Welcome to the Tape House.  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 to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers.  The incidence and severity of the various aspects of TSC can vary widely between individuals.”

Because of tuberous sclerosis complex my son also has autism, epilepsy, anxiety, depression, OCD, an intellectual disability, aggression and some other dx too.  He had 2 brain surgeries in 2011 and had most of his left temporal lobe removed.  And to make life more interesting, my son also has type 1 diabetes (not sarcastic, at all.)

Since my life is so complicated right now I needed a place to process my thoughts.  This blog will house some of my poetry and disguised journal entries.   My goal is to also showcase my son’s artwork with my entries because he is able to capture such beautiful, raw emotion in his work.  It just seems natural.  He loves art, christian music, Frank Sinatra’s music, animatronics, and he is obsessed with tape.  He goes through many rolls of masking tape per week.  (He graduated from Scotch tape about a year ago.)  We find it everywhere: on our feet, in our pockets, on the counters, and on the endless stream of paper faces he creates.  He also has bright blue eyes, a compelling smile, and amazing hair.

Sometimes my entries are hard to actually put on paper – the finality of it seems to have some power.  I want to be respectful but truthful on this blog journey.  What my family is going through right now because of his extreme behaviors, that we can’t get a handle on is: hell on earth, troubling, confusing, damaging, and horrific.  But no matter what –  my son is loved, and that is an important take away to remember from anything I may write.  It is my mantra, “I love my son.”

To find out more about tuberous sclerosis complex please visit,

http://www.tsalliance.org

Thank you for visiting,

Sheila