If you or a family member were to receive a diagnosis of a disease that would completely change your lives and make everyday life a challenge from here on out, how would you react?
Denial. Anger. Self-pity. Regret. Shock. Sadness. Acceptance.
Would you hide it, bury it deep down and pretend it didn’t even exist? Would you be angry and wonder what you did do to deserve this? Or perhaps you would research everything you can find on the disease, research cures and remain ever hopeful?
This post is about one family’s journey into the Deaf and Hard of Hearing world. Having a diagnosis of ‘moderate to severe’ hearing loss myself I have always been curious as to how other families dealt with their child’s disability. When I met Presley for the first time I was overcome with emotion. Here was a little baby, barely 6 months old and already wearing hearing aids. She is surrounded by loving and supportive parents and a loving big sister.
I knew I had to share this story with you because it is a story of acceptance and love. My hope is that you will read this and realize that we are all are strong and resilient. People can overcome obstacles with a bit of determination and support. Perhaps most importantly, people will come to understand that those with disabilities are not to be pitied.
At first friends, family, even strangers would meet us with the response “oh I’m so sorry” when they would see she wears hearing aids…
Please let me introduce you to Amanda and her daughter Presley.
My name is Amanda and I am a working mom who has the blessing of being a working, stay at home mom during this pandemic. I am married to a handsome man name Joe who is an amazing father to our two spunky little ladies: Ella (2.5yo) and Presley (1yo). My husband and I are both “hearing” as is our daughter Ella. Joe and I are learning to be more active and get out of our comfort zones so we can inspire the girls to want to do the same. We love sports, the outdoors, watching movies, cooking, art, reading, etc.
Question: What was your reaction when you first heard about Presley’s diagnosis?
Her diagnosis came as a complete shock, to be honest. Neither Joe nor I have any blood relatives who are deaf or hard of hearing so it never crossed my mind. When we were in the hospital at the time of Presley’s birth, she failed her infant hearing test. The nurse wasn’t surprised, as she was born via C-section with an extensive amount of fluid in her lungs. She simply asked us to schedule a retest with Public Health. In parallel, the Infant Hearing Program was enhanced a day prior to Presley’s arrival to include genetic testing via a heel prick. Presley was born July 30th, I received a call on September 3rd from the Children’s Hospital in Ottawa who is responsible for the genetic testing for the IHP (Infant Hearing Program). The woman on the phone informed me that Presley’s genetic testing had concluded a result of bilateral sensorineural hearing loss derived from a mutated gene causing a lack of protein generation in her inner ear. I was so stunned by this conversation that I actually asked her if she was sure she had the correct phone number and case. I went on to explain to her that this could not be possible, as neither my husband or I were deaf or have family who are. She then sounded like all of the adults in the Charlie Brown cartoons – where all you hear is “wah wah woh wah wah.” I tuned back in when she started to let me know statistics: It was a gene that both my husband and I carried – that was a 4% chance of happening. We had a 25% chance of both passing it on to our children. Ella ended up being the 75%.
We went through what seemed like the stages of grieving after that. We had appointment after appointment and were introduced to so many resources and caregivers. All I could focus on was that my sweet little baby girl had not heard me talk or sing to her. I was heartbroken.
Question: How did you reach the decision for Presley to wear Hearing aids vs. going without?
Shortly after the phone call, we were given an appointment to have a comprehensive hearing test done through ErinOaks. The Audiologist explained that her hearing level was moderate to severely deaf and that she would be well off with hearing aids. She continued to go on to say that Presley would be able to function as a typical hearing child in a typical school and that with speech and language therapy, it would not be obvious to the human ear that she is deaf. We decided to go that route to give her the best opportunity possible.
We have decided to raise Presley in a bilingual atmosphere – teaching her ASL as well as English.
Question: What has the journey with hearing loss been like so far?
I mentioned earlier that it felt like going through the stages of grief: denial, anger, depression, acceptance – even bargaining. A parent always wants to ensure that their children have the best available to them. During the initial diagnosis labels came into my head “special needs” / “disabled”. Both of which can often times give people a sense of pity or misfortune. I had huge fears of her being bullied or not being able to play sports or excel in school. I will openly tell you I knew NOTHING about the Deaf and HoH community. Over the past year we have come so far. We have decided to raise Presley in a bilingual atmosphere – teaching her ASL as well as English. We have been asked so many times by professionals do we wish for her to go to a deaf school or a spoken English school. What does she wish to identify with? The Deaf Culture or Spoken English? We always respond with the same – we just want her to be happy whatever she decides and whichever she chooses. If she tells us that she doesn’t want to wear hearing aids and wants to only sign and attend a deaf school – great, whatever will make you happy, Little P! If she says she wishes to wear them and continue on being bilingual – awesome, you do you little princess. We have no idea where things will take us, as she is too young to verbally communicate, but we are told she’s progressing as a “typical hearing child.” She is the sweetest, happiest person I have ever met – her eyes are always full of light and joy. And that’s what matters the most. It’s been an extremely humbling year to say the least.
Question: How is Presley and the family adapting to living with a disabiilty?
At first friends, family, even strangers would meet us with the response “oh I’m so sorry” when they would see she wears hearing aids or when we would tell them about her disability. At first that would really bother me. Now, I just say “I’m not. It’s part of what makes her who she is. Presley does just fine for herself. She’s scrappy and determined! And loves music! People are surprised by that. Our entire immediate family is learning sign language in support. It’s truly been a blessing and has somewhat brought us closer together. I’ve also become an advocate for the deaf/HoH members in my community. We have an Accessibility Committee in our town that primarily focuses on wheelchair bound individuals. I’m working with council to understand that there are other accessibility needs that they are not focused on. Our family also now supports The Como Foundation. They design and manufacture lip reading masks to help the community during this pandemic. www.thecomofoundation.ca
Question: What kind of future do you hope for Presley?
I think about this question quite often actually. I want both of my daughters to be strong and fierce. I want Presley to be able to advocate for herself and brush off any negativity that comes her way. I want to be able to instill that confidence in her. There are so many deaf/HoH role models for her out there to show her that she can do anything she dreams. If she wants to run a marathon, snowboard, be a pro Olympic swimmer, lawyer, doctor, teacher, astronaut, etc – I want her to know she can do that. No limitations at all to what she can achieve. As long as she is truly happy.
I can’t Thank Amanda and her family enough for agreeing to share this story with all of us. I also think we can all agree that this little girl is going to be just fine surrounded by a supportive and loving family, friends and a wonderful community.
If someone you know someone who is struggling with Hearing Loss please reach out to the Canadian Hearing Society at www.chs.ca. They offer a broad range of support and services for all kinds of hearing loss and have helped me in more ways than I can say.