The reaction I had to a recent news story posting on Facebook caught me completely off guard. The story was about a little boy with CHARGE syndrome and his journey getting
cochlear implants an experimental brain stem implant to assist with hearing. *I THINK that was the story, anyway. I didn’t read into the story any further beyond the photo because I got caught up reading the hundreds of comments that weren’t about the story at all. Comments from parents, doctors, friends of the family, deaf people, hearing people. I don’t want to delve any further into that story because I believe there is a beautiful journey there that isn’t relevant to my conversation with my daughter and certainly isn’t involved in any way in the mostly judgmental conversation taking place in all the comments. But I had to, at least, set the scene.
It’s no secret that Brandon and I approach Gracie’s hearing disability with a “total communication” approach that works well for our family. All types of communication, all the time. All available medical resources, all the time. It WAS a secret (to me), however, that there are communities of people in our world that would so strongly disagree with our decisions. Communities of people who would preach to my daughter that her parents were allowing experiments on her, or highlighting a unique part of her that is somehow “wrong” and needs to be fixed. It IS scary to me that Gracie might grow up to encounter these communities, or hopefully, be a part of them- a “contributing member” – isn’t that the term? And yes, I say hopefully, because I do think it’s important for people to know people who are “the same as” just as it is important for people to know people who are “different from”. All people.
If I’m so perfect, Mom, why did you force me to get/to wear/to use hearing aids?
If I’m so perfect, Mom, why do I have to have cochlear implants?
If I’m so perfect, Mom, perfect just the way I am, WHY OH WHY are you and Dad always trying to change me, to adjust me, to “help” me be just-like-everyone-else?
Just incase my exactly-like-me-daughter throws those questions my way during her exactly-like-me teenage years…
(AND YES- THESE QUESTIONS WERE BROUGHT UP IN THE COMMENTS SECTION OF THE ARTICLE I MENTIONED!)
Here is what I’ll say.
I’ve been thinking about you today. Not that I don’t think about you every day, of course, but in particular today…that’s what I’ve been doing.
Once upon a time, Mamma was born. I could hear my brother whisper and I could hear my Mommy sing. I knew Daddy’s voice. I could hear the birds chirp and the flute play and the music box dance on my dresser. Once upon a time, you were also born, baby. Just like me. Except a little virus crept into you life and took some of your sounds away. There are also parts of your ear that are missing- which is cool because it makes you SPECIAL.
Did you know that I’m a hearing person, baby? Did you know that you are a hearing impaired person, baby, or a deaf person depending on who you talk to? I hope you didn’t. I hope you know that you are my baby and I am your Mamma. You are a daughter, and a sister, and a niece and a friend and a granddaughter. You are a goddaughter. You are a sweetie and a snuggler. You are a punk. You are a sneaky little climber. And I’m sure if you are reading this alone, somewhere far in the future, you are a vast many other things, important things- beautiful things, by now.
Did you know that there is a Deaf Community, baby, that I am not a part of? Are you a part of it? I hope you are. I hope you aren’t. I hope you don’t even care to hope either way. I hope there are hearing people in your life and I hope there are deaf people in your life, just like I hope there are good people in your life. I hope you don’t see people and wonder if they are part of a community of people. I hope you already know that all people you see are a part of your community of all people.
Did you know that Daddy and I want Lilly to be an amazing learner? We want her to want to learn more than anything in the world. And she does! Did you know that we want you to be an amazing learning in the exact same way? Not “in your own way” but in the exact.same.way. You are curious and interested and a very serious thinker. We love that about you! We want you to be able to hear, to listen, to talk, to speak. We want to build up your toolbox, baby, and fill it with things to help you grow. Some of these tools are hearing and speaking- language, really. And guess what? Some of these OTHER tools are watching and signing, too. I don’t care one i-o-ta weather your language comes out of your hands in signs, or comes out of your mouth in words. But the thing is, Daddy and I want to give you both.
When you were a tiny infant, I used to picture you far in the future. That picture always included a highlight on your little ears. Were you hearing? Were you completely deaf? Did your ears, now so little, still contain little giraffe hearing aids and purple glitter ear molds? Did your beautiful skull contain cochlear implants or not? But the more I learn (and yes, Momma’s still learning) the more that picture of future you changes and the more those little ears fade away into a totally beautiful girl void of any meandering questions at all.
Here is the thing that I want you to know- you are not broken, baby. There are no parts of you that need to be fixed. Daddy and I love every single little piece of your body. However you want to communicate and however you want to learn, we will help you do it. If there are paths you chose that we have not traveled, we will get a map and follow you. If there are communities you join that we are not a part of, we will study and learn so that we can join you.
You belong to me, and I belong to you. You are my little Gracie Jane. Forever and ever and always.
To find out more about Gracie and her journey with congenital Cytomegalovirus (cCMV), read her full story here.
Chris Nalbone says
That’s beautiful Jacquie, and I think you and Brandon are raising two very beautiful, unique, smart little girls and doing a wonderful job at it. You have to expose them to the teaching and learning methods that you believe will help them grow and develop and hope others will do the same. I love all of you very much and we will be supporting you as you wing your way down Gracie’s journey wherever it leads you!
Perfect little girls created with love by 2 perfect parents! God truly blessed our family with Lilly and Grace!
Harley Foster says
Hey, i was born with cmv and im deaf. You can talk to me if you want to learn more about me how i was growing up deaf and stuff like that. You have a beautiful daughter. ( :
Hi Harley, than you for reading! I would love to send you an email.
I will admit to being totally naive about CHARGE syndrome and hearing disabilities, but I’m shocked to hear that some people don’t believe you should “help” children when you can. Should a child with poor eyesight not be given glasses? Should children without legs not be given wheelchairs or prostheses? Doesn’t every parents just want to help their child live the best life possible? We, as moms and parents, will be much better off when we stop ripping down each other’s parenting decisions and start supporting one another!
Jacquie I just came across your blog today – the name familiar from last weeks Lunch and Learn at The Motherhood and your face familiar from probably crossing paths at The Mom Con. Reading this has me in absolute tears – your love for your daughter poured out right here in words. I just wanted to say what an amazing mom you are to give her such a sincere and honest explanation. Your sweet Gracie is so lucky to be born into a family where she will have such freedom to be the girl she is destined to be. Thanks so much for sharing.
Thank you so much for those kind words Heather! It was wonderful to meet you. Hopefully our paths will cross again soon so we can get a chance to talk more. <3
I actually came across your blog because I saw your log cabin quilt on pinterest but saw that your sweet baby had CMV. I’m an audiologist and reading your letter made me weepy! It was so beautiful. I wish all of our parents had that very same attitude. And today, after a rough day, it was just what I needed. Love those little ears and those sassy (looks like) purple swirled ear molds! 🙂
I agree, Emilie. God bless you and everyone that advocates for the best outcomes for all of our hearing impaired kiddos 🙂 thank you!