The internet is a double edged sword when it comes to parenting a child with special needs, especially those that have rare conditions. A quick Google search leads to worst case scenarios, instant panic, and usually a lot more unanswered questions. It can also be a lifeline when you feel alone and that no one knows what is wrong with your child.When my daughter was 4 she was diagnosed with an Arnold Chiari Malformation. That is a fancy way of saying her brain herniated into her spine, blocked spinal fluid flow and bad things started to happen- gross and fine motor skills regressed; falls, pain, and muscle weakness were a daily issue. Surgery was performed shortly after diagnosis, and even though it wasn’t a cure, it helped manage the symptoms.

Until it didn’t.

Less than a year after surgery, memory loss became a huge problem. It became like living with Dori from Finding Nemo. Questions were asked repeatedly. Even memories that should be ingrained in her, like where her bedroom was, were lost in Josie. Her memory was just the start of the dominos. After the memory problems started, executive function problems, spatial awareness, and inability to cross the midline soon followed. Her drawings, that shortly after surgery took shape and meaning, turned into Piccaso-esque drawings with no hint as to what they were.

Our team of doctors were at a loss. Once again she was an anomaly. She was something they had never seen before and passed the buck to someone else. Josie ended up being diagnosed with DD-NOS (Developmental Disability- Not Otherwise Specified). While this diagnosis meant that I wasn’t crazy (well, not when it came to this), that was it. The diagnosis didn’t come with understanding, or instructions on how to help her. It was just letters to add to our diagnosis alphabet soup.

This is where the internet worked its magic and lead me to other parents of Chiari kids, kids like Josie. On days when I have to answer the same question 15 times in an hour or I am exhausted from spelling out every step of what should be a simple process, I can turn to those parents who understand. While it isn’t a magical solution to Josie’s challenges, it is nice to know that she isn’t alone. That I am not alone.