One Families Journey:
Conducting the Sweetest Sound
Editor’s Note: This is Part 1 of the Conductive Loss Journey Story. Read Part 2 here.
A mother’s mind is never going to feel safe - how do I know that I am not in that small minority of parents whose child’s permanent conductive hearing loss can not be improved by medical procedures?
When we first heard that our baby had a hearing loss, we felt shock, grief and deep sadness as we looked at our beautiful and mysterious son, Jasper. Soon, those feelings were swept away as the onslaught of professionals and volunteers advised and suggested what to do. As we are sure most parents have felt, we were overwhelmed and fearful about the future in those first two weeks. There were so many questions. Uppermost in our minds was this one – what type of hearing loss does he have? At two months old, our son’s first Christmas present was a battery of tests to determine the type and degree of loss. Prior to his appearance in our lives, we had naively assumed that there was only one kind of deafness or hearing loss. We were about to be astounded by how many different types of hearing loss exist.
Like many parents these days, we immediately headed to the web when we received the diagnosis. We hoped to find and understand all of our different options so that we could ponder our next step. Explaining Jasper’s hearing loss to the grandparents was painful at best, despite the fact that my son’s grandfather and my son both require hearing aids. It was surreal to suddenly be the expert on hearing loss to our families. In fact it quickly became a full-time job fielding all the confusing questions. As we in time got connected and received some help and support from local agencies, we hoped to soon be surrounded by other perplexed parents with similar concerns. I personally hoped to find parents that also hungered to see their child soak up the arts or longed to hear their child say “Mom.” I couldn’t wait to share and express to others who “really get it” that my son couldn’t hear my voice. Music has always been important to me. While I am no American Idol candidate, music touches and moves me deeply. I had always envisioned teaching and sharing both special and silly songs with my son.
I met some mothers soon after and appreciated their help, their smiles and their encouragement. Eagerly I listened to their stories, looking to find the one that could best relate to me. I tried, but all those who shared had children with sensorineural loss. I felt alone and alien, to be a rare one even in the rare world of hearing loss at the get-togethers. The two types of hearing loss are quite different in how they are addressed and especially in how they can affect the child long term. It took a while to figure out how to succinctly explain the type of hearing loss my child has. It took even longer to accept that there were very few parents of a child with a conductive loss. I am very grateful and genuinely happy for how much support parents of sensorineural loss can provide to one another since it seems to be more frequent. However, there are some experiences that connect them to each other as parents that I can never fully appreciate. In return there is much that I need help with that they can’t relate to in the specifics of our situation.
I went to “Guru Google” to explain what permanent conductive loss is – “an impairment of hearing due to failure of the sound waves to reach the inner ear through the normal air conduction channels of the outer and middle ear.” So the conch shell of the pinna, or outer ear, catches the sound and channels it through the ear drum to the three bones we all memorized in elementary school… and somewhere in that system lies the root of a conductive loss. Conductive loss may be due to something as simple as earwax but that is not true for my son. He was born with full ear canals and (as far as we know) functional eardrums. However, his ear canals are too narrow and make a sharp turn. His doctors can only guess at how the sound gets lost. How this happens has been puzzling since the quiet moment when they told us he had a hearing loss. At birth, he heard the most extraordinary things, a fork clanging, melodies -- and not just rhythmic beats in a song. Now as a vibrant roving two year old, he makes it clear that he hears and understands me even when I verbalize and do not sign, even sometimes when does not wear his aid. For example, when he is tired, he hates to be anywhere but in my arms, and as usual one time I had to put him down to do laundry. I always tell him what I am doing even when I have no sign memorized for it and its all verbal. I hadn’t even made a motion to put him down – that could have been a non-verbal to him- all I said out loud was “in a moment jasper mommy will have to put you down,” and at that point he started digging frantically into my chest and clinging like a baby monkey. It surprised and delighted me that without any nonverbal clues or signs, he completely heard and reacted almost as a hearing child would. These moments are confusing as well as joyous – for really, what does he hear? So here I am googling the Net, wading through the all the technical information until I am in an Escher painting: I keep climbing but have no clue how close I am to finally finishing the puzzle. It would have been more helpful if someone would hand me a box with the outcome pictured so I could get it right!
Google, always comforting in the past, has delighted in confounding me further. Several websites describe as “rare” my son’s permanent conductive loss, and others note its existence but offer zero information on how to get help or what can be done. All that is said are vaguely inspiring words to the effect of “can be improved medically” accompanied by the sinister “usually” along side its encouragement. A mother’s mind is never going to feel safe - how do I know that I am not in that small minority of parents whose child’s permanent conductive hearing loss can not be improved by medical procedures? As best as I understand it, conductive loss effects the outer and middle ear and a child can be affected in both or either from a mild to a profound degree. Jasper has a bilateral permanent conductive hearing loss in the moderate range. After the initial relief that his nerves are fine, my heart then leaps to many concerns: what does this mean for the future? What is medically possible? And what is safe in that realm? Who can I talk to who has been down this road? Would I ever hear him say mama or even see him sign it? With these kinds of “hearing moments”, why does his language lag an ocean behind his hearing buddies, an ocean that that separates an already introverted child further from some great relationships? And how can I talk to him about love and grace and matters of the heart?
Every website I have found has information about sensorineural loss because others before me have done a good job researching and sharing information. These sites provide a foundation for parents to meet, share, help and support one another. I applaud and thank all of you who worked so hard for this. I make no claim on the numbers of children with a permanent conductive hearing loss, but my own experiences teaches me that it is more likely to be fewer in number, even more rare. I invite professionals and parents alike to learn from one another and to bridge the gap in information. I would like to hear your stories and concerns on what is like to raise a child with permanent conductive hearing loss.
Let’s listen, share and journey together as we build a respectful community. We can start a thread on the bulletin boards at Hands and Voices or I would welcome anyone who wishes to share at the following email address: email@example.com. My son, Jasper, and now my hearing NICU graduate daughter, Elani, and myself would love to listen and share with you how they have trained their mama to listen to them. And I would love to share how recently my son expresses himself verbally. At last, in all the confusion, my heart hears a sweet song as he falls asleep to a lullaby I sing, and I hear him call me “mama”. ~
Editor’s Note: This is Part One of the Conductive Loss Journey Story. Read Part Two here.