Sophia was born on November 6, 2008, or the Year of the Snowman as she calls it. Due to memory loss problems she could never remember her birthday and for some reason believed she was born on July 15. We have always needed to find new and creative ways to help her with her memory loss issues and finally found something to make her birthday stick. I told her that when people asked her birthdate, no matter what came to mind she should stop and say "No!" to herself then immediately that should lead her to the only month that starts with "No" which of course is November . The date was easy because she was six years old when I tried this method, so I would tell her to then say her age. Finally, I told her she was born in the "Year of the Snowman" because the eight looks like a snowman.
Having to find ways to help Sophia develop in life, social situations, as well is in school, has always been an effort we didn't mind making.
Sophia began having medical problems at the age of six months and her entire life has been endless hospitalizations, testings, procedures, terrifying misdiagnoses, and almost always a statement that she would not live past one year. Or probably not past two years old. Or probably not past three years old. Or four years old. Endless doom scenarios.
Her entire life has been spent in and out of emergency rooms, displaying symptoms and presenting behaviors that either baffled the doctors or led them to categorize her as a "special needs child".
Her medical problems have consisted of a wide spectrum of symptoms from physical difficulties, loss of milestones, speech, digestive, neurological, visual, and memory issues to name just a few. However, the memory problems have been the most consistent. We have been told that it is rare for a young child to have long-term memory loss but that didn't stop her from proving otherwise. Because of these issues, including the memory loss, self-mutilation, and violent tendencies, we decided it was best I close my business and care for her full-time at home where I could homeschool her so she could receive my undivided attention and care.
During several random times in her young life Sophia would forget who I was even though we were together 24/7. We learned ways to cope with her memory loss and help ease the turmoil it created in our home.
Sophia struggled with a myriad of medical issues and behavioral issues which could not be specifically identified. My husband and I made an agreement never to place her on medication if the doctors could not identify an actual specific disease, condition or confirm a diagnosis. We did not want to just "drug her up" if the medication would not cure her. We agreed to try everything except prescription medications until a time came when we had no other choice or she was actually given a confirmed diagnosis.
Unfortunately for years she was always placed in large vague categories medically. Many doctors would perform tests and always say they would know what it wasn't but didn't know what it was . Many generalized diagnoses were suggested to us such as pseudotumor cerebri, meningitis, progressive neurodegenerative process, autism, aspergers syndrome, mitochondrial disease, lupus, etc. never lead us to any solutions.
Sophia's life carries many stories of medical struggles, but it is the past two years that we will highlight first on this website because it is this chapter that put things into perspective.