One Family’s Journey
The Path Less Traveled
The morning our child was born, a dazzling orange sunrise could be seen through the hospital window. It symbolized for us the start of an adventure. We were new parents, and not only that, parents of a Deaf newborn child. My husband and I are also Deaf, native in American Sign Language and “somewhat” fluent in spoken English. There is a common assumption that Deaf parents leap for joy upon discovering their child is also Deaf. In fact, our feelings were mixed as we contemplated the myriad of ways the lives of our child and us would be impacted. We know from our relationships with other Deaf parents of Deaf children that we are not alone in the “mixed feelings” experience. We welcomed our baby, our Deaf baby, with love that spilled into the room like the sunrise, gearing up to face the adventure ahead.
My spouse and I have, in a sense, always felt “different.” We were raised by hearing parents among hearing siblings and mostly mainstreamed in school and college. We had Deaf and hearing friends. That our child would be Deaf seemed unlikely. During the pregnancy we prepared for raising a hearing child, a CODA (child of deaf adults). We tried to imagine what it would be like to hear and what would be best for our child. Instead, following the newborn hearing screening, the nurse came to us with the news that our baby was Deaf. We almost fell off our seats! This must be fluke! Less than 5% of Deaf children have Deaf parents. On top of that, we (parents) are in the 95% category of Deaf people with hearing parents. What were the odds?
The hearing screening would be repeated within 24 hours to be sure. In between the first and second screening we went “old school” and banged the metal trashcan in the hospital room. Our sleeping newborn did not respond to the racket, though we wonder about the family in the room next to ours. The second screening indicated the baby COULD hear, but we knew deep inside that the test was wrong and our child was Deaf.
At about one month of age, we took the baby for an evaluation with an audiologist who confirmed a bilateral hearing loss. We then made an appointment with a pediatric audiologist to determine the extent of the hearing loss. Our baby was determined to have bilateral severe to profound deafness. Hearing aids were discussed with us as an option, and we agreed to the fitting.
The sun continued to shine upon us as we adjusted to parenthood and the realities of meeting the needs of our sweet Deaf baby. We relied on our faith in God and working together to make sure our child had everything necessary to develop well. Parenting is rarely easy, and parenting a Deaf child brings more challenges, especially around making decisions about hearing amplification, educational options, and communication modalities. As Deaf adults, we were well acquainted with the array of options available, except one . . . yes, that one. The cochlear implant.
Hands & Voices entered our world soon after our child was born and confirmed with a hearing loss. A Hands & Voices parent guide (who was Deaf) video phoned us out of the blue. At the time, I (the mother) was frazzled and worn out with this major life change, but also desired relationships with other parents who have Deaf children, especially fellow Deaf parents. Our parent guide was an exceptional person, and graciously answered my many questions. She shared her story, including that her children were Deaf with cochlear implants and attended an auditory/oral program. This Deaf family who made the choice of implantation surprised and captivated me. I thought such families were NONEXISTENT!
Meanwhile, within our community, news spread that our baby was Deaf and suddenly we were receiving extra attention from Deaf people who previously were merely acquaintances. One Deaf father even welcomed us to their “elite” group within the Deaf community. I guess “eliteness” doesn’t suit our values and personalities, because we felt awkward and troubled. At the same time we were clandestinely researching online about Deaf families implanting their Deaf children. We came upon a networking group called CICDA (Cochlear Implanted Children of Deaf Adults). We contacted the group facilitator and began communicating with several Deaf parents around the country through videophone. We asked questions about the devices, rationale for their decisions, how the Deaf community reacted to them, and more. CICDA members and the Hands & Voices organization made us feel warm, providing a cloak of support as we navigated this new world!
After seeking support and wisdom from family and Deaf and hearing friends, and a grueling mental debate within ourselves, we made the decision to implant our baby. Fortunately, we lived near a hospital that had highly endorsed pediatric ENT surgeons. We asked God that if it were meant to be that our child should receive this cochlear implant, the testing and evaluations would proceed without roadblocks. Our child was shown to be a good candidate for the implant. And once again, news spread like forest fire around the Deaf community. We, Deaf parents, had decided in favor of a cochlear implant.
Some Deaf folks were spiteful. We were the targets of cold looks, passive aggressive behaviors through Facebook and the subject of gossip. I’ve been called a traitor. A few Deaf parents even kept their Deaf children away from us. We are adults and can handle unkind behavior on the part of others, but we wondered what this might mean for our child’s future social opportunities. At the same time, we were convinced this was the best choice for our child, even if we would take the road less traveled. Our child will have friends, be among excellent role models and enjoy tremendous opportunities in the Deaf and hearing communities. Like all parents, we are concerned that we always do the best for our child, but we see the sunlight and stay the course on a positive path.
We turned away from certain unpleasant people and immediately found a new group of Deaf people who are open-minded and accepting of our choices. We began meeting more Deaf people who themselves have cochlear implants and use ASL and, to the best of their ability, English. Our world has expanded! Our child began attending an auditory/oral program where we met hearing parents who are amazing, supportive people. The hearing parents have unfailingly been eager to learn about who we are as Deaf adults. What a blessing to learn from hearing parents as they learn from us. One hearing mother told me that after meeting us, she finally felt confident that her Deaf child will be all right in the future.
Sure there are dark moments, but even then, the moonlight is enough to keep our eyes on the positive path. Our child is doing remarkably well. A recent listening/spoken language assessment indicated a greater than one year gain in spoken vocabulary. We couldn’t be more proud and pleased! Our baby is growing up and doing very well with the technologies of a cochlear implant and a hearing aid. Our child is a bimodal bilingual – which means being fluent in ASL and spoken English. I hope and pray that our experience will positively influence more parents to recognize the value of being immersed in two languages and cultures. Being in both “worlds” is truly rewarding. We are excited to anticipate that our child will be a successful, contributing member of the community. Our child is the star in our sky, a sky filled with many other amazing stars as long as we parents stand solidly by the sides of our children through the everyday sunrise and sunset.
Editor's note: This is a true story about one family's journey. To protect the privacy of this family, and at the author's request, their story is published under a pseudonym. We would be happy to forward comments to the author through firstname.lastname@example.org