I am deeply humbled and surprised by the massive response to my January 13th post: Is a Cochlear Implant Right for Our Son. I have been blogging here at Sunshine Praises for almost 4 years and have never had such a passionate response to one of my posts. (Nor have this many men visited, really, I think you have broken the “man” record today) I have tried to think of a way to respond to every comment (over 100 and growing) and hope that this post will answer some of the questions and comments that have been directed towards me.
I want to start by saying Sunshine Praises is like my home. It is a safe place that I have developed to talk about my family. My life. Sometimes I write funny posts, sometimes they are serious. Regardless, they are my own personal beliefs and experiences. I have shared my heartbreak of infertility, loss, faith, cancer, friendship, and grief. I try to be encouraging and hopeful. I chase rainbows and try to live boldly. Sometimes I like to address a topic that is dear to me. Sometimes I just post a cute picture of my kids. No matter what topic I choose to write about, my blog is like a living organism. It lives and breathes. It changes every single day.
For many of you coming here today, it’s like you fell into the last page of a book that is still being written. You read one chapter and decided that you knew the story. I want to invite you to get to know me more. To dive into our past and stick around for our future.
When I wrote this particular post the other day it was in response to yet another comment about a You Tube video. These videos have been the bane of my existence since announcing that the baby is Deaf. Well meaning family and friends have posted these videos on our FB pages and made comments that imply that we are hurting Ezra by not considering a CI for him. But they only see PART of the picture (or video) and it was the other part that I was wanted to expose.
First, I never intended my audience to be other parents of d/Deaf children. I have 10,000 regular readers and I promise that very few of them have Deaf children. It wasn’t even intended for Deaf people (although I knew my Deaf and interpreter friends/family would probably read and respond.) My intended audience were plain old hearing people, who do not understand that there is more to a cochlear implant than what they see on You Tube. My post was meant to inform and create an opportunity for me to express my feelings on the issue and hopefully keep them from making similar comments to someone else in the future.
Second, several people have expressed that the post has inaccuracies. The majority of my information came directly from our personal appointments with our ENT, audiologist and the CI specialist. Yes, we DID have an appointment and yes I DID speak with a CI specialist. Ezra was showing some significant vision concerns and due to his genetic form of deafness and his potential to having significant vision loss, I wanted to know what our options were. I don’t know why my ENT requires both a CT and an MRI and yours doesn’t. I don’t know why our specialist confirmed my concern about the destruction of the cochlea. I can’t answer those questions without reaching out to those professionals. What I do know is that there are serious inherent risks with any surgery and the steps to obtaining a CI are fraught with potential dangers that I am not willing to take.
Third, people are assuming that I am anti- CI or that I am judgmental towards parents who choose to implant their children. Which isn’t true at all. I am anti-hearing people, with no knowledge of Deafness, deaf culture and ASL telling me what my child needs to be successful. I am anti the oppression of Deaf people. I am anti ignorance. I am anti the idea that there is only one right way.
Lastly, many people have wrongly assumed that I have no prior knowledge of the Deaf community or that I have some how been brainwashed by Deaf people into thinking that CI’s are wrong or bad. It might be surprising to know that Ezra is 4th generation Deaf. That I am a Gallaudet alumni (MA, 1999) and that my fabulous husband is Deaf. For the past 20+ years it has been my honor and blessing to be a part of this AMAZING culture and community. I was welcomed into a unique and beautiful world and I am fortunate that many Deaf people (some with CI’s, some without) call me their friend.
I am not the least bit uneducated in difficulties that a Deaf child has in reading and writing. I am not uninformed about the educational challenges that lie before us. I know. Believe me I know.
Chris and I practice a belief called attachment parenting. We co-sleep, bed share and babywear. I breastfeed much longer that most of you would be comfortable with. I delay vaccinations. I use cloth diapers because disposable ones are filled with cancer causing chemicals. I don’t let my baby cry. My baby is intact (you can look that one up). My kids ride rear-facing and five-pointed harnessed in their car seats till they are 16 (just kidding).
Please know that I am thankful for each and every comment, opinion and story. I am blessed that that each of you took the time to tell me how you feel about my post, about being Deaf and about being a parent. It is a privilege to be able to share in the lives of people all over the world through my blog. I do hope that you will come back and follow the rest of our story. We are just at the beginning.