One Family’s Journey:
“Thank goodness God only gives two ears per person” is a thought that never would have entered my mind seven years ago. Then, our only child was diagnosed with bilateral mild to moderate sensorineural hearing loss at age three. We had no idea what that diagnosis meant – for our child, our family, our way of thinking and our life in general. We evaluated our options and made the decisions we believed were best for our family, figuring things out as we went along. And then, our second child was diagnosed with bilateral sensorineural hearing loss. We like to think of ourselves as part of a special group of people – the ones who have no family history of hearing loss and yet, we have two children who have been diagnosed with it.
Seven years ago I would have never given a second thought to a lot of things that occupy my thoughts now, from background noise to preferential seating and more. It is interesting to think back at how different life was then–how few people I really knew, how dramatically my thought process has changed and how I would never speak in front of people or start conversations with strangers. Last summer I stalked a family at an amusement park because I saw their college age children wearing cochlear implants and I had questions to ask. So, I caught up with them and quizzed them. I’ve also been known to stop people in grocery stores, toy stores, and airports. My cell phone number has been shared with people across the country. There is a bond between our families that exists even if we’ve never met in person. I see an intense desire in myself and other parents to connect and learn from each other.
Having children with hearing loss creates a filter of my worldview that changes everything. We recently sat in a church service and whereas most visitors would critique the style of music and evaluate the pastor’s teaching, I have a different viewpoint. I wondered why the music was so loud, if the sound quality was good enough for my girls to understand it and why in the world there was background music played during the sermon. I thought it was great to have the words to all songs on a screen, as well as other notes from the sermon.
In the world of education, I have gone from hoping that we get a “good” teacher in school to thinking about the long list of specific qualities we need – understanding and willingness to learn about hearing loss, compassion, someone who isn’t overwhelmed by technology and is not afraid to troubleshoot problems, and of course the main point: someone who will be a good teacher and provide the education needed. I worry about social issues – like every parent - and I wonder if my child might be having issues because of her hearing loss or because she isn’t likable. Naturally, as a mom, I choose to blame hearing loss - because why would anyone find my charming (but bossy) and sweet (but strong-willed) children not likable?
There are so many new ways of thinking we have experienced. When our children received their diagnoses, our family made the choice to have hearing aids worn by our girls. Our oldest was almost three when she was diagnosed with her mild to moderate loss. Our middle child was one when she received the same diagnosis. We weren’t looking for this diagnosis with our oldest but because of her journey, we were diligent about having our second and third daughters evaluated. When the girls’ hearing loss progressed to profound deafness (at age seven for our oldest and age four for our middle child,) we opted for them to receive cochlear implants. This is not a decision that was made lightly and there were many questions asked – and not all of them were asked of strangers on vacation. We chose to have cochlear implants bilaterally for both girls – a good choice for them but not an easy one. We reached out to many professionals who took our family in as their own, who were patient with our non-stop and often repetitive questions and who pointed us to other families when we needed someone who was living what we were living. I have a very close extended family that enjoys being together and seven years ago, I would have told you that our family was “enough” for us. However, since that time, we’ve added our audiologists and speech therapists and others to our ‘family’ and without them our family would be incomplete.
So, in the midst of all of our new ways of thinking, who thinks about ears and why it is good to be thankful for only two of them? As a mom who believes that a cochlear implant is the best option for her child but still has to sit through a “routine” surgery waiting to see her baby, I’m grateful for only four surgeries. For a parent, implant (or any) surgery is never routine. Two little girls, four different surgeries, four times to see little heads wrapped up in bandages, four times to anticipate and experience initial activation and four times to live through the “learning to hear in a different way” process. I would not trade any of those four times because of the success we’ve experienced but that doesn’t stop me from being thankful for no additional ears.
We are currently a family of five pairs of ears (our third daughter seems to hear even things she isn’t supposed to) – some use equipment on their ears and some do not. We have selective hearing issues and communication breakdowns with those who wear equipment and with those who do not. We laugh, have fun, get angry, tease each other, have serious discussions – and we repeat ourselves A LOT. We are a “normal” family with the uncommon distinction of knowing to be thankful for only two ears per person. ~