Guest author, Divya Goel, shares her journey to self-advocacy and living her dreams as a young woman with Usher syndrome.
by Nilam Agrawal
I wrote this poem in May, 2012 when my daughter was 2 1/2 years old. She was acutely sick with H1N1 and had to be intubated. She went from being a sighted child, to suddenly losing all of her vision in both her eyes (she started losing her hearing 6 months before that due to an episode of high fever). For 3 long weeks she was in a world of total darkness and total silence. Then, she began to see in low lights and regain some of her hearing. That episode was a new turn in our journey. My husband and I were hurting and nervous. She was scared and lost. We had no idea what help we needed or how to support her. I wondered, if she could say what she was feeling, what would she say? I wrote this poem to help me find a purpose and find something to hold on to when I was struggling to even breathe. For the next 5 years, we went through two different medical (‘mis)-diagnosis before receiving the correct diagnosis of Usher syndrome for both our kids in December 2017 (a decades-long medical journey that started with our older son in 2007).
Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.