“I have learned through this journey that community and knowledge are key to working through fear of the unknown.”
Both my children were born with a recessive genetic hearing loss which caused them to lose their hearing in one ear each during their toddler years. We are unsure if the hearing loss will continue and affect the other ear as well.
We have been on a life-altering journey that has opened up our eyes and introduced us to the Deaf community. Our family is actively learning American Sign Language (ASL) and after much deliberation, we have decided to get Frankie a cochlear implant for her left ear, as she has no usable hearing left. This was a difficult choice, as it is a lifelong affecting decision.
I decided to use the sign for “I love you” when I first found out my children would possibly go entirely deaf, the first thought that passed my mind was exactly that. My biggest fear was that they would not be able to hear the words “I love you”, especially while experiencing something as scary as losing their hearing. This is what inspired us to start learning American Sign Language. It has opened our minds and hearts to a whole new community.
I also created a pendant to help create awareness for hearing loss and help Frankie & Colton feel supported by the community around them because 1 in 1000 babies is born with hearing loss. Most deaf babies are born to parents who have never met a deaf person in their life. I have learned through this journey that community and knowledge are key to working through fear of the unknown.
To help me cope, I learned sign language. I researched genetics. We travelled to Maryland & Toronto (over 10 times) to get a cochlear implant for my daughter. We paid $16,000 privately for the surgery and device. I practiced resilience by embracing our new normal. For me, taking action and accepting that I had to mourn the hearing loss for my children. I experienced grief and gave myself time to mourn this loss.
Colton & Frankie are healthy, intelligent, thriving toddlers. They inspire me daily by embracing a visual language and not letting their single-sided deafness hold them back. We will be going to the hospital for Sick Children in Toronto traveling across the country from Squamish BC. The surgery will take around four hours and is not covered by the BC healthcare system. We will be paying privately for the device and all travel costs. We will travel to Ontario nine times over the next 18-months for follow up care.
Thank you for supporting our family during our hearing loss journey, it is tremendously appreciated.
Love and light Justine, Adam, Colton, and Frankie xoxox
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