The first time I heard the doctor utter the words, “Your daughter is blind,” I immediately felt the world I once knew morph into one I never realized existed. I’d never known anyone who was blind before that day. I was lost. Motherhood itself was new to me, so how was I supposed to be everything my child needed when I didn’t even know what that was?
It wasn’t until later when I heard another family’s story, a story that so closely resembled my own, that I smiled in the sheer comfort of finally knowing another being who could say, “Yes, I understand” – and truly mean it.
This year was my second time attending the Early Connections Conference on the campus of Perkins School for the Blind. It was held on April 30, a perfect spring day for learning, meeting new people and sharing a few laughs and tears.
The Lower School hallways were full of chatter as families and volunteers shuffled to get kids settled in the childcare rooms before circling back to the auditorium for introductions. I overheard one group of parents excitedly say it was their first time attending a conference about visual impairments. They were eager to learn everything they possibly could in a day.
For the morning session, I chose “Growing Good Communicators” to learn more about methods for effective interaction – something I have repeatedly struggled with as a mom of a child who is blind.
The presenter, Millie Smith, spoke to a full room of parents and professionals about the foundations of early communication with a child younger than 2 years, encouraging us to ask questions at any time. She gave everyday examples which she demonstrated with videos of real situations and real kids – something often hard to find as a parent.
The next session was my favorite – the parent-to-parent groups, which were divided up by your child’s diagnosis. I met a young couple who had an infant with the same eye condition (bilateral anophthalmia) as my daughter Madilyn, who is now 11. I was so excited to be able to answer some of their questions, having been through the infant stage already. It’s undeniably comforting to be surrounded by others with whom you can speak freely about the intimate details of being a parent of a child who is blind.
Next was a picnic-style lunch outside on the lawn, where families gathered and kids with white canes frolicked around the playground, thrilled to discover the different activities. Once finished, I walked back over to the Lower School building, past volunteers still playing with giggling kids in the bounce houses. The school was full of happiness, sending a sense of peace through me.
I decided to take part in the “Orientation and Mobility for the Playground” session. The presenter, Eric Shaw, took our group outside so we could experience firsthand the paths and obstacles our kids navigate each day. It was fun to experiment with the different white canes, find my sense of direction with my eyes closed and really take the time to think about what it’s like for my daughter to access the play areas.
The keynote address by Emily Coleman during the closing session was spectacular. She’s the director of outreach at the Washington State School for the Blind, and spoke about her own ups and downs as she navigated the first several years of raising her visually impaired child, Eddie, who is also 11 years old. She made us laugh and nod our heads in understanding as we listened to her echo our own experiences with our outside families and friends, teachers and therapists, and most importantly, the conversations we have within ourselves.
Being a parent of a child who is blind is an emotional journey few get to experience, but having someone else in your life who can truly understand what you’re going through is priceless. I’m so thankful for everyone who traded in their beautiful Saturday, along with the hours in planning beforehand, to help families like mine connect for the greater good, bringing our hopes and dreams for our children’s futures one step closer.
Hillary Kleck is the web content coordinator for the Information Technology department at Perkins School for the Blind. She is also on the board of directors of We Perceive, Inc., a nonprofit organization promoting a fully accessible world for children with visual impairments.