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Winter 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Debra Garvue, Parent, Kentucky

Reprinted with permission from Deaf-Blind Perspectives, 17 (1), Fall, 2009.

Abstract: The author shares her reflections on how she came to learn from her daughter with deafblindness the answer to every parent’s question, “What will my child be when she grows up?”

Keywords: , deafblindness, futures planning, adult life

Editor’s note: Deaf-Blind Perspectives is a free publication with articles, essays, and announcements about topics related to people who are deaf-blind. Published two times a year (Spring and Fall) by The Teaching Research Institute of Western Oregon University, its purpose is to provide information and serve as a forum for discussion and sharing ideas. The intended audience includes people with deaf-blindness, family members, teachers, and other service providers and professionals. To learn more about Deaf-Bind Perspectives, check out their website at .

When you learn that your child is deafblind, you become consumed by many concerns. Once I accepted and understood my daughter’s diagnosis, I still had many questions: not just questions about her current needs like “What can she see?,” “Who is a good therapist?,” or “When will her IEP meeting be?,” but also questions about her future. The most basic and gut wrenching question I had was this: “What is my child going to be when she grows up?”

I found this question hard. I had watched my older daughter flourish. When she was little and played with a doctor’s set, I dreamed of her becoming a doctor. When she tried to argue her way out of punishments, I thought to myself, “Wow, she would make a great lawyer!” But the basic parenting rules I knew didn’t seem to apply to Maddie. I couldn’t find her case in any parent book. Dr. Spock had no advice for me.

Maddie was born with Leber’s Congenital Amaurosis. Generally this genetic disorder affects eyesight only. However, in addition to her vision loss, Maddie was born with bilateral profound sensorineural hearing loss, severe hypotonic (floppy) muscles, a seizure disorder, and sleep apnea. She only has light perception and can see some hand movements if they are made within one or two inches of her eyes. She is in a wheelchair and, because of her weak muscles, has a feeding tube and requires oxygen at night. At 9 months of age, Maddie received a cochlear implant and loves hearing with it.

Given all of Maddie’s disabilities, I still can’t help asking myself, “What will she be when she grows up?” It is like a nagging ball of worry in the pit of my stomach. The question haunts me! Will my child grow up to be something, or will she be an eternal companion whom I care for and who never leaves her mark on society?

Recently during a very difficult time, I had an epiphany, one of those rare moments when a light shone down and I knew the answer to that question. Maddie had recently been hospitalized for about ten weeks. She was on a ventilator for eight of those weeks, and for awhile it was touch and go. I watched her struggle to survive. When she was about a week into her struggle, I developed a website to let friends and family members keep track of her condition, and I was blown away by how many hits it received. It seemed as if everyone was reaching out to Maddie and my family. Friends and family members shared Maddie’s site with people they knew, and soon we were receiving hugs and cards from people I had never met. It was inspiring to know how many people were touched by her fight to live.

This led me to wonder, to contemplate deeply, how many lives has Maddie touched? Therapists? Teachers? Doctors? Nurses? Friends? Family? The list is endless. And I realized that I already know what my child will be when she grows up, because she is already it. She has chosen her profession and is practicing it now, and I know that she is already making a mark on society. She is changing the way people think and function in their daily lives. She has inspired me to leave my job as an educator and enter the field of deafblindness with the hope that I can make a difference. What is she? Why, she went into the family business. She is a teacher.

To read Maddie’s journal, go to: .