Shape of the Future
Ocean waves are rather like worries, they come in, dump muck in your lap and recede, only to find another wave shortly on the heels of the receding wave ready to dump some more treasure. I am a bit of an expert at worries. What I hate the most about worries is when the waves are big enough to knock down a beautiful sand castle being built on the beach. Nice weather, plenty of sand, a great start to possibly the best sand castle ever, and along comes a giant beautiful wave—smoosh—washed away to a blank sand canvas. Planning the future around having kids is also filled with waves of worries and blank sand canvases.
I imagined our journey as we waited for the birth of our first child: certainly there would be ups and downs we well as things I could not control--but somehow I imagined with creativity and faith we would arrive at a beautiful destination. After Jasper was born, and he was diagnosed at one month old with bilateral conductive hearing loss, his future was a blank canvas. He tested at a moderate/moderate severe (about 55-70 dbh) as a newborn. With conductive losses, there are a myriad of choices to consider: perhaps Jasper’s ear canals would widen naturally on their own, wearing a BAHA softband, implanting a BAHA surgical aid, ear reconstruction, or possible future conductive implants. Then, the shape of the future could only be seen one turn at a time but of all the choices we wanted was the one with the most flexibility.
And as our journey of overwhelming information that pushed even me( a fairly decent scholar with a high toleration for long winded words) a bit towards brain overload, it was my heart that kept me grounded to what I really wanted. What I really wanted was to be certain that he heard, if he could, but more importantly understood what “I love you” meant, and that when said, it would be for real! I wanted nothing to impede our connection with him whether because he or I did not know enough sign or him not fully hearing the sounds. I preferred sounds, I was lulled by sounds, my greatest moments have a sound deeply attached to them, the first time I heard my husband drawl slightly and a spark passed between us. Sounds of names, sounds of waterfalls, sounds of “tears hitting the floor” bring back strong memories that stir my spirit.
To know that he lived in a soundless world, (bear with me here, I mean no offense to anyone at all) created within me initially feelings of grief and yet I wanted also to love this child. I wanted this lack of sound to have no change on how I would treat him. I always wanted to be such a loving parent that I would accept and love him as he is - a gift - in all that he is and can be. Jasper was only months old and at the time we had only been married a little over a year, he came home from the hospital a few days before our first year anniversary. Both of our families lived in another state and in our small but good hearted church we were the first to have child born with deafness. There was no Nebraska H&V chapter yet at that time, no playgroup that I would later facilitate. In the few events I found, no one had a child with a conductive loss and no parent yet had a child under three. So we were essentially on our own.
I did what I have found common in other parents – in daytime, I was supermom and in the night, I was super sad, mad at myself for even feeling grief, mad at randomness that he was “gifted” by this situation and felt so alone at knowing how to handle it.
Eventually, as a part of making daily decisions & communicating with our families, we began to feel somewhat normal in this journey. Especially, as we began to build relationships with others in the deaf community, I was thankful and even grateful to move from those early days of wanting to “rip off his hearing aid so I could just be a regular mom” to “I am so glad this happened to us.” I was finally able to embrace all of him. I could open my eyes and hear his paintbrush sing on the page, and to marvel at the cute baby way of his first signing “help”. I started to relax and rock him to sleep; trusting that the love I sang went right into his open heart! Our family identity as well as my own personal identity crystallized and formed into deep grooves of joy when Nebraska Hands & Voices became official. I had found my own voice and reached out to help others. As my confidence grew, so did my son’s. When preschool began, he met other kids with other types of aids, did art and drummed with them. I met and chatted with other moms and started to feel a sense of belonging I had always craved. Several family crises came, were handled and continued to mold our family identity. I started the playgroup, both wanting it for myself and hopeful that it would help others as well. Soon, it was Jasper’s fifth birthday and as always life was: chaotic, learning, fascinating, IEP creating, artistic supporting, let’s get the social piece in place. Crazy world. Our world, but knowable.
And then, just like his ear canals, our future was not fully formed, and the shape of our future has changed once again.
We went to see our wonderful ENT, for a routine check in the ears for Jasper, then saw his audiologist in the sound booth. Jasper wears a bilateral bone conduction aid due to narrowing in his ear canals along with an unusual sharp turn in the shape of the ears. His ear canals are extremely narrow, one ear narrower than the other making it difficult to discern how the middle ear is being formed. Middle ear malformations are another reason for conductive loss and each visit we learn that his are forming normally. Dr. Lusk reported just that as far as he could see, and we were off to the soundbooth. I would keep a good poker face and give Jasper no hints. Kendall planned to test him in the soundfield unaided (and without the inserts that end up physically widening his canals) as well as with the aid turned on. Being tested in the soundfield equates to when he was first tested as a baby, with no inserts or aids yet. Kendall did her tests and Jasper happily gave her the most consistent answers he had ever given. Like always, the audiologist and I discuss the testing results together before we leave.
I honestly don’t remember her exact words. The long and short of it was that unaided, in the soundfield alone, with no kind of technical support whatever, Jasper’s ears had actually grown enough so that he is hearing at a level of 25-45 dB, reclassifying him from a moderate to severe to a mild hearing loss. The first time I shared the news with a friend, it felt like a dream, it was someone else saying it. I experienced disbelief for several days. I was astonished. I was in a place of denial (sound familiar – denial is often a first stage of grieving). It took quite a while for me to be ready to even tell my husband. I didn‘t want to tell him unless it was real.
When I did tell him, I made sure he knew it was her words, as if I couldn’t really believe it for myself. I felt silly and embarrassed to find myself calling the audiologist the next morning and asking her to confirm that not only have his ears grown but that his audiogram wasn’t a mistake. I needed to hear her voice tell me again that the testing was consistent and could be trusted before I shared this with my whole world. When she confirmed Jasper really is in the mild range now, I remember being so happy, and yet wary. Wary that I still needed to be careful with speech, happy and joyful at what shape the future could hold for us.When I finally embraced it, I found great joy and thankfulness for all the times he earlier couldn’t hear as well and as well as all the times now he did hear differently– I found it was all great! (Hmm… embracing reality is the second stage of grief.)
And then I had the most extraordinary reaction, I was angry! Yes that’s right folks – Angry! Tear my heart out, feeling frustrated, sad and angry! What did I have to be angry about, my children are wonderful, we have a house, we love each other, and my child’s hearing is naturally improving without surgery– why was I so angry? Yet I was, there was no denying it – my heart knew the truth. I was angry because I finally had gotten a sense of what homeschooling for Jasper and his moderate hearing loss. I finally felt like we were in a groove for homeschooling, our family and our sense of identity. Especially I felt I was personally in a groove of how to be helpful to Nebraska Hands & Voices. This surprise was throwing me all out of sequence, I had just gotten our lives together over five good but long years, and now there was new weather on the horizon.
I also felt deep sense of guilt, so many of my friends had situations that required so much more attention than I had to give Jasper. And many people online have written about painful situations that usually get worse, who was I to have his situation improve? I experienced a wave of fear that others might conclude that I could be no help to them nor still understand at some sort of level. Where did I belong now? I was a woman who had a son with deafness---usually bonding between parents-- but now I have a son who is slowly imperceptibly losing his hearing loss? Would the deaf adults I know and respect trust that I still treasure their deafness as much as I treasure his ability to hear more and more? Then I jump to such practical things as what about his IEP? Would the district claim he no longer needed speech, something that has helped him so much? He still comes across as a little kid who just might be bluffing more than anyone realizes, especially as children with mild losses can probably hide their bluffing better. Age five is such a critical age to practice social skills before Jasper would just be expected to know the social rules and fit in. He needs that time to have the rules spelled out and to practice them.
Soon, however, my anger and fear and guilt was resolved through several honest talks with many friends, both with hearing and deaf/hard of hearing children, who reassured me that they would be my friends still. Support, as with all parenting, is vital to embracing the journey of raising Jasper.
Now, I have a new passion and a new hunger: information for my new mission - mild hearing loss. I have already come across online information suggesting a huge lack of emphasis amongst professionals on the significance of mild hearing loss. Several articles seemed to imply mild hearing loss can be considered by professionals and schools as less important because of the word “mild.” But probably the biggest question has been the thought – hasn’t this happened to someone before? Probably, but I can’t find anything! I can’t find written case studies about this natural process of ear canals widening enough to change hearing loss levels. Other concerns surface as well: What happens if he doesn’t need to wear his equipment but wants to? Or if later he chooses to sign only so should we keep up with sign? My sense of belonging with Hands & Voices also feels shaken - where do I belong now? I would love to discern, find and unite those of us with children with mild loss and see if in our commonality we could make some universal, national or state changes to benefit our children. Please connect with me if you share this interest..
However, the most important thing I can probably end on is this simple truth: when he was born moderate hearing loss, it was a gift. When he learned sign and we embraced it; that was a gift. All the people we met along a way and who inspired us: they were all a gift. Whatever I can give to H&V is a gift from heart. Sharing our stories in the Communicator: that is a gift and always therapeutic for me to write and to read the stories of others. And this too, this recent amazement--his ears opening up-- this is gift. The wave has receded so it’s back to building the new sand castle. I found a new beautiful stone the tide brought it. I can use it for a worry stone and rub it the next time a wave comes in – an opportune gift for my worrying mind.
Everything is a gift. Enjoy your present; it is a gift just as we have enjoyed ours! What’s in your gift box?