‘Something felt off. With my gown tied in the back and birthing underpants peeking through, I shuffled in search of my baby.’: Mom shares journey of having 2 partially deaf children, ‘They are so much more than I imagined’

“Parenthood is a funny thing. We dream, we plan, and we form an idea of what our children will one day be like. However, no matter who you are, most of the time, our children are very different from what we pictured in our mind. With time, we discover that our children have their own passions and gifts and ideas. We learn that they are so much more than anything we could have ever imagined.

At least, that is what I have discovered. Our family of five is very typical in many ways. We love living room dance parties, paddle boarding, and snuggling on the couch eating popcorn, and watching movies. My husband is a mental health therapist, and I am a school counselor. On the other hand though, our family is pretty atypical. We are learning to navigate in this world with two partially deaf children.

Our hearing loss story starts the day our second child was born. The night of his incredible and healthy birth they took him to get all his screenings – vision, hearing, etc. When he didn’t come back after an hour, I started to feel the deep pumping of my heart. Maybe it was mother’s instinct or maybe it was the hormones, but something felt off. So, in my hospital gown tied in the back and my birthing underpants peeking through, I shuffled out of our hospital room in search of my baby boy. Within minutes they came back with him swaddled and sleeping. Relief fell over me as my beautiful healthy boy was placed back into my arms. However, within minutes my racing heart would turn back on as we were told that my very perfectly healthy child did not pass his newborn hearing screening test. That night as we processed more of what this could mean for our family, I cried deep hard sobs as I nursed my precious newborn.

At the time, we knew nothing about hearing loss. Our first son was born hearing. Neither my husband nor I knew a single soul that wore hearing aids outside of a few elderly family members. The unknown was unnerving and often threw me into moments of panic. What would this mean for his future, what are hearing aids, will he need to use sign language, how are we going to afford all this?

Like all things that feel like mountains to climb in the beginning, with each step up we uncover our hidden strength. We figure out what we truly are made of. So, with each new day, we began to learn about audiograms and ABR testing and hearing itinerants. We didn’t know there was a spectrum of hearing loss that ranges from mild to moderate, to severe to profound. Severe to profound often meant that you were deaf. I would later learn that there is a significant difference between big ‘D’ Deaf and little ‘d’ deaf.

Hearing loss is a low incidence disability that can leave a family feeling pretty isolated and alone. So, one night I jumped online in search of other families – other stories of children born with hearing loss. I was desperate to find anything that would diminish the fear building in me and dampen my anxiety. I was searching for hope. But what I didn’t realize was that no matter how hard I searched, I could not see my child’s future. I was going to have to live it, right next to him. Nobody is going to come and take this away from us. We needed to embrace our situation. For that to happen, I knew that I was going to do the hard work personally to process the grief and anxiety I was feeling so my child didn’t unintentionally take on my unprocessed baggage. So, I did what I could. I went to therapy, got into support groups, and asked as many questions as I could. Mindfulness and deep breathing became helpful tools.

Fast forward years later. I now sit here with my incredibly funny, adventurous, and sweet 8 year old son. He wears two super sleek black hearing aids with green swirl ear molds. He also has a little sister, age 4, who also wears two adorable white hearing aids with sparkly pink ear molds.

With time, processing and growth, I have learned that not only is life okay, it’s pretty dang awesome. I am a better person, more attune and alive. Yes, life is not typical. There are often added responsibilities and stressors. We have more appointments that need to be had. Hearing technology that needs to be checked, taken care of, and protected. We have to accommodate by getting their attention first, having them come closer to us to communicate and use extra technology like the Roger Touchscreen Microphone. As our children grow, we have to adjust; pivot to what their specific needs are. However, in all the ways that matter, our lives are so very full of joy. I am amazed by all of my children. Not just despite their hearing loss, but because of who they are as little individuals.

My son plays soccer, attends basketball camps, and even did a hip-hop class. He loves to draw Godzilla and create legos and play Nerf guns with his best friends. He swims, does front flips off the diving board, and reads like a champ. He speaks, sings, and makes jokes so funny we cry with laughter. He writes deep imaginative stories and asks us the most inquisitive questions.

Our daughter is feisty, passionate, and full of emotion. She loves to ride her bike, play barbies, dance class, and play with her friends from school. She loves to create outfits of her own to show off her style. Daily, my husband and I look at each other in amazement at her sweetness. She tells me all the time she loves me and sings her heart out on the top of our coffee table like she is a performing rock star.

I share these things because, in my ignorance and grief, I couldn’t imagine any of these simple and incredible moments. I was scared and grieving a life I had imagined. As parents, I believe that the sooner we let go of what we have imagined for our children, even in our best intentions, and start sitting back and embracing who our children are, will be amazed by the joy that fills our hearts.”