When my son, Rhys, was two years old, he contracted Bacterial Meningitis that presented uncharacteristically. Unfortunately, it also coupled with an infection of his brain and sepsis of the blood.
We’re not sure at what point it happened, but his fevers from the infections lead to a rapid ossification of the cochlear; the liquid that usually carries sound turning to bone.
Within a couple of weeks of getting him home from the ICU, we noticed he was using less and less of his formerly known speech and language and retreating into what he called “his bubble.”
When we did a couple of “home experiments”, such as using the blender he usually hated the sound of and tried to get his attention without him looking, we instinctively knew we were in the starting blocks of a very scary and surreal journey.
His profound and sudden hearing loss was confirmed the following week, which saw us pushed up the waiting list at SickKids and so started his journey with cochlear implants…with us as very naïve and unaware passengers.
We’ve learned to laugh our way through the long list of unexpected twists and turns, but here are the things I’ve learned along the way.
This is a completely normal and acceptable response to the confirmation of your child’s hearing loss. For us, we thought there was absolutely no way he could be so lucky to survive his meningitis, only to be hit with this life-altering diagnosis.
As hearing parents, Rhys’ diagnosis was terrifying. I went into flight mode and a state of overwhelmed panic not knowing anything about the Deaf community or where to start.
Denial is normal. But don’t stop there. You’re not alone and the resources are endless. You just need to take it one small step at a time.
Waiting, mapping, and holding.
Nothing, and I mean NOTHING about this process is fast. While the initial diagnosis may be, there is a lot of waiting and troubleshooting between audiology mappings.
There’s also a lot of sitting on the phone with implant companies to order replacement parts, especially if you have a deaf toddler who is VERY hard on his equipment.
When a patient receives cochlear implants, there’s usually a month’s wait between the operation and “activation day,” the day when the external devices are attached to the internal magnets and the recipient’s ears get “switched on.”)
The month after implantation feels like it’s never going to end, and for us, the additional risk of infection meant an almost obsessive checking of the operation sites.
We did have some very cute swollen ears to giggle at while we waited but, unfortunately, we didn’t get the emotional reaction to our voices you often see on YouTube.
For Rhys, activation day was a little bit scary and full of lots of frustrated tears. A totally “normal” and much more typical response, this was the first of many things about this journey that we’ve learned are unpredictable and often very much “Instagram vs reality” moments.
You’ll never really know it all.
You can learn about how microscopic electrodes now carry sound to his cochlear and how to Bluetooth him into the TV for direct sound. You’ll have new reminders set on your phone to remember to charge his ears at the end of the day and you’ll still laugh at how bizarre that sounds when you say it out loud.
You’ll learn a lot of things you never could have anticipated having to know…but you still won’t know it all. We still don’t know exactly what it’s like for him to hear sound. According to adult cochlear users, the sound is quite “mechanical” or “cartoon-like.”
But until he’s older and has a way of communicating that with us, and even then, we will never truly know how things sound or what he hears when his devices are off his head, and he exists in his profoundly deaf world.
Oh, the places you’ll go (in search of devices) and the crazy things you’ll say…
“Where are your ears?” and, “Please don’t chew your ears.”; statements our neighbors are probably quite confused about hearing us say over the fence.
We’ve said some pretty hilarious things in the last few years, tried every retention device to keep his implants on his head, and have been on many a search for devices that have been hidden in the freezer, thrown into the hot tub, and boiled with the morning eggs for breakfast.
Being a parent to a cochlear-implant-wearing child is a never-ending adventure that I could likely, and will likely, speak and write about until the end of time.
As the ever-evolving technology advances, so does he. But more so, so do we. We learn and let him lead us in what he needs and while we do that, we’re always looking to connect with other cochlear implant kids and families because CI kids are the coolest and as the hashtag says, #deafkidsrock for real.
Christine Murray is a Zimbabwean-born, South-African raised, Irish-passport holding Canadian raising tiny tornadoes in the form of two cute brothers in Burlington, Ontario.
She is a photographer, writer, and content creator constantly in search of stories to share in any way, shape, or form. S
he shares more about the ever-evolving adventure that is special needs parenting at @paperplanesandpeaches on Instagram, where she practices positivity daily and hopes to help other parents find the joy in the imperfect, messy middle.
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