The story from a parent of two kids with hearing loss is about two children in a family and includes progressive to profound level hearing.
My happily ever after never included having a deaf child, let alone two, or at least I had never thought it would. But it does. No one else in my family has different hearing levels so it came as quite a shock to find out that my son (and later my second son) had significantly different hearing levels. However, no amount of shock or denial was going to change it; I knew that I had a journey ahead but I had no idea how it would look.
My oldest son Emerson experienced a rapid decrease in his hearing levels at a very young age. We knew we had to get connected with an intervention agency and quickly made our choice. I’ll admit our choice was based on what was closest, but I figured we could always change later if needed!
Although Emerson initially benefited from hearing aids, by the age of two he had profound hearing levels in both ears. We had a decision to make and it wasn’t an easy one. In the end, we proceeded to get him a cochlear implant, followed by a second implant one year later. In the initial months it was a fight to keep the aids and CIs on, and then later a fight to take them off. Emerson has a will of his own and it took a lot of persistence and support to get him where he is today. But seven years later, as he enters Grade 2, he is well on his way with his hearing peers reading, speaking, and performing at grade level in all areas.
At the same time that Emerson’s hearing levels changed to profound, I was five months pregnant. We were aware that we had a one in four chance that our second child would also have different hearing levels. So when Grant was born I was happy to find out that he had “normal” hearing. Even so, our audiologist kept a close eye on him with regular assessments (as we did at home, knowing that the type of hearing loss we have is progressive). To be honest, I never let myself trust that he was going to keep his hearing. Then it happened. I remember, sometime just after his first birthday, something in the way he was responding began to change. “Here we go again,” I thought but without sadness. However, I still didn’t want to “break the news” to my husband. For a couple of weeks I pondered silently, then one day my husband and I were out for lunch with Grant (while Emerson was visiting his Grandparents) and I suddenly blurted, “I think Grant’s hearing has dropped.” My husband agreed. Turns out he had been thinking the same thing but neither of us wanted to “break the news” to the other. We actually had a great laugh. In a way I was relieved; now they would have each other and could share their journeys. I also found it comforting that I already knew what to do. Within a month, Grant was at BC Children’s Hospital for a sedated hearing test. The hearing levels were confirmed and I asked them to make an ear mould right then and there. An hour and half later when we arrived home, our local audiologist had already left a message and next thing we knew we were online picking out the colour for Grant’s little hearing aid (cobalt blue). It was so tiny! By two o’clock, the hearing aid was ordered and the mould was sent off to be made.
I never experienced the same grief for Grant as I did with my first though it was a loss just the same. To be honest, I felt a little cheated; I would never know parenting without hearing loss. But still, this time I knew it was going to be okay. He was going to be okay and so were we. Grant has continued to need more powerful aids and as he enters Kindergarten at the same school as his brother, we are now on our journey for him to be implanted too.
The boys are seven and five now. They are typical boys, typical brothers. They wrestle and knock off each others’ hearing equipment, then pause while they hook it back on or slip the magnet back into place. They get frustrated with each other when someone isn’t listening or is being too noisy (which always makes me smile!). Together the boys have come to understand how best to communicate with one another. In the morning, Grant often comes to the living room and gives Emerson his Implants and his own hearing aid to put on. Emerson now understands that Grant needs to sit in the middle seat of the van to optimize his hearing.
Though the initial journey was tough, our family is blessed with a very supportive network of friends and family, audiologists, doctors, and ENTs, and of course everyone at our early interventionist agency. Through years of tears and laughter, I feel as though everyone has helped my family grow as we continue onto the next leg of our journey.