My name is Sheila, and my youngest son was diagnosed with tuberous sclerosis complex 15 years ago as an infant. Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors (usually benign) to grow in many different organs. My son (currently) has brain, kidney, and some minor eye involvement.
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. Having listed a complicated laundry list of medical issues, the one issue that is the most crippling for our family is the aggressive behaviors associated with his autism. Apparently, this is a common cry for the families that have a loved one affected with TSC. We are trying our best to help him and create the best life possible for him.
I struggle with PTSD and depression and this blog started as a way for me to process my feelings and thoughts. I’ve gained a love of poetry in this journey and look forward to sharing our experiences in a delicate, literary way. I also want to show my son’s artwork with my entries. He sees the world in a way I never will; it just seems natural.