That "Left Behind" Feeling
A special thanks to the parents who granted me permission to use their kids’ photos.
I was a teacher. Technically, I still am a teacher. I am a Teacher of the Visually Impaired -- a TVI. My license was just renewed, so I have credentials for 5 more years. I have 4 students that I see on a regular basis and absolutely adore. There are a bunch more that I still feel responsible for and miss terribly.
Codie and I used to work on reading maps and riding buses to get around the Upper Valley. We always used our work as an excuse to get Starbucks and Five Guys. We always had fun.
This is Cole. He earned his wings in 2015. But before he died, he and his mom taught me some important lessons on being present in the moment and living a too-short life to its very fullest.
I have to say, I’m feeling like a lot less of a teacher these days. Where once, I was the go-to TVI in my agency for questions on Cortical Visual Impairment (CVI), my co-workers are now seeking out the training that I’ve worked for so many years to attain. They’re available on a full-time basis for consultations and they never take time off for surgeries, chemotherapy infusions, or general nausea. I don’t blame them, of course; it just makes me sad.
I haven’t lived a life of superlatives. I wasn’t the “most likely to” anything in high school, and I did great in college, but was never the best. It was always okay, because I was working towards my calling – this career that I’ve loved for close to twenty years. Inside of these two decades, I’ve taught kids to read, advocated for students, and achieved the honor of being the CVI “expert” in my agency. At the same time, I’ve enjoyed access to the knowledge and experience of my fellow teachers when it comes to topics such as Orientation & Mobility and Assistive Technology. The TVIs at the Vermont Association for the Blind & Visually Impaired? We make a hell of a team, and the visually impaired kids in Vermont have been lucky to have access to this cohort. You don’t just get one of us. You get us all.
CVI is the leading cause of visual impairment in the developed world, and is growing steadily. The more medically fragile babies that survive birth, the more infants we see with injuries to the “seeing parts” of the brain. We are still learning so much about the disorder – how to assess, intervene, and measure progress. Every child I meet has something unique to teach me about his or her particular expression of CVI. When I’m not at DHMC for my own health issues, I’m often there to support their attempt to screen PICU babies in the hopes of getting the earliest possible start on interventions for kids who show the characteristics of Cortical Visual Impairment.
Sophia works incredibly hard on using her vision to gather information about her world.
Often, my behind-the-scenes temper tantrums about my cancer center on my feelings of being ripped from the most exciting and productive time my field has ever seen for kids with CVI. So many people just don’t get it. They don’t know how important the research and collaboration is. They don’t know that we’re standing on the precipice of interventional breakthroughs. They don’t understand that, with increased services for kids with CVI, we can actually improve how they see. How unfair that I DO get it, but don’t get to participate in the meetings, student services, and think tanks because my colon and liver have turned against me.
You guys, I was really hoping that, as with many of my blog posts, I would start writing about this and come up with some gem of wisdom by the time I got to the end. Yet, here I am, 500 words in, with no new understanding and no real peace about this problem. Well, thanks for reading my venting. Perhaps now that it’s out there, the peace will follow… I’ll keep you posted.