It’s 6:15am, and I tiptoe across the bedroom he shares with his older brother to wake him from a deep sleep. His clothes are already set aside and dry cereal and juice are waiting in the van. He gets dressed as I sign to him to go to the bathroom before the two-hour drive to see his audiologist. It’s a familiar routine for him.

I think he’ll fall back asleep, but he stares out the window as the sun hints at rising. I glance at him through my rearview mirror, wondering what his thoughts are. Wondering what silence sounds like.

I catch his eye and put my hand up to sign “I love you.” He breaks the silence by asking for his sound processor, which I had carefully tucked away in the seat next to me for when he was ready for it.

Hearing. It’s always been obvious that was his preference. A trip to the Dry ‘N Store box is typically the first thing he does in the mornings.

It’s what makes the recent sudden significant drop on his audiogram unwelcome. 

From three to 20 months of age, he wore hearing aids. He then received a cochlear implant in his left ear, so in his memory, that’s all he has known–one hearing aid and one cochlear implant. But a recent hit to the head while wrestling with his brother took what hearing remained in his aided ear.

Two weeks prior, we sat in the soundbooth and received the news that his severe-moderate hearing loss had now bottomed out on his audiogram. Knowing he had a progressive type of hearing loss, (Pendred syndrome with EVA or enlarged vestibular aqueducts), I thought I would be ready for this moment if or when it came. I was wrong; I cried. I had grown comfortable in our journey we had been on for seven years.

Some of the same questions that visited me in the beginning began to resurface. Could this have been prevented? What will this mean for his future? WHAT DO WE DO NOW?

I used to liken every doctor’s visit to ripping off a Band-Aid. You think you’re healed, but in reality, the wound is still there. At this point, the wound heals a lot faster, but I’d be lying if I said it didn’t still hurt. I grieve for what has been lost and for the routine we had established. I allow myself to be vulnerable; it’s an odd change because as a Parent Guide, I’m usually the one offering advice and support. I’m reminded that we all still need that at different stages!

The grief doesn’t last long. I now feel more comfortable navigating the systems. I know some of the questions to ask and where to go for answers. I also know to whom to turn – a whole village of other parents, both near and far, who understand and can share their experiences, as well as a team of professionals who I also call friends. A refreshing comfort in the midst of change.

We are currently exploring this next phase of our journey, with Isaac helping to guide us. Of course, there is so much uncertainty given back to school scenarios with new teachers, IEP modifications and mask requirements, but I am confident that Isaac will show us the way. He already has.   ~

Editor’s note: Sarah Roof is the Executive Director and Guide By Your Side Coordinator for Kentucky Hands & Voices.

H&V – Winter 2021