Hi, I am Amanda and my daughter is deaf

****THIS POST ORIGINALLY FROM FALL 2013****

 

As you may know from reading my last post “A Beautiful Day in the Neighborhood…or so I thought, we have been dealing with some real ASSHOLES.  The sign has not been moved back, but it will be moved back within 2 weeks from today. 

To be honest, I have a hard time driving by that house.  My blood boils.  My eyes well up with tears.  I cannot fathom how anybody could ever think there is something more important than safety.  To think that a “Deaf Children Near” sign would de-value their home or turn away buyers and prevent them from selling their home is mind boggling to me.

As I was contemplating all of that in my head, I realized something about this whole process.  My daughter is DEAF, moderately deaf, but still classified as deaf.  Up until now I stayed away from that word.  Not that I was ashamed, but because I didn’t understand.  I would always use “hard-of-hearing” because she did have some hearing, so she wasn’t deaf.  Right?  For some reason I thought that if you had hearing aids and didn’t sign, you could not be classified as deaf.  Now I see things differently.

The definition of deaf is “lacking the power of hearing or having impaired hearing.”  Well, Addie is not in possession of full power of hearing (I really hate the word impaired), so by definition she is deaf.  My daughter is deaf.  I don’t think I will ever be able to explain how empowering it feels to accept that statement and be proud of it.

This past year has been a roller coaster of emotions; not knowing what was causing the hearing loss to watching her joy over her hearing aids and decorations, to asshole neighbors who whether they realize it or not, are trying to stigmatize my daughter for being deaf.  You know what?  Screw them!  My daughter is deaf and Ben and I have busted our asses making sure that our daughter does not feel ashamed for who she is, and we have done a damn fine job.  She is confident, she is compassionate, and she has a sense of humor that would crack most comics up.  Our daughter is perfect.  She is deaf and she is PERFECT. 

Hi, my name is Amanda and I am proud to be the mommy of my deaf daughter.

Creating a Smile

****THIS POST ORIGINALLY FROM FALL 2013****

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As I sat there staring at the computer, it felt as if my world had come crushing down on me.  Fear took hold and all of my insecurities resurfaced.  What if I couldn’t learn that fast?  What if I am not doing enough?  Thoughts and doubts rushed through my mind making me wonder if I was capable of being the mom she needed me to be.  She deserved everything I could give.  She deserved the chance to follow her dreams; to have everything I have and more.

Then I turned around and looked at the little, porcelain skinned beauty playing with her toys; she was happy.  Not just smiling, but exuding a happiness that is infectious and completely genuine.  As I sat there watching her, a smile crept across my face and she looked right at me. 

“Mommy.  Look at my house.  It is super big,” she beamed.

“It is perfect, baby.  I love it!”

“Thanks mom.  I love you!”

Tears started flowing and I couldn’t help but give her the biggest hug.  It was at that moment I realized that I could do this.  My biggest challenge as a parent is keeping her spirit and positivity alive, and I can do it.  I have done it before.  I will do it again.

When we first discovered she had hearing loss in the fall of 2012 and would need a hearing aid, I was devastated.  I did not know what to do.  Everything was so foreign to me, but I took to books and the internet- researching what could be the cause, what to do, how to help.  As we approached her hearing aid fitting, I realized something- I needed to make this fun, special.  From there on her hearing aid was her super power, she was a super hero, and she was in control of the color choices.  You know what?  She has never complained about her hearing aid.  She is proud of it and shows it off.  Hearing aid decorations have quickly outnumbered her jewelry, and it truly has become an extension of her creative person.

Fast forward to now, we now know what is causing the hearing loss.  My beautiful, incredibly funny little girl has Pendred Syndrome (PDS).  Her hearing loss is progressive, she has a 75% chance of forming a goiter (enlarged thyroid), and the possibility of vestibular dysfunction (causes vertigo, vision trouble, cognitive problems).  This all sounds so scary, even as I type this it is stirring emotions and thoughts I thought I dealt with, but we are going to get through this.  We will be testing her vestibular function soon, we are ordering a second hearing aid within the month, and we will be monitoring her thyroid.  It breaks my heart that such a small child has such a large entourage of doctors, but when you look at her, she is happy.  She is not bothered by what is going on.  She likes her doctors, her appointments, and she LOVES her hearing aid.  She is excited about a second one, and is putting in her requests for more decorations.  Her personality still shines, probably even more than before she had her hearing aid.

With the first diagnosis we found the positive, and with this new diagnosis we will do the same.  As scary as it is from the parent perspective, we will not let that transfer to her.  It is our job to make this as fun as can be, to take away the fear, and to encourage and foster her confidence and positive outlook.  She is perfect just the way she is, and I want her to know that.  And that is what it is about.  No matter what the situation, find the silver lining, and create a smile.