she exudes happiness and is generally delighted by all that life has to offer, but she has always made it perfectly clear to everyone when she is just…over it. She found her voice at birth out of necessity, effectively communicating her likes, dislikes, wants, and needs – loudly – to anyone who will listen and respond accordingly. If this is a glimpse at how she will advocate for herself in life I could not be happier – because she will need to learn how to advocate for herself as she grows.
Rosalie was born with hydrocephalus, a brain condition with no cure that currently has only one treatment: brain surgery. She had her first brain surgery at two days old and has had a total of 4 brain surgeries to date. My husband and I were thrown quickly into the world of special medical needs parenting, but when Rosalie was 7 months old we were sent reeling by a new diagnosis: Cortical Visual Impairment (CVI).
I had barely begun to identify as a special needs mom when all of a sudden I realized that we were officially parents of a child with a lifelong disability. “Special needs” is not always synonymous with the word “disability,” and for the first time I felt the magnitude of what it means to parent a child with a disability of visual access. However, the months we spent researching hydrocephalus, the extended hospital stays, the frequent MRIs, and seemingly revolving door of appointments with various medical specialists had laid the foundation we needed to quickly dust ourselves off and pick up the torch as CVI parents that will do everything we can to advocate for our daughter and help her access this great, big world we live in.
In short, I did what many other parents do: I began devouring all the books, blogs, research articles, and various other resources that could help guide and equip us for this CVI journey. Perhaps it is a coping mechanism in order to better process this diagnosis that affects every aspect of my daughter’s daily life, but as soon as I began adapting Rosalie’s environment to accommodate her CVI I also began documenting the changes with photographs and/or videos. At one point I wrote up an explanation of our CVI adaptations for my personal blog, and the response I saw from a few other CVI parents encouraged me to create a dedicated space in which to share some of our ongoing everyday CVI strategies.
Thus, Everyday CVI was born.
We are not even 5 months into this CVI journey, so I fully recognize that I am in no way a CVI professional or expert, but we have seen major improvements in our daughter’s visual functioning in that amount of time and I am happy to share what I have done because I feel confident as an expert in MY field – as Rosalie’s mother and biggest advocate. If any of the strategies that have worked for us can help serve to inspire and/or encourage even one other CVI parent I would humbly consider this blog a success.
Thank you for joining me on this CVI adventure – and stay tuned for some actual content about our everyday lives with CVI in the near future!