By Elaine Bethke
My husband Bill and I are parents of a grown (more than 40 years old) legally blind daughter. She was our first child and neither of us had spent a lot of time with babies, so Ericka was at least six months old before we suspected vision problems, other than what the doctor called “lazy eye.”
We had to patch that eye for several months to try to make the muscles stronger. You can imagine what fun that was with a wriggly baby who had no idea why we were doing this to her. Still we persisted. When this did not fix things, we were sent to a pediatric ophthalmologist in Madison who diagnosed her almost blind in one eye and with very limited vision in the other. We were devastated and went home and did lots of crying, hugging each other and her.
Being action-oriented people, we started to think of ways to make sure she wouldn’t miss out on life. We took her for walks daily and described everything we saw and then took her out of the stroller and put her hands in the leaves, helped her walk in puddles, and put her little nose right up to cool things like rocks and books and the window. Since she had some vision, she could see pictures and words and people, etc. I drove her across town to a nursery school for visually impaired kids three times a week. She made friends easily as she was very vocal and cute. Greta, whom I babysat, was several years older and loved to take Ericka around and they would swing and play ball together. At about 18 months, Ericka got glasses which did help her see better ‑ when we could find them. With a toddler we spent many hours digging through the toy box, looking under the sofa, hoping they weren’t in the sandbox. By then we realized that there wasn’t much Ericka couldn’t do. We just had to find a different way to do it. It tested our creativity and her’s too as she sometimes figured out how to do something new on her own, like any child.
Through her school we found out about the National Federation for the Blind and their magazines for parents of blind children. They introduced us to workshops where Ericka could meet and play with other blind children and we could discuss what worked and didn’t work with other parents dealing with the same challenges we were. Ericka went to Sunday School and playtime at the library and on trips to our cottage up north where she fished and watched chipmunks and went on boat rides and threw rocks in the lake to hear them splash.
In short, like with any child’s parents, we got into routines. We laughed and cried and had fun and bragged about her and complained about her and had days where we wanted to pull our hair out in frustration. We started to wonder about things like how will she read, will she be able to go to school, will she have boyfriends and get married? Will she have a job? Will she be with us forever? But those kind of questions were too hard to contemplate, and truthfully, there was nothing we could do at the moment except help our family to thrive day-by-day and do our best to raise a happy, confident child who we hoped would be able to answer those questions when the time came. The questions would have to be answered one-by-one by our daughter, not by us. To assume she couldn’t do things or to be overprotective would limit her future so she rode a tricycle and later a bicycle; she took roller skating lessons, and played ball and climbed on the jungle gym, and went ice skating.
To new parents of blind children: Have faith in the child and yourselves and love them and help them to discover the world. As you help them see the world you may see it in a new way too as you describe what things look like and explain sounds and the way things feel. Your words can expand your child’s world in a way that is precious to both of you. You can’t escape what is ‑ the disability – but you can find ways to make life full and rich for your child. Your life will be different than you had planned, but different does not have to be bad. Trust yourself.