This is Colton and Frankie (and Justine) and THEY ARE RESILIENT.
Describe the situation where you had to be resilient:
I learned that both my children were developing profound hearing loss and going deaf.
Justine’s Story:
Colton and Frankie were born with a recessive genetic hearing loss which has caused them to lose their hearing in one ear each during their informative toddler years. We are unsure if the hearing loss will continue and affect the other ear, making them completely deaf.
We have been on a life-altering journey that has opened our up our eyes and introduced us to the Deaf community. Our family is actively learning American Sign Language (ASL). After much deliberation, we have decided to get Frankie a cochlear implant for her left ear, as she has no useable hearing left. This was a difficult choice, as it is a lifelong affecting decision.
I decided to learn the sign for “I Love you” when I first found out my children would possibly go entirely deaf because the first thought that pass 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 sign language. It has opened our minds and hearts to a whole new community.
I created a pendant to help create awareness for hearing loss and help Frankie and Colton feel supported by the community around them. 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.
Colton and 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
How did you practice resilience when faced with this challenge?
I learned sign language. I researched genetics. We travelled to Maryland and Toronto (over 10 times) to get a cochlear implant for my daughter. We paid $16,000 privately for the surgery and device. I embraced our new normal.
Please share one piece of advice for people who are going through a similar challenge
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.
Are you ready to share your story of RESILIENCE? You can do that HERE.