Acceptance

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

It is finally starting to cool down, leaves are changing, and in the late afternoon parks flood with children in shin guards, running, and kicking soccer balls through endless arrangements of cones.  There is something about this time of year I absolutely love; it gets darker earlier, sweatshirts are need for evening events, and there is a smell in the air that feels like home.  I am instantly transported to my childhood soccer practices, the years I coached my siblings’ soccer teams, and weekend tournaments with some amazing girls. 

This year is different.  I still love this time of year, the weather, the overall feeling, but seeing the kids play soccer breaks my heart.  Addie will not be able to play organized soccer.  With Addie’s diagnosis of Pendred Syndrome, she cannot play contact sports.  Her hearing loss is progressive and hard impact, especially any to the head, can cause her hearing to go faster and more severe.  In our opinion, the risks outweigh the gains, so soccer is out.

A year ago I wasn’t sure if I wanted Addie to play soccer.  I was afraid of being overbearing and letting my previous experiences get the best of me.  Now, soccer is not an option, and all I see when I pass the fields are experiences that Addie will not get to partake in.  The practices, scrimmages, games, and out of town tournaments will never be an option.  There are other sports, her favorite sport, baseball, is still an option, but this year I am still dealing with the reality that my little mini-me, will not have the chance at playing the sport that occupied most of free time during my childhood. 

For now, I will embrace backyard soccer sessions, just the two of us, and as she gets older and tries different activities, I will encourage and learn about what ever path she takes.  Why wouldn’t I?  My parents didn’t know a thing about soccer when I started playing, but by the time my sister started playing, they were season veterans.  I may be a little sad that she will never play soccer like I did, but I look forward to learning something new and watching her in “her” element. 

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.