Hi and welcome! My name is Sheila and I have 3 great kids. My youngest, Riley, is 16 and the reason this blog exists. I like to think of this blog as an online gallery of beauty and heartache. Riley was diagnosed with tuberous sclerosis complex when he was an infant after we witnessed his first horrifying seizures called infantile spasms. Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors (usually benign) to grow in many different organs. Riley’s tumors are mainly in his brain and kidneys.
Because of TSC my son also has: autism, epilepsy, anxiety, depression, OCD, an intellectual disability, and aggression. He had 2 brain surgeries in 2011 and had most of his left temporal lobe removed in our efforts to stop his complex partial seizures. In 2013, he was diagnosed with Type 1 diabetes. The issue that is the most crippling for our family, however, are the aggressive behaviors/rages associated with his autism and/or diabetes. It’s a very complicated process trying to figure out the source, to be honest.
This blog is a way that I escape. I often write about Riley’s rages, but mostly I write about the pain that living this life brings. Riley’s aggressive rages have impacted our entire family and it’s grueling to find people who are capable of understanding. Recently, I was fortunate to be asked to write an essay for a wonderful website called Springible on the subject of loneliness as a caregiver. It was an amazing outlet to discuss such a difficult topic.
Despite Riley’s challenging behaviors, he is a pretty cool artist. So, with every entry I showcase a piece of his artwork. Riley sees the world in a way I never will, and that fascinates me. My hope is that you will find something special in Riley’s artwork that will make you wonder and that my poems will give you some insight into our world.