Our son Ben
was our firstborn. We were thrilled to be new parents, and we looked forward to
sharing music and laughter, and being an active family.
wasn’t rolling over at four months, we knew something was wrong. When he still
wasn’t at six months, we were told that he had cerebral palsy on one side of
his body. They also warned us that he might have many other challenges,
including being hard of hearing.
all sorts of medical professionals to cross each off the long list of possible
problems. To our relief, most of the issues never appeared. However, at eight
months, we learned that Ben was profoundly deaf. We grieved the loss of sharing
music, listening to his little voice, and watching his body develop like other
children. I thought I would never stop crying.
we moved onto taking action. This felt good. Our family learned sign language.
Ben was fitted with hearing aids. We received incredible support from our local
school district, professionals, family, and friends. As difficult has this
journey has been, I have considered these relationships to be life-changing and
was almost four, he had cochlear implant surgery. This was a difficult decision
for us, but I would do it again. Only this time, I would have done it when he
was younger. This boy, who could only feel a train go by and tried so hard to
please the audiologists by pretending to hear sounds that he couldn’t, could
now hear speech. We cried again, but for different reasons. Soon we would share
our music, hear the sound of his developing voice, and his body would conquer
the many challenges of cerebral palsy.
is in high school. He is a young man who signs, uses cued speech (a visual
reinforcement system to spoken English), and uses his voice. Not everyone can
understand his speech, and he doesn’t hear perfectly, so visual communication
serves him well. He also has many “tools” to choose from.
that Ben would have a wide community to support him: a signing community, a
cueing community, and a hearing community. I rejoice when I hear and see him
argue, laugh, spar, or share sweet moments with his sister – whatever method
they choose at that moment.