Posted on 09/09/2016

“It takes a whole village to raise a child.”   -Igbo & Yoruba proverb (Nigeria)

I remember the day our son didn’t pass his newborn hearing screening. I sat on the floor of his hospital room staring at his crib. It felt like the air was being sucked from the room. I knew I should be happy that he was getting stronger and that, after more than 30 days in the hospital, we were most likely going home the next day. My brain knew he would be ok and that we had a strong support network that would help, but my heart was falling into the kind of panic where time stands still and all rational thought stops. Before I realized it, I had dialed a number that I had dialed many times before.

“Val, Parker failed his newborn hearing test.”  

Through the silence on the other end I heard a simple, “I’m so sorry.”

And then there were tears… from both of us.  The next words from my mouth were a steady and uncontrolled stream of “he-won’t-evers”.  He won’t ever hear me say I love you; won’t ever make friends; won’t ever drive a car, go to school, have a job, fall in love and on and on. Val listened and she didn’t object or interrupt.  She knew that the reality was that Parker would be fine. She knew we had a great support network. She knew deaf adults who had done all of these things and more.  She knew deaf and hard of hearing children who were very social and performed well in school. She also knew it wasn’t what I needed to hear right then. What I needed was to grieve; to let out all of my fears so that I could begin to think clearly and begin to build a plan. Val was the start of our village before I even knew that we would need or want a village.

According to the National Institute of Health, 2-3 in every 1,000 children born each year will be diagnosed with some form of hearing loss. More than 90% of these children will be born to parents with no family history of hearing loss. What were the chances that one of my best friends would also have a profoundly deaf child? I certainly didn’t know it when I met her several years before. At that time we were simply new neighbors, one of whom had her “infant with a questionable hearing diagnosis” sleeping peacefully through our introductions.  Neither of us knew it at the time, but this tiny person bundled in a sling on her mom’s chest would become our most adorable little deaf ambassador, Maya. How lucky were we that we already knew that a deaf child could grow to be a spunky, fiercely strong willed and exceptionally articulate little lady who just happens to be deaf? We didn’t know it at the time, but we had won the village lottery!

Let’s face it; raising developmentally typical children is hard, but I would argue that sometimes raising deaf children is just a little bit harder. I remember cringing as my friends with developmentally typical children rattled off language milestones their children had breezed past while my son had yet to achieve the basics. I remember walking out of our first meeting with CDS, where they had listed everything Parker couldn’t do yet, and crying in my car. I remember feeling like our friends with developmentally typical children sometimes just didn’t “get it” when we declined play dates because it was too hard on us to facilitate or feeling attacked when well meaning family members asked about his speech and his hearing. There were times when we felt we had to isolate ourselves just to take a break from explaining Parker’s hearing loss and how it impacts everything we do. These were the times that I felt the most isolated, but then I would remember Val… and Maya… and in one phone call would be reminded of all the reasons why Parker will be just fine. I realize that we are so lucky to have family and friends that love our son and take interest in his needs. This incredible network is not lost on me, but sometimes you just need a break from teaching others about your child’s hearing loss. I have learned that these are the times we need to lean on our village.

On August 25th, we gathered for an evening of sharing on Mackworth Island.  We heard from professionals and deaf adults about helping our children reach their full potential, but then, as we always do, we just visited.  Families shared triumphs and fears about hurdles yet to be cleared. We chatted about social skills, insurance, acoustics, therapies, and back to school. Our children all have different types of hearing loss, assistive technology, and communication preferences and none of that mattered.

We might all walk different paths, but each of us wants the best for our children and this is what makes our village thrive. When we are tired or feeling isolated, this village provides strength and partnership. When we are at a crossroads, this village listens and supports without judgment. Our children have become peers, and in many cases, the best of friends. They mirror each other in many ways and they diverge onto separate paths in other ways. They know they aren’t the only deaf or hard of hearing child in the world because their families have each other. They all know that being different and in some ways being the same is what makes them special and when we come together, there is magic.

Be sure to check back to this blog frequently and follow our facebook page for more opportunities to connect with our village!

~Katie W.- Parent Board Member

~ Val D.- founding member of Maine Hands & Voices