I was born with Dandy Walker syndrome, which is a malformation in the back of the brain near the brainstem. The malformation occurs in the part of the brain (the cerebellum, fourth ventricle) that controls balance, coordination, fine motor skills, vision, and cognitive thinking. While pregnant with me, Mom was simply told that part of my brain didn’t develop and that was it. Granted, DWS isn’t common, so a lot of doctors, especially back then, hadn’t heard of it.
Now, more and more doctors and medical staff I’ve seen are at least familiar with it. One doctor even said, “So, you’re aware DWS affects your liver and kidneys?” Huh? Yeah…sure, I know. (Nope. I didn’t know.) I guess that explains the hydronephrosis, nonalcoholic liver cirrhosis, and diabetes type 1.5, the latter two of which are autoimmune diseases.
I didn’t walk until I was 2, and I was in physical therapy to help with that, but I don’t remember it. We didn’t learn I had DWS until I was 17 and my pediatrician ordered a head CT scan to see why I was having headaches all the time. Fortunately, I only have a small amount of hydrocephalus, so I don’t require a VP shunt.
I also had crossed eyes, which were surgically corrected at 18 months old, and a strawberry birthmark – a hemangioma – up from my forehead a little past the start of my hairline. My brother took care of my birthmark one night when he dropped a toy stove from the top bunkbed onto my head, which I had poked out from my bunkbed to ask him what he had said. He had, in fact, told me to watch out because he was dropping the toy from his bed and he didn’t want to hit me with it. I find this hilarious; even more so when he would tell the story. I don’t remember that, either, but I was under 5 at the time.
So, all of that to say, I have some limitations. With DWS and AuDHD, I think differently and perceive things differently and I have some problems with critical thinking, and my depth perception isn’t the greatest. I also have diplopia, which is double vision. I’ve had 3 eye surgeries and the surgeon informed me that it’s my brain mucking things up because they can’t get my eyes any straighter than they are. I must sound like a monster 😂.
My husband, Adam, didn’t know any of the above when we met in high school or when we started dating 9 years later, as my medical diagnoses are not something I openly talk about. My family is very open with each other about their health issues except when they pertain to one’s mental state, which is odd because depression and bipolar are big on the maternal side of my family. Mom’s explanation for my personality and behavior was, “Oh, that’s just Cari,” and family’s like, “Oh, okay.” I love that my family is so accepting.
Cari R Esta 