My name is Stacey Hiltman and this has been my attempt to write a blog about my son, however, it has taken me in directions that affect the whole family.
I have been married to my husband, Jay for over 20 years. He is my best friend and we have learned to tackle life together. I could not do anything without him and his support. He is an amazing man with a gentle spirit. He always lets me research and repeat all the details without ever sounding annoyed:) He is a fantastic father and I am so lucky that he chose me.
We have a beautiful 18 year old daughter Madison. She is the light of my life. She is truly my angel and helps me in ways that I never knew a child could. She is wise beyond her years and has a heart of gold. She suffers from Tourette’s syndrome. It is anxiety driven, so when she gets upset or stressed out her “tics” become more pronounced, but she has a pretty good handle on it. She is kind and loving and has the most gentle heart of anyone child I know.
We also have an amazing son Nathan who is 16. Nathan has many special needs. Over a 6 1/2 year period, he was diagnosed with Autism, Sensory Integration Disorder, ADHD and Optic Atrophy. In two years he went from 20/40 in his eyes to 20/400. He is considered light perception only and is legally blind and considered disabled for the rest of his life. The Optic Atrophy diagnosis is what led us to genetic testing. After 4 rounds of testing and years later he was diagnosed with Juvenile Batten disease on June 10, 2015. This blog started to chronicle the journey of what we have dealt with the last 6 1/2 years of his life and for me to put into words how we have been feeling. It has also been a way for our family to check in on his progress. He is the most amazing little boy who surprises me everyday.
I hope that you enjoy reading this and that you might check back often to hear how our family is doing. My original goal was to have people send us a postcard so that we could create a visual wall of places for my son to “see”.