There is not a more vulnerable and scary thing for me to do than writing. So here I am, doing what might be the most adventurous thing I could ever do – writing. I don’t have a full idea of where exactly I am going, but here are a few things you can expect from me: honesty, vulnerability, and my story.
While my story has many different parts to it, our journey with hearing loss has been one that has come to a forefront. The story is both my children’s and mine. As a parent, I have gone through grief, and shame, and have come out as a proud advocate. When I was learning and in the whirlwind of finding out about my son’s diagnosis, I searched the internet. I felt unbelievably alone in this journey. There was not a person in my life that had experienced hearing loss and I felt lost.
To add to the frustration, we were told that my son had too much hearing for the Deaf culture. (Note the capital “D”). He would have the ability to learn to speak and hear and function well in a mainstream environment. He would not need to learn ASL. So essentially, my son had too much hearing for the Deaf world and not enough hearing for the hearing world. We were left paving a way, trying to make decisions that were best for our child with no hearing loss community behind us.
Fast forward four years and my third child was born. A baby girl we named, “Sayge.” She too would follow the footprint of her brother with mild to moderate hearing loss. But this time we knew better. We didn’t have to spend as much time learning an entirely new world but could spend our time learning how to advocate, and create a community that we desperately needed. We were able to speak out, and not let false shame and guilt rob us from enjoying our children.
When Sayge received her hearing aids for the first time, I was determined to get a video of the experience. Through that video, I discovered an amazing online community that supports children and adults exactly like Ayden and Sayge and all else. This was the first community that was inclusive to all walks and life stories related to the deaf community and hearing loss. This would become our online community home. I loved the blog and community so much I asked if I could write for them. This was one of the bravest requests I have ever made. And surprisingly they not only said yes, but that they have an entire community of writers that they call “hEARo’s.”
So, if you are looking for support and guidance in your hearing loss journey or your child’s check this blog out! Phonak’s hearing loss community blog called, “Hearing Like Me.”
So, here is our journey. It is bumpy and messy, but I feel it must be told and shared. I appreciate you taking the time to read these words. I am so grateful for you taking this journey with me.
If you are just starting out on this journey of hearing loss, or your child has just been diagnosed, I would encourage you to start off reading these posts:
Baby and Toddler’s with hearing loss
- 1. Our journey on why we choose to invest in a personal Roger system.
- 2. How The FM system helps with parenting.