Listen to Burju Sari discuss her experience with a neurologist, when she received an initial CVI diagnosis for her child:
I arrived at the NICU that day and the nurse told me that the neurology team wanted to talk with me about Omer. I had a bad feeling so I asked them to wait until my husband comes from work.
After my husband came, the neurology team arrived immediately, which is not usual. To be honest, it was very blurry after they started talking. That’s the only day I can’t remember clearly.
But I heard the term “brain injury” and everything kind of stopped.
The doctor and the team was talking but I couldn’t hear anything.
I started asking them very nonsense, silly questions like “Is it going to get any better?” or “Is there a surgery that can fix his brain?” “Can you please help him?” kind of questions and I know they were kind of shocked about my clash. They were not expecting my questions.
The only thing I remember clearly is how intense he was. The neurologist smiled at me and said that it will never get any better or worse.
“It’s like a scar that will stay forever…”
After my endless nonsense questions, he started explaining to us what it will look like in the future. A couple of quotes that I remember from that conversation are he said that it’s like a scar that will stay there forever; and then Omer will probably be in a wheelchair, and then he also said that his brain injury type is “Cystic PBL” which means it’s all over his brain and it’s very significant but it will most likely affect his legs more than other parts. He will most likely be severely cognitively impaired and nonverbal. In it at the end, he asked us if we are ready to talk about ‘future’ more in detail. We were not ready for the future.
Immediately, my husband and I agreed that it was okay. He can be in a wheelchair and play basketball or any other sports in his wheelchair, or he can get married with someone who is in a wheelchair as long as he’s healthy.
Another important thing I remember for sure is they never talked about “CVI” which is very common with this type of brain injury and prematurity.
I left the room. I left my babies and my husband, and I ran away to find the closest exit. I needed to cry screaming. I needed to exit that moment to process what was going on.
“I’m stronger and getting stronger each day as I’m looking at that scar.”
Still, today, when I go to the movies when they say, “Please locate the closest exit,” I go back to that day. Yes, it is a scar that will stay there forever just like the neurologist said that day. But guess what?
I’m stronger and getting stronger each day as I’m looking at that scar. And I still run away to be alone when I need to as everyone else does, but I come back stronger.
Burju Sari is the mother of 10 year old twin boys. Burju’s and her husband’s CVI journey started when they found out one of the twins has periventricular leukomalacia. When Burju met her son’s TVI in 2010, she knew she needed to do something for other families and their kids. Her son, who has the diagnosis of Cerebral Palsy and CVI, has been an impetus for her achievements in supporting, educating and advocating for students, families and educators. Burju received Master’s in Education for Teaching Students with Visual Impairment at UMass Boston. She is currently employed with Perkins School for the Blind Community Programs as an Itinerant Teacher for Early Intervention. She works closely with Early Intervention families and service providers consulting them around how to support children with visual impairment.
What’s your CVI story? We’d like to hear it.
Join our private CVINow Facebook Group for parents and families, and share.