In-between Two Worlds - Our Journey with Progressive Hearing Loss


It is hard to believe that it has been 6 1/2 years since we first received our daughter’s diagnosis of hearing loss.  I still remember the fear that washed over me, suddenly feeling unequipped to be her mom. I had never known a Deaf person, I didn’t know ASL, what do we do next?  

At 3 we had her fitted for her first hearing aid, enrolled her in the Special Education Preschool in our district, and met with an ENT and geneticist to see if we could see what was causing her hearing loss.  Just as we were settling in to our “new normal,” we found out our daughter has Pendred Syndrome, which is characterized by progressive hearing loss and possible Goiter that presents in early adulthood.  

We have had our ups and downs with the diagnosis.  The first audiogram that showed a significant increase in loss was a hard reminder of what our future held.  Our “new normal” was always going to be changing.  We were always going to be adapting, and making adjustments.

By Kindergarten she was in a mainstream classroom and excelling across the board.  Her personality has always been infectious, and she made friends wherever she went.  She would educate her peers on her hearing loss, and has become a strong advocate for herself.


It wasn’t until her brother was born that the issues with progressive hearing loss started to present. Our son, while a carrier for Pendred Syndrome, does not have hearing loss.  She was heartbroken.  At first she didn’t want him to have it, but as we awaited the results, she was hoping for someone like her.  She so desperately wanted to teach her brother about hearing loss, make hearing aid charms for him, and “have someone in the family like [her].”  

At that moment, she burst into tears, letting her emotions spill out.  She was scared of losing her hearing, and losing everything she had known for the last 6 years.  She was scared of losing her friends, but also feeling lonely having only met one other person with hearing loss.

Trying to find groups to join, proved difficult.  Family ASL classes were hard to come by.  As a family we felt most of our resources kept us in, isolated from both worlds. Eventually I was able to join some social media groups, but many recommendations didn’t really consider my daughter’s situation.  She was deaf, but she had some of her hearing.  She had her feet in two worlds.


During a 3rd Grade project, she had an amazing opportunity to interview one of her role models, Dame Evelyn Glennie.  Evelyn is a world renowned solo concert percussionist, who is not only deaf, but lost her hearing at age 12.  It was a moment that will stay with my daughter forever.  The opportunity boosted her self-confidence, and you could see the smile wash over her just to be talking to somebody like her. Not only was Evelyn deaf, but she knew what it was like to hear before her hearing went completely.  She opened my daughter’s eyes to different ways of hearing, and for a time, removed the fear she was feeling about losing all of her hearing.

Fast forward to today, my 9 year old fourth grader is in a new district, doing well, but facing new obstacles. She is the new kid at school AND she is deaf.  These kids have not known her since Kindergarten, and they don’t always know how to interact with her, even though it is the same as they would with anybody. Her sadness and exhaustion comes through more days than before.  

Friendships take time, they thrive on common threads, and it has been this process of forming new friendships that has made her differences stand out to her.  She has cried often, feeling alone, missing her old friends, and scared of when her hearing will go completely.  It has rekindled the need and the drive to find deaf friends, to become more involved with Deaf culture, and to become fluent in ASL.  

At times, it feels very lonely. The advice we often get is either “make her get a cochlear implant” or “you need to put her in a Deaf school.” It is always black or white, but Addie is deaf AND (for the time being) she is hearing.  

We are working hard to prepare for the future, learning ASL, and at times it is uncomfortable.  Though we are always welcomed warmly, we sometimes feel like outsiders at DHH events as we are still beginning to learn ASL.  We also feel like our daughter’s hearing loss can be forgotten when we are in the hearing world and have to look for accommodations so that our daughter does not miss out on experiences. 

I often wonder what her relationships in the future will look like.  Will any of her hearing friends learn ASL?  What will family functions look like?  What is going to change and how will she feel with the inevitable changes? The waiting and wondering drives a lot of conversations in our household, and ultimately is basis for a lot of decision making.


Fortunately, we are in an amazing school district that houses the DHH middle and high schools.  We have been able to attend a few Family ASL classes, and have joined a parent support group.  While we are very excited as a family, the whole process has highlighted the middle area that we fall in.  The DHH program sounds AMAZING, and while my husband and I are very excited about it, our daughter is not.  She is conflicted.  She wants to make friends like her, but she also doesn’t want to leave her hearing friends again.

It feels like a constant struggle.When are we being good parents and letting her have a voice?When is it neglecting her needs? I imagine the conversation will get slightly easier as we get better at ASL and can submerge ourselves in the Deaf community more.For now, we feel like outsiders of both worlds, and are desperately trying to find the best way to blend the two for our situation.

To Gigi, With Love

***Edited version of March Hen of the Month Post from The Clucking Housewives***

Grandma Peggy (Addie's Great Grandma, Gigi) was an incredibly kind woman with just the right amount of bite.  She was a mom, a grandma, a sister, an aunt; she was family, tradition, and to me, she was Christmas.  She instilled a love of family in everyone she touched; possessed a desire to include them all in important moments, no matter how many people who would be invited or how small the house really was.  When I was younger, she had a way of always having her house decorated for every holiday, no matter how small, and I can’t remember a get together where there weren't people squished together around every table in the house. Christmas was where she shined.  Her gorgeous tree, her Christmas village that I helped set up, and every napkin, plate, even the soap dispenser in the bathroom was Christmas.

She was 86 when she passed on Thursday afternoon (July 3rd, 2014), and had moved several times since the home I remember her in when I was a child.  With age, her health prevented her from decorating like she did, but she still changed the clothes on her goose statue at the front door.  A wreath always coordinated with the holiday, and often she had a candy dish filled with holiday specific candies.  

Age, nor health issues, stopped her from being Grandma Peggy.  With help from family, cards were always sent out to every family member, for every holiday no matter how small.  Phone calls were made routinely, checking in on all of her loved ones, and most of her days were spent being lost in a book, well, several books. Although over the last nine months she took a quick decline, she still found a way to make a lasting, loving impact on my daughter every time we visited.

I still find myself thinking of Grandma Peggy, wishing I could go back to when I was a child.  Talk with her all day, play cards, bake cookies, and when the day was done, crawl into bed next to her and fall asleep.  I miss those times, right now more than ever, but now I have adult memories that I will cherish; watching her hold my daughter for the first time, squeezing my hand when she was in the hospital and I was so terrified I was going to lose her, and watching her light up when we talked about the family and its history.  

I realize I am a lot like my grandma. I cry at the drop of a hat; happy, sad, mad, I cry.  (Yes, I am even crying now while I write this.)  Holiday decorations bring me joy, no matter how small or cheesy.  Family is important to me, incredibly important, and that is why I find so much joy in genealogy.

My grandma endured a lot, raised 4 incredibly smart, passionate, loving children, and helped raise 8 grandchildren, and welcomed 9 great-grandchildren.  She entertained with a smile, although you'll have a hard time finding a photo with one; truly listened, if you talked loud enough; and loved with all of her heart.  She was loved by many and will forever stay in our hearts.

Hi, I am Amanda and my daughter is deaf



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.

Another blow to the gut


Last Friday was tough.  Plain and simple.  Not only did we have an afternoon packed with back to back appointments, but we got news we didn’t want to hear, and my little angel spent 30 minutes terrified by her thyroid ultrasound.

Addie has had several tests performed in the last couple of years, and the one thing that scares her the most right now are hospital beds.  It does not matter what test is being performed, if she needs to lay on a hospital bed, forget it.  Friday was no different.  She was nervous, but I talked her through the ultrasound while we waited to be called back.  Our tech called us back and Addie was nothing but smiles.  Then we went into the room…

Instantly, Addie started protesting, then crying, then deliberately moved her chin down to block her neck as much as possible.  These moments are some of the hardest when it comes to parenting.  This is when all she wanted was to be comforted and rescued, and I couldn’t do that.  Instead, I sat next to her and gave her a hug to keep her arms down, kissed her forehead, told her it would be okay.  It only helped for 30 seconds.  Then she went back to screaming, crying, and trying to free her hand to push the tech away.  Thirty minutes felt like 3 hours, and when she was done, I thanked the tech for her patience, scooped my baby girl up in my arms, and hugged her all the way to the car.  It was a rough afternoon, and although it would get better after picking up daddy, there was still a conversation with daddy I did not want to have.

Before the ultrasound, we followed-up with the ENT.  The appointment was incredibly frustrating, but mostly heartbreaking, and that news I had to share with Ben.  With the diagnosis of Pendred Syndrome, our little girl cannot play contact sports.  We were aware of that and even though it panged me every time I passed a park with swarms of kids playing soccer, I had accepted the fact that she was never going to have the soccer experiences I had.  I was accepting, because baseball was her favorite sport.  She loves playing it AND she is incredibly talented at it.  That was all taken away on Friday.  I was informed that any sport with a ball flying in her proximity would be a huge risk.  Baseball was out.  That was incredibly hard to hear, especially since the doctor thought it appropriate to suggest Cross Country for a 4 year old.  I wanted to slap him. 

Sharing that information with my husband that night was hard.  Even though he is a musician, his childhood was filled with recreational sports, all sports which would be classified as “contact sports.”  With that on our minds, there was a certain sadness that loomed over us as we walked down the beach. 


What was she going to do? While watching Addie run through the sand and collect rocks and shells, we realized she was happy.  She was oblivious to what the doctor had told us, and at the end of the day, we could still play soccer and baseball at the park, and in our backyard.  That was good enough for her.  From there we could explore her passions.  Oddly enough, the next day she expressed a desire to take a “ballerina class.”  So that is where we are at.  No soccer, no baseball, but she wants to try dancing.  That is a start, and if she decides she wants to be a ballerina, we will support her every step of the way.

Now if the ENT suggests that dancing is not a good idea, somebody might need to post my bail. :-)


A Beautiful Day in the Neighborhood


When my husband and I bought our house, we were thrilled.  Children playing in the tree lined streets, walking distance to a park, and a beautiful view of mountains all around us, the only thing missing were white picket fences.  Only a few short months after we bought our house did we discover Addie’s hearing loss.  Things definitely changed; hearing aids instead of house projects, but the neighborhood was still great.  The neighbors closest to us were incredibly supportive of the changes in our lives, and we noticed parents making sure that their children were not mean to our little girl because she was different.  It was a big sigh of relief. 

Then one day as I was driving home from dropping Addie off at school, I noticed a sign “Deaf Children Near.”  I was curious about it.  I had never seen one and I was not sure if the family purchased the signs or if the city supplied them.  I went home and started researching. Forum discussions popped up first and I found myself caught in the debate as to if the signs should be put up.  It shocked me to see the arguments.  The safety could not be denied, but I was caught off guard by the “it embarrasses the person” or “parents should teach their child how to look both ways” remarks.  To be honest, I was confused.  Was it going to bring enough safety?  Would it bother my neighbors?  Would it stigmatize Addie?  I e-mailed her teachers and asked for their opinion, one a mother, one is not.  Both responded with a resounding “Yes.  Request it.  That is great!”  So, I did.  


The city site did not have anything about that specific sign, but it was as simple as calling the city number and they put me in contact with the Transportation Department.  It was really simple.  I spoke with my contact, informed him of my request, and as we spoke he pulled up his map, said it should not be a problem and put in the work order.  Two weeks later the signs were posted, and I was absolutely amazed how quickly everything happened.  I was also ecstatic at the PERFECT location of one of the signs.  It was located on the bend leading to our street; free from branches blocking its message, and visible while driving up the hill, but not too high as to miss it once the street levels out.  It was perfect. (just a little redundant, maybe another way of describing it?)

Things were great, then 2 weeks later my husband arrived home from work late at night and noticed a sign on the light pole directly in front of our house.  He then walked down to the corner to see that the perfectly placed sign was gone.  We were in shock.  I did not receive an e-mail, a call, nothing.  Why was it moved?  A city policy?  A neighbor complaint?  We did not want to believe somebody could be that mean, but it seemed like the most logical answer.  Then the question became did this person have kids and didn’t want people to think their children were deaf?  Or was this an adult who clung to the crotchety old person stereotype?  We felt defeated.  Heartbroken.  At that moment, we questioned our decision to live in this area, we worried about how our daughter would be treated.  Would she be welcome?

Due to the time and the desire to create a paper trail, I e-mailed my contact asking why the sign was moved.  The next day was torture.  All I could do was sit and wait, and by the late afternoon my husband and my worst fear was confirmed.  A neighbor complained about the sign “cluttering” their front yard.  In fairness, the neighbor requested another sign be taken down, but that sign had been up for years, so you can figure out the real motive.  My contact sounded defeated and seemed to not be able to help us; it appeared his arms were tied.

We were upset.  No longer were we worried about how people would treat our daughter, we knew it was one person and not the entire street.  We were angered by the level of selfishness this individual possessed, and we were not going to stop fighting to get the sign moved back.  At that moment my husband drafted a letter to be placed in the mailboxes of our neighbors at the end of the street.  He asked for them to contact us and consider discussing having the sign put back up (one week has passed and we still haven’t received an e-mail).  I turned to Facebook.  Odd, I know, but our community has a page and I am constantly amazed at the level of support this page offers.  I pleaded for the person to contact me, to discuss the sign, but I made sure to be vague enough as to not elicit attacks on the person.  I was not sure if the complainer had an account.  He doesn’t, but curiosity struck and people were asking for more information.  After a few hours, I was talking to neighbors from the end of the street.  All of them agreeing that it was most likely one neighbor who has been a bully of the block.  It was upsetting to hear that if it was this guy, there was no getting through to him, but the support I was getting from people I have never met was uplifting.  Several people suggested getting signatures and that they would help; I was in tears.

Every caution/warning sign is more useful behind leaves. 

Every caution/warning sign is more useful behind leaves. 

With my new found support system, I e-mailed my contact at the city and asked these 3 simple questions:

1.  What is city policy when handling an aesthetic complaint in regards to a safety sign?    

 2.  What is the standard distance requirement for a warning sign?  Example: How far in front of a dip does the "Dip" sign need to be placed?  

 3. Would a petition to have the sign located back to the original location help?  If so, how many signatures would be needed to be taken seriously?

 Later that day I had a voicemail on my phone...

My contact apologized and said he was in the wrong.  He checked with his supervisor and the sign should not have been moved.  The current location was too close to what the sign was warning about.  They will be moving the sign back AND they will be talking to the neighbor who complained to inform him of the move and notify him of city policy. 

It has only been a week, and I expect it will be another week before the sign will be moved, but WE WON!  And to make it even sweeter, every neighbor that supported us on the FB thread offered to sign a petition if the city every moves the sign again.  Once again, it is a beautiful day in the neighborhood.



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



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.