I Almost Missed the Kentucky Derby

We all have those triggers. Whether you have experienced loss or trauma or both, there is that thing that never fails to slingshot your brain to the moment it all happened. Many times it is a variety of sights, sounds, and memories. I have several things that are triggers for me with SJ’s diagnosis of hearing loss. Usually, it happens around her birthday. When the St. Patrick’s day decorations start coming out I am transported to her 2nd birthday party. Some of you know this story. We threw her a great big Green Eggs and Ham party. It was perfect because her birthday is in between Dr. Seuss’s birthday and the holiday where everything is GREEN! That party was one of the last memories of life as I knew it before her diagnosis.

A few days after her party we took her to the pediatrician for her 2 year well-child exam. Her pediatrician then referred us to an ENT who did a sound booth exam and then referred us to an audiologist for an ABR exam. We were scheduled to see this audiologist in Louisville Kentucky for some conclusive results on May 4th, 2012. This was a very significant date in Lousiville because it was the day before the Kentucky Derby race at Church Hill Downs. People come from all over the world for this historic event. Festivals, parades, and parties leading up to the Derby leave the whole city abuzz at all hours on Derby weekend. May 4th is Oaks Day.

We sat through traffic on the way to and from the audiologist’s office that day. The streets were full of men in bowties and women with fancy hats sipping their mint juleps. The laughter and cheers of celebration echoing through the alleys of Louisville were an ironic juxtaposition considering this was the day we learned that our daughter couldn’t hear.

SJ in Louisville the day of her ABR. She was in her PJs because she had to sleep through the testing.

Every year since then I always got a knot in my stomach starting in March leading all the way up to Derby day. I knew what was coming. All the memories of the challenges we faced in that season would keep replaying like GIFs in my mind.

This year was different though.

I didn’t even think about the significant date until I was scrolling through Facebook and I had to do a double-take when I saw a photo of friends wearing flamboyant hats and toasting their mint juleps. I squinted in disbelief when I saw it. There must be a mix-up, I thought to myself, but then I looked at the caption. It read: “Derby Time!!!” followed by a stream of hat and drink emojis. I checked my calendar to see if it was true and the date confirmed that I had in fact forgotten the anniversary of SJ’s diagnosis. I got choked up. Don’t get me wrong, I know all too well the pain that comes when you forget the anniversary or birthday of a loved one who has passed. This surely wasn’t anything like that and I had nothing to feel guilty about, but it still was a shock to me. I guess the inner healing that seemed so distant before was actually present now.

I’ll never forget the 2 1/2 year mark when the time that I had known that SJ was deaf surpassed the time I was unaware. That first two years prediagnosis might be short in comparison to the rest of her life, but it was it all we knew at the time and the idea that our child had a disability never crossed our minds. That milestone was a big one but so was this year’s Derby Day.

I am reminded of a blog post I did back in 2015. I shared:

It’s been 3 years since SJ’s diagnosis and we are still in the transition stage. I look at the timeline like this- Old normal, shock, transition (or adjustment, or adaptation), and then new normal.

We spent just over two years living in the old normal, there was probably a year of living in shock and just doing my best to stay afloat. The last two years have been transition and we’ll be here for a while. I feel pretty darn close to “New Normal” but we still have such a long way to go. I feel like for us that will be when she goes to main stream schooling. I’m sure it looks different for everyone and more experienced moms could give a lot more insight into all this and the multifaceted layers. I am just learning, but this is my message for those in similar situations. Don’t feel like you have to rush into coping or adjusting.”

I can look back at this now and see that the year I almost missed the Kentucky Derby was a sign of our new normal. That doesn’t mean there won’t be any more transitions or hardships, but her cochlear implants really are second nature for all of us now.

I hope that is an encouragement for someone out there. Lately, I keep reminding myself of the Robert Frost quote “The only way out is through”. That’s my current mantra. You can’t go over it or bypass it. You have to face it and depending on what you are going through this can look like a number of things. If you are in shock you may have just enough strength to breath and wait on the Lord and that’s it. Keep doing that and let hope be your anchor. Fix your eyes on Jesus, the author and finisher of our faith (Hebrews 12:22) and know that He who began a good work in you is faithful to complete it (Philippians 1:6). For everything there is a season and a time for every purpose under heaven ( Ecclesiastes 3:1) and while I don’t know how long this season will last I do know that someday you’ll see a photo, or date on the calendar, or a trigger of some sort and it won’t be as painful and you’ll realize- you made it through.

By Natalie|2023-06-12T06:24:38+00:00August 14, 2019|Our Hearing Loss Journey, Uncategorized|2 Comments

SJ’s First Year in a Mainstream School

This time last year SJ had just graduated from her deaf school. Her graduation was one of the greatest moments of my life for sure, but followed by a little anxiety and trepidation about what was next. Her whole life SJ had been in an environment that catered to her needs as a deaf child and she was about to be going to a school that was built for hearing children. This is one of the reasons we chose to have her repeat second grade at her new school.

I have had a lot of people ask how her transition went and what the first year was like, so here is a recap of life since graduation for SJ.

For starters, she got her first cochlear implant upgrade, the Nucleus 7, which has been AWESOME. I really can’t think of a big enough word to describe what these new devices are like for her. To think if they improved her cochlear implant processors this much in 5 years what will they be like when she is in high school?! As much as it is an added burden for her compared to hearing kids and it’s always a little scary to have a bionic anything on your body, it is also such a blessing. I am so grateful for her sound processors and the tracking device on the iPhone has come in handy!

She had several milestones last December including being a part of the church Christmas services, her first deaf alarm clock and her first journal.

She also had her 6th hearing anniversary!

The little film that she was a part was released on International Women’s Day and she did a great job.

Her first field trip at her new school was a success. She was so excited, she had an extensive checklist leading up to the big day.

Looking back I am moved to tears as I read the words I had typed out last year when I was anxiously awaiting her first year at a mainstream school:

“She will experience recess on a big outdoor playground. She will hold a lunch tray for the first time. She’ll begin reading chapter books and walking the same halls as her brothers and hearing announcements on an intercom. She’ll learn to use an FM system so that she can hear her teacher. She’ll learn to adapt and be an advocate for herself.”

and now she has done all of those things! She is crushing it and my heart could soar. She definitely knows how to navigate her own equipment. She made this little tutorial for pairing the mini mic with her devices.

She won an award for star student one month and got free Chick-fil-a for lunch! She loves reading chapter books now which was never the case before.

Were there days she struggled? Sure. She’s had a great year though and I owe an enormous thank you to her team at her public school. Not only did they support J and I and walk us through the process when we chose for her to repeat 2nd grade, but they went above and beyond to meet all of SJ’s needs as a deaf student. I hear horror stories all of the time about IEP meetings and schools not being able to accommodate the needs of disabled students but my experience has been the opposite!

At each meeting they addressed every little concern that we might have and at first this was hearing at recess and lunch when it’s loud. They recommended we have her audiologist adjust her implants to allow her to change the settings depending on the environment (which we did). They also said the intervention specialist might need her own mic instead of just having her teacher wear one (and they had it for her in no time). They also got a “Pass Mic” because the students at each table work together and discuss things often. This allowed the students to talk into a microphone so that SJ could hear them better with all the background noise. The list goes on. I love our school and I do not take it for granted.

On top of all that, SJ had a best friend at her deaf school who has a twin sister and she was in SJ’s class! This friend was even at SJ’s birthday party the year before so they knew each other and their relationship blossomed from there.

When we go to events at SJ’s old school the twins are there and when there parties and things at her new school the twins are there. It has been a wonderful bridge for SJ during this transition!

3rd grade is going to be a big jump but now I feel like she is totally ready. I have no regrets about any of our decisions. Cochlear implants, private school and therapy, summer school and an extra year of 2nd grade are all tools that have allowed her to speak, understand, and flourish.

This first year at mainstream school was an answer to prayer. To quote SJ’s journal “I had joy everywhere in my heart”. I can’t wait to see what is next for our shining star.

By Natalie|2023-06-12T06:24:51+00:00June 17, 2019|Education, Our Hearing Loss Journey, Uncategorized|1 Comment

SJ’s Hearing Anniversary

When someone receives the cochlear implant surgery they don’t hear anything until they get activated. This happens once the incision heals and they go to an audiologist for the external parts (the processor that goes over your ear). What the surgery does is implant the internal parts in the head but these parts are useless without the external processor and even the processor is useless without the mapping. A mapping is when an audiologist turns the device on and customizes the settings for each individual. This is maintained periodically as sometimes mappings can change.

So when a deaf person hears for the first time by way of a cochlear implant that day is often referred to as their hearing birthday. It’s not the surgery day, but the activation day and it’s special.

We don’t actually celebrate SJ’s hearing birthday. I’m not against it but SJ’s path to hearing took a lot longer than we expected. She had her first surgery for her right ear on November 5th 2012.

Her activation day was right before Thanksgiving. We were eager to see her respond to sound and anxious for her to say her first words. We had our video camera in hand ready to capture the life-changing moment, but were left disappointed when she didn’t seem to really enjoy this new world of sound. Even worse, she didn’t seem to react at all.

In the office that day we were given a giant case full of all the pieces and instructions that went along with SJ’s new hearing device and we were sent on our way. SJ immediately rejected the idea of keeping that magnet on her head so for the car ride home I just held the processor in my hand and SJ was more than content to ride along in silence in the backseat. As J left the parking lot I started crying looking down at this “medical miracle” in my hand knowing that I was holding something worth thousands and thousands of dollars. I was so overwhelmed. What if it got lost or broken? How am I supposed to be qualified to deal with this? Why doesn’t she want to wear it? At that point I had so much to learn about the difference between reusable and disposable batteries, how to adjust the magnet strength, locking and unlocking, using the dryer etc. It felt like too much.

“What am I supposed to do with this thing?” I mustered out through my tears. I wanted a practical solution at that moment because I didn’t have anywhere to put the processor other than back in the giant case which was in the trunk. I was also asking a deeper question: What am I supposed to do with this thing… over the next few years and for the rest of her life. As doubts and fears swirled through my mind I felt the weight of the world on me wondering if my daughter would ever be able to hear and speak and if not would it be my fault? J was dealing with the pressure in his own way and basically responded in a short tone that implied that we needed to suck it up because if we fail everything falls apart. A fight erupted between us and for a moment I was glad that SJ wasn’t able to hear.

I thought about all the videos I had seen online of deaf kids and adults hearing for the first time and it was always so magical. Here we were in an emotional minefield that was anything but magical.

After that, all the questions poured in through social media, texts and people in person. Everyone wanted to hear about the big moment where SJ could finally hear for the first time. I managed to put a positive spin on it, explaining how it wasn’t this instant transition but something we would see her respond to gradually. I left out all the crying and fighting and how our two-year-old pretty much hated the entire process.

We still had hope though. We knew that the cochlear implants themselves were only a part of the puzzle and that SJ needed teachers, therapists, and a team that would allow her to decode all these new sounds and learn to piece together her own words. That’s when we sought out Ohio Valley Voices, one of the greatest schools in the nation that helps deaf children speak. She started at the beginning of 2013 and had cochlear implant surgery on her left ear a few weeks later.

While I loved the school I was still anxious for her first words because her third birthday came and went and we had yet to really see much progress. Then one of the most gut-wrenching moments of the whole journey happened when some of the directors sat down with me to inform me that they didn’t think SJ could really hear. What!? I said. She just had a majorly invasive and wildly expensive surgery which by the way eliminates any residual hearing she did have. It’s supposed to be worth it because you gain the ability to hear with a cochlear implant, but even if she was profoundly deaf at least she could hear fireworks or loud music. Now she was down to NOTHING! We put it ALL on the line and I was being told she still couldn’t hear! They could see potential and effort on SJ’s part but something just wasn’t right. This news terrified me. The woman at the school explained that SJ could hear some really loud deliberate sounds like a chip bag being crinkled next to her ear. That’s reassuring I thought, If she is super hungry maybe she will be able to hear if someone has chips nearby. In all seriousness though, my heart plummeted at that moment.

The woman seeing the concern on my face reassured me that there was hope. She said “We think she could hear if she just had the right mapping. We recommend requesting that her audiologist turn up the volume on her devices.” Okay, I thought and I caught my breath a little. That sounds simple enough. We can do that. The problem was SJ’s audiologist was self-proclaimed “conservative” with mapping and didn’t want to overwhelm SJ with too much sound. I mentioned this to the school and they sent an email to our audiologist explaing why this was critical and recommended we get her ENT/surgeon in on it as well, which I did. Even then she barely changed anything.

After this very discouraging failed attempt, the director of Ohio Valley Voices had a special meeting with me and with an urgency she explained how the ideal window of speech and language was closing for SJ. I started to panic again. I felt like I was failing my daughter and had no clue what to do now. That’s when I was told that the audiologist at Ohio Valley Voices was going to take on SJ’s case pro bono (because we lived out of state at the time and our insurance wouldn’t cover it). This was a huge deal and showed that we were at the right school. They had a genuine concern for our daughter and would do whatever it takes to help her. They knew that we were living in my brother’s basement with an income below poverty level and they stepped in to help anyway. I wasn’t there when they remapped SJ but the results afterward were evident. I tear up just thinking about it. Between roadblocks with hearing aids, insurance, and doctors it felt like it was never going to happen but as soon as I opened the door to see SJ after this mapping I could tell that she HEARD the door then she heard me say her name! So many times I went in to pick her up from the nursery at church and I always said her name before she saw me in hopes that she would turn and run toward me, but she never did. For so long I wondered if she would ever hear music, or animal noises, or the words “I love you” then all at once March 12, 2013 she finally did.

Some sounds scared her a little bit and she did (and still does) like to take occasional hearing breaks, but it’s been an incredible journey. She said her first word shortly after that mapping too. She said “up” because she wanted to go upstairs. I asked her to say it again wondering if I heard it right and she said “Up” and she pointed to the stairs with her little finger in the air. I couldn’t hold back the tears of joy. We waited over three years for her first word and it finally happened. It was a dream come true. And that is the story of how SJ heard for the first time.

Fast forward to 2019.

Spring break was this week so SJ and my niece got to do an overnight with my mom. While there, the girls started to explore some of her makeup and jewelry. The idea popped in their heads that maybe they could get their ears pierced. My mom called and asked for my permission assuming I would shut the idea down because I am such a planner. Except I thought it sounded fun. Why not get your ears pierced on a whim with your cousin?

While I was still on the phone my mom turned to the girls and said “She said yes”. Immediate high pitch screaming erupted!

It was so cute. SJ’s ears have been such a focus because of her deafness. They’ve been sliced, stitched, examined through MRI and now she literally has flashing lights on them. I find it interesting that here we are 6 years after her hearing for the first time and her ears were the focus again, except this time it was for a different reason.

This time it is all about her being a girl wanting to have earrings like her grandma. This time was so typical and sometimes the typical is extraordinary!

The photos are of the girls day out. They went shopping, had donuts, pained pottery and got their ears pierced. The text is what SJ sent me from my mom’s phone. I love how she spells pierced, P-E-A-R-S.

By Natalie|2023-06-12T06:25:11+00:00March 23, 2019|Our Hearing Loss Journey, Uncategorized|0 Comments

“It took 6 years to get to this point.”

It’s been 6 years since SJ was diagnosed with profound hearing loss. The Kentucky Derby never fails to serve as a reminder of this milestone.

It was May of 2012 and we had been waiting a month for the ABR test which would finally confirm whether or not SJ was deaf. We had the test done at an audiologist in Lousiville Kentucky which is where the Derby is. Her appointment was on Derby weekend and the whole city is buzzing with energy. Everyone is drinking and hardly anyone is working (even the secretary at the audiologist’s office was off for Derby day). Every woman you saw was dressed in their southern finest with gigantic fancy hats on their heads. So much celebration going on all around us and there we were finding out that our two year old daughter has never heard our voices.

Fast forward to now. SJ is practicing her graduation speech and song. I feel a little guilty about how much emphasis I have put on SJ’s upcoming graduation to my friends and family and on social media. I’ve been talking about since last year!

Obviously I have a lot of words and feelings to get off of my chest right now. It’s just that we have been waiting 6 years for this. It’s amazing how much can happen in 6 years and yet you can never really quantify it in words.

“It took 6 years to get to this point.”

It takes less than 3 seconds to say that sentence, but it takes millions of seconds to live it. That’s why I am so focused on this big event. That’s why I talk about it so much. It has taken 2 surgeries, a multitude of specialists, and countless hours of therapy in order for SJ to hear and speak but she is doing it. The day that she no longer needs full-time intervention services is less than two weeks away.

So I apppologize if I over-share about all of this stuff. Thanks for being there for me as I process it all. Thank you for the prayer and support. Praise God we can see the finish line right around the corner. Although, as with many endings it is also a new beginning, the one we’ve prayed for all along.

By Natalie|2023-06-12T06:34:31+00:00May 11, 2018|Our Hearing Loss Journey, Uncategorized|1 Comment

5 Years with Cochlear Implants

This week marks five years since SJ got her first cochlear implant.

I looked back at the blog post I wrote about her surgery and it brings me to tears.

Then I look at the blog post about the time I had to fish for her cochlear implant off of the downstairs neighbor’s deck! I’m able to laugh about it now, but my heart still pounds a little just thinking about it.

Then there was the first time she muttered some hardly intelligible words into the microphone for the school Christmas program and I beamed with pride.

When I am old and grey I might remember this 5 year stretch as a blip on the radar of life. However, let me put it in writing that it was not! It has been a long 5 years. There have been ups and downs, challenges and rewards, but by the grace of God, we have made it to this very significant milestone.

What is so significant about 5 years?

1. It’s half a decade so that’s pretty big in my book.

2. She is in second grade now which is as far as you can go at her school. So this is her “senior year”. She graduates this spring.

3. The Cochlear warranty is 5 years and then you are eligible for an upgrade. You know how some people go berserk about the latest phone upgrades? Imagine that times one hundred!

For the record, the upgrade is for the sound processor. That means all the external parts which come off and on: the microphone, battery, and magnet.

A lot of people ask if she ever has to have another surgery as the technology improves and the answer is no. I remember watching promo DVDs from each of the three manufacturers that we had to choose from for SJ’s CI (cochlear implant). One thing they raved about was “backward compatibility” That means that whatever technology they come up with will work with the electronic medical devices that are implanted in her head. I know it’s very sci-fi but stay with me.

When SJ’s was implanted in 2012 she received the Nucleus 5.

The processor is hooked on her ponytail because her ear was still healing from surgery.

A couple years later Cochlear released the Nucleus 6 and the audiology world was abuzz with what all the new features would be. Some of SJ’s friends got upgrades. There weren’t that many noticeable changes except that it came with a snug fitting aqua accessory to make your processor waterproof. CI processors are like glasses. You take them off for “the three S’s”. Sleep. Swim. Shower. There are disposable baggies that you can order to allow you to swim with sound processors on, but they are pretty bulky so they’re hard to keep in place and it’s tricky to keep the right amount on hand for everytime you go swimming. Kind of like swim diapers, except you can’t just go to the store and pick up a pack if you run out.

That’s why the new aqua + was such an improvement.

The next time I caught wind of a new CI device was last year when they released the Kanso.

This is the same as the Nucleus 6, but instead of having an over-the-ear sound processor there is a round processor that attaches to your head and that’s it. I guess it’s more discreet. I was freaking out for a little bit wondering if SJ would want that or the traditional style that looks more like a hearing aid. J and I both decided to stick with the over-the-ear for a number of reasons, especially since she’ll be starting a new school and be responsible for all of her equipment. We want it to be something she is used to.

Now here we are at the end of 2017 and they just released the Nucleus 7 which is what SJ will be eligible for. The coolest part of this new CI is that it the first hearing device ever to be compatible with Apple products!

Okay this is where I geek out!!! I am a long time Apple user and it’s exciting to think about deaf people, including my daughter, being able to stream from their phones and iPads directly into their CIs and change their settings without carrying around an extra remote. The REALLY cool part though, the thing that makes me shriek for joy, is the FIND MY PROCESSOR feature.

You guys. This is a huge game changer.

Over the past five years, SJ has temporarily lost her processors dozen of times. We’ve driven back to parks in search of a missing processor. We’ve gone back to a playmate’s house searching every inch of area she may have crossed that day. Or the story I already mentioned where SJ slid her processor through the crack in our porch. It is so stressful and these things are not cheap. We are talking $20,000. Yes, I meant for there to be four zeros. The good news is if your child flushes their processor down the toilet or has it fly off on a roller coaster (I know people who experienced these examples first hand) you get a ONE TIME loss at no cost.

After all the headaches and heart attacks we always managed to track down missing processors. So we never needed the loss insurance, that is until a few weeks ago. SJ was rolling downhill in a Tonka truck (one of my kids’ favorite activities) and when she came in that night and was getting ready for bed I noticed she was missing a processor… again. Ugh. So we went out looking that night. We went out looking the next day. We talked to the neighbors and they were looking. One or our neighbor friends even had a metal detector.

Despite our best efforts the CI never turned up and I had to file a claim for our one time loss. The good news is we are months away from getting new ones anyway so I feel like we already reached the finish line.

That’s life with bionic ears. It’s not always easy, but it’s definitely a blessing.

By Natalie|2023-06-12T06:22:20+00:00November 2, 2017|Cochlear Implants, Our Hearing Loss Journey|0 Comments

The 5 Year Mark

It’s been five years since we found out that SJ was deaf.

5 years of trying to unlock a world of communication for her.

5 years of moving our family from house to house to get to a place that would have the resources that she needs.

5 years of aiming to balance a fulfilling childhood with the ground work for unlimited options.

Before SJ was even officially diagnosed I longed to be able to speak with her. I didn’t care how, but I wanted to be able to love her and teach her through words and for her to express her thoughts to me as well. I wondered what was going on in her mind. She was clearly an intelligent, independent thinker, but she had no words to piece together.

Having no time to loose I scraped together every resource I could find on ASL. That’s when I met a lady who is an ASL teacher from Denton Texas and she recommended the show Switched at Birth.

I found it on Netflix and binge watched all of season one (which was all there was at the time). I could watch deaf actors and hearing actors sign in a comprehensive way that was easy to follow. I would pause and repeat scenes until I was able to understand the signs without reading the subtitles. Eventually I could see exactly what they were signing and why they used certain signs even when it wasn’t a direct translation of the audible script. This show was an answer to prayer for me.

There were a lot of cheesy or even frustrating story lines along the way, but I craved the sign language and Switched at Birth met that need. The show was obviously dwindling down a while ago, but then last year they officially announced the final season. I watched the final episode to get my ASL fix and was completely unprepared for how it would affect me.

The first scene was with the two moms, Katherine and Regina.

Regina: Do you realize it’s been five years since the switched was discovered and we met?

Katherine: No. Has it been five years?

Regina: Mmm hmm.

Then Regina talks about how much everything has changed and announces that she is going to move out.

Katheryn says No.

Regina says-

It’s time.

Thanks a lot for leaving out the trigger warning Freeform! Of course I’m joking. This would mean nothing to most viewers (other than getting a little teary eyed about their favorite teen drama), but it represented so much for me! That’s when I realized it was May of 2012, the day of the Kentucky Derby in Lousiville Kentucky that SJ was diagnosed, exactly 5 years ago.

5 seasons of Switched at Birth is so much more than just five years of watching a show. It’s been a huge part of my new life as a mother to a deaf child. So when the characters say that so much has changed and that it is time to move on it touches a nerve.

As you know we just recently moved and in just a few months SJ will begin her final year at her deaf school. It’s a big season of closure and I am feeling all the feels. So to have closure with this show as well just seems too perfect.

In one scene they show flashbacks from season one and Emmet tells Bay that it is “the end of an era”. I know this is ridiculous, but it’s almost like God put this show in front of me for the exact time that I needed it and now I don’t need it anymore because this battle to give SJ a language is ending. We did it! She can communicate now! We are just tying up a few loose ends over the next year before she spreads her little wings. No, she’s not going to college, but close enough.

I remember when SJ said her first word. She was three years old and we were living in my brother’s basement. She wanted to go upstairs and said “up”.

I remember the Christmas that she was finally able to say words like gloves, snowman, and angel.

I remember when she said I paint pumpkin and I was thrilled that I could hear a little about what her day was like.

I remember when she said In 2018 I will graduate and then I will go to my new school. That was a couple weeks ago. Each passing milestone has brought tears to my eyes because what may be a routine achievement for some is a major victory for us.

Switched at birth was a major stepping stone for me in learning a second language which helped my daughter learn a first language, and for that reason Switched at Birth will always hold a special place in my heart.

Signing “brush teeth” when SJ was two-years-old

By Natalie|2023-06-12T06:28:56+00:00May 16, 2017|Our Hearing Loss Journey, Uncategorized|1 Comment

Having a Child With Hearing Loss

This post is made possible through the support of Cochlear. This company is a huge part of our lives and something I am very passionate about. As always all opinions are my own.

I will never forget the day we found out that our daughter SJ was deaf. The intensity of those feelings that seemed like they would always be raw have since been diluted with time. It took a good two years though to find our new rhythm.

No one in our family was deaf. So at the time all I had was a stack of books and pamphlets from the audiologist about “Understanding Your Child’s Hearing Loss.” To say it was overwhelming would be an understatement. I knew nothing about hearing loss. I honestly had never even heard of the cochlear implant before. Now I don’t know how I missed it, but it just wasn’t a part of our lives at the time.

When I did hear about the cochlear implant I thought it was brain surgery, which isn’t true. I also thought it would be better to wait until my daughter was an adult and let her decide for herself whether or not she wanted cochlear implants. However, after learning so much about how critical those early years are in language development we decided we wanted her to hear. Deaf children as early as 12 months old may qualify for cochlear implants and SJ was already two and a half years old. There was a lot of time to make up for and we wanted her to hear as soon as possible.

Like I said, we didn’t have any friends or family that were deaf that I could talk to, but I heard that my friend’s dad had cochlear implants. I was desperate to hear his thoughts. So even though he lived in another state I got his email address and reached out. He told me about his hearing loss and why he chose Cochlear for his hearing implant. In short, he explained how Cochlear has an amazing track record. Cochlear has been in operation for over 30 years. They are the global leader in implantable hearing solutions. SJ and my friend’s dad have Cochlear implants, but they also provide other products such as bone conduction implants. Cochlear has helped over 450,000 people worldwide who have moderate to severe hearing loss.

Deciding to implant a hearing device into your child’s head is not an easy decision and then deciding which manufacturer she will be committed to for the rest of her life is certainly something we did not take lightly. In the end we felt like we could trust Cochlear. She’s only had her hearing implants for 3 1/2 years now, but Cochlear has gone above and beyond when it comes to partnering with us to provide SJ the opportunity to live a life without limits.

Nearly 90% of children born deaf come from parents who are hearing (source), as was the case with our family. It’s hard to know what to do and who to reach out to. If you are one of those parents, friends, or grandparents in the middle of a hearing loss journey www.IWantYouToHear.com is an incredible resource. It can ease the sting of that overwhelming shock that you feel at first. Cochlear isn’t there to pressure you into making a decision about what to do when your child has a hearing loss. That’s something extremely personal and you have to decide what’s best in your situation. However, if you have decided that you do want your child to hear they are committed to being a support for life.

When people ask me about parenting a deaf child or a child with a disability I always say the same thing.

Being a parent is a full time job. Being a special needs parent is a like working a second job on top of that.

You can’t and shouldn’t do it alone, but luckily there is help out there. I encourage you as an advocate for your child to get a support system in place. This could include doctors, early intervention specialists, teachers, therapists, and even the team at Cochlear and iwantyoutohear.com.

Another thing I say on repeat about raising special needs children (and this applies to raising children in general) is that It isn’t easy, but it is a privilege.

Speech, language, and hearing are skills that take a lot of extra effort for these precious deaf children. But as you teach them you will learn too. You will learn how to really pause, and listen, and to not take any little sound for granted.

I am truly thankful for this journey we’ve been on. I have been connected with so many amazing people along the way. I have never regretted our choice with Cochlear. We wanted our daughter to hear and now she can. We wanted our daughter to have a life with out limits and she does.

By Natalie|2023-06-12T06:25:47+00:00July 28, 2016|Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized|6 Comments

This Time is Different

I sat in the exam room with a tightness in my throat. I had felt fine, but as the reality of it all sank in the emotions rose up. I began to cry hot tears. I felt the need to apologize because I don’t like making other people feel uncomfortable. The audiologist responded in a firm voice ” Do not apologize.” She told me that I was completely entilted to respond any way I wanted and that just because I have been there before that does not make it any easier.

This was what happened a week and a half ago at Elle’s ABR hearing screening. As you can imagine this means that the results were not good. I thought Elle could hear, and I was right. She can hear. She responds to many different sounds, but she still has hearing loss and it’s in both ears. I wasn’t going to talk about it until I knew more, but I am ready to talk about it now. Especially since I just got off the phone with the early intervention specialists who are ready to come over and set up her first IFSP. SJ has an IEP which is an Individualized Education Program because she is in school. Before that you have an Individual Family Service Plan which is when case worker helps you come up with appropriate strategies or goals for your preschool age child with special needs.

So just like that Elle has Special Needs. She is 6 weeks old and already considered delayed because she can’t hear well. I am being blunt, but don’t worry. I am not concerned for her. I think labels are silly. I remember when I was being interviewed for a research study and I was asked how I felt about my daughter’s “exceptionality” and I said “Excuse me? Her what?”. “Exceptionality” she repeated. That’s what they are calling it now. I laughed at such a desperate attempt to not offend. I am comfortable with hearing loss, deafness, disability, exceptionality whatever you want to call it. It does however mean our calendar, our budget, and even major life decisions like where to live will look different over the next few years because of this.

Hearing that my daughter has hearing loss is so different this time. I continue to process a myriad of emotions. On the one hand Elle’s hearing loss is mild. It’s complicated and I won’t go into all the details, but that’s good news. SJ’s hearing loss was profound. At least by the time we found out it was. When Elle had her appointment J explained that we speculate SJ had previously had more hearing, but then lost it over time. He asked if that could happen with Elle. The audiologist said it certainly could. That’s a hard fact to swallow. I don’t know if I should assume the worst and hope for the best? I have a lot of questions for her ENT.

On that note, the fact that we already have an ENT, an audiologist, a school, and a support group in place is awesome! With SJ I was given a stack of books for parents of deaf children and I felt completely overwhelmed. This time is different. I have a newborn instead of a toddler. I live in Ohio rather than Kentucky. I will be dealing with hearing aids rather than cochlear implants (at least for now). I feel fairly equipped, but also uncertain.

I have so many questions and other concerns, but I will have to wait another month to even talk to certain specialists. The day of Elle’s hearing test was the first day of Christmas break for the kids and we went right into all of the Holiday gatherings. First was celebration with my family followed by a week of festivities with my in laws. That was actually good timing though because I had no obligations and have been pretty much distracted by Christmasy things. However now we prepare for evaluations, testing, hearing aids, and therapies. It’s really happening. I am doing okay, but I am also a bit of a basket case from time to time. Elle on the other hand is doing great. She is such a precious treasure and we all adore her.

I know many of my family and friends are going to be finding out about this for the first time. I didn’t know the best way to deliver this announcement. It’s not dreadful news like a terminal illness or something, but it’s not like announcing a pregnancy either.

I hope you’ll bear with me as I navigate this new journey because it might look similar, but this time is different.

By Natalie|2023-06-12T06:26:11+00:00December 28, 2015|Babies, Hearing Loss, My Life, Our Hearing Loss Journey|22 Comments

Awaiting the ABR… Again

Elle is now 5 weeks old. She had her one month check up this week and is now 10 pounds 22 inches. The Doctor has been extremely impressed by her growth. Here is a side by side from her first check up and her last which were taken exactly 4 weeks apart. Elle looks completely different.

She is really filling out. No more newborn diapers or clothes for her. She has outgrown them!

There aren’t a lot of updates. She smiles now, but it’s not often.

She still sleeps about 18 hours a day.

I did a little impromptu photo shoot of her on her 1 month birthday.

I love that she was born close to the holidays. I think about how our birth story was so unconventional and I wonder how Mary must have felt and what her birth story would be like (of course we know the story, but not from the perspective of Mary).

We have an important appointment coming up and I would love it if you would be in prayer for us during this time. I previously mentioned that Elle failed the newborn hearing screening. The first time they came in with the equipment to test her the tech lady had a unique personality and was rowdy. I think she was trying to be nice. For most people this is just a routine test. No reason to get too serious, but all kinds of faculty were coming in and out and joking around and making a racket so Elle woke up and was fussy for the second half of the test (the left side). So she failed on the left, but the boisterous tech assured us it was because she woke up and that’s all it was.

The next day a younger new tech came in while it was still dark and quiet in our hospital room. I asked if she could shut the door and maybe hang a do not disturb note or something. She looked at my like I was crazy, but at least it was a much more subdued and calmer atmosphere. She even let me nurse Elle during the test. Again Elle passed on the right, but she couldn’t even get a reading on the left. It was like it wasn’t hooked up right so the tech tried to adjust it. She never was able to figure out what was wrong so she said that she failed and she would refer us to an audiologist. I was hormonal, and tired, and obviously stressed so I sternly proclaimed “We have an audiologist. This is a big concern for us and I’d like to know what is going on” Then J and I asked more questions about the test. None of which she could answer. She looked really intimidated. She had never even heard of Connexin 26 which is the genetic hearing loss that we have in our family. It is the NUMBER ONE CAUSE of sensorineural deafness so you would think someone that tests for hearing loss would have some familiarity with it. I then asked to speak with a supervisor and did, but she mostly just had some paperwork for me.

I immediately called SJ’s school and talked to our audiologist. She made me feel much better about the whole thing and gave me advice on how to proceed.

I know a lot about hearing loss and I think Elle can hear. I feel very confident in that. I guess you could say we know she can because the test confirmed it on the right side. With Connexin 26 it is highly unlikely that it would be unilateral (only on one side) so chances are she is fine.

However, this whole thing brings up a lot of tender memories for me. We have to go through all the same testing that we did with SJ and we have to keep her asleep for 90 minutes which should be easy considering what I said about her sleep, but it’s still completely unpredictable and out of our control so that stresses me out.

I cried when I called and scheduled the appointment. I have openly expressed to people how I know that she is fine and it’s just a machine error which happens all the time. And hearing children do fail this test A LOT.

However, lately there have been other thoughts popping into my head that make me wonder why it was the left ear BOTH times. Maybe just a coincidence? I mean if something is going to go wrong with the test you have a 50/50 chance that it will be on the left side. Still part of me wonders if she has another problem on that side that doesn’t even have to do with Connexin 26. Or what if her hearing gets progressively worse, which can happen. What if she is one of those rare cases?

Luckily, most of these frantic thoughts didn’t really come into my mind until this week so at least I haven’t spent the past 4 weeks panicking.

Please pray that we get some answers with this test. I do have a peace about it, and all in all I think everything is going to be okay, but I hate the idea that if she doesn’t sleep we have to drag this out for another month or so. That would be terrible. I just want this to be over with.

The reason I titled this “Awaiting the ABR… Again” is because I wrote another post about 3 1/2 years ago when I was waiting for this same test for SJ. You can read “Awaiting the ABR” to find out what the test is and what the waiting period was like for me in that time when I didn’t know for sure whether or not SJ was deaf. It feels like a world away.

Thanks for all the prayers and support. Of course I will keep you posted.

By Natalie|2023-06-12T06:29:15+00:00December 16, 2015|Babies, Hearing Loss, My Life, Our Hearing Loss Journey, Pregnancy & Birth|4 Comments

Living in Holland (Thoughts From a Special Needs Mom)

If you have a child diagnosed with some form of special needs then you have probably come across the “Welcome To Holland” essay by Emily Perl Kingsley. Basically it compares the shock of finding out your child has a disability to the feelings you would have if you planned a trip to Italy, but landed in Holland. The idea behind the whole analogy is that Holland isn’t BAD it’s just different and may take time to readjust your original plans and learn your way around.

The comparison applies to my situation well. I thought I was raising a perfectly “normal” (for lack of a better word) child the first two years of her life before I learned that SJ was deaf. I was speaking Italian, bought all the guide books for Italy, and really believed I was in Italy until that point which I consider my crash landing in Holland.

I have known about SJ’s hearing loss for 3 years now. The 2 1/2 year mark was a significant threshold for me because at that point I knew that my daughter was deaf longer than I knew her as (I thought) a hearing child.

It really does get easier. I have an appreciation for Holland. I’ve met lots of new friends here and learned so much. I’ve got the Holland guide books and maps now. I might as well have a tshirt and bumper sticker declaring my loyalty to Holland! There are moments though. There are moments you remember this wasn’t your original destination. I am being candid because I know I am not the only special needs mom going through this.

For example I have never babied or coddled SJ for her disability. She can truly accomplish anything she wants to do. She has been learning to swim this summer and let me tell you she is a champ. She fearlessly tackles this mission with great passion and fervency. She does so without the use of her cochlear implants so she is completely without hearing the whole time. I try to sit by the pool for a little break and she will tug on me and sign “Practice! Practice! Mom, practice.” I see her going after it with all she’s got and when she comes up for air with the splashes of water blurring her vision I scream “Good job. Take a breath. KICK! KICK! KICK! You’ve got this!” but I know she can’t hear me. She can’t even read my lips or see me with the conditions that we are working with in that moment and I have felt helpless. Similarly, when my three kids are going to sleep (they share a room for now) I lie there in the dark with them for a while and Ezie says he wants to pray. After he finishes he wants his sister to take a turn. I tell him SJ can’t hear us right now because she doesn’t have her implants. If it were light it would be different because she reads lips so well, and with her implants she is just communicating non stop, but the next night we went through the same thing and Ezie said SJ needed to get her implants. He’s two and just starting to verbalize more himself, so it’s kind of heart breaking to hear him process all of it for the first time. Add to some of these emotions that SJ is starting kindergarten and she can’t go to the same school or have the same opportunities as her brother and it’s just another layer of Oh yeah, I was supposed to be in Italy.

I know I shouldn’t feel guilty sharing some of these stories, but I do because we are so blessed and I love SJ exactly as she is. We are to the point now that if I try to think of what life would be like if she weren’t deaf I absolutely can’t wrap my brain around it because it’s a part of who she is. It’s like trying to picture what she would be like if she had been a boy. That’s just not who she is and I don’t want to change a thing.

As far as the little bumps in the road, we can purchase special gear that she can wear in the water to swim with her cochlear implants on. We can make sure everyone takes a turn praying in bed before SJ takes her implants off. She goes to a phenomenal school, and will have tons of wonderful experiences this year in Kindergarten. These are really minor things, but as in the Holland analogy it’s different and it takes some getting used to.

I have a friend whose son just crossed the one year mark of being a double amputee and that family has the most incredible testimony.

I have loved cheering them along as I have watched all that their little man has achieved and I can’t wait to see what comes next. They have a caring bridge site where they post updates about Jude’s progress. Reading some of their experience has been like reliving my own. Even though SJ has artificial hearing and Jude has artificial legs there are just TONS of similarities.

I don’t know it all (that’s for sure) but since I feel like I am a couple years ahead on this journey I shared with my friend what I have come to realize after being thrown into the world of special needs parenting. I wanted to encourage her that just because it’s been a year doesn’t mean that you should be completely adjusted and move on. It’s been 3 years since SJ’s diagnosis and we are still in the transition stage. I look at the timeline like this Old normal, shock, transition (or adjustment, or adaptation), and then new normal.

We spent just over two years living in the old normal, there was probably a year of living in shock and just doing my best to stay afloat. The last two years have been transition and we’ll be here for a while. I feel pretty darn close to “New Normal” but we still have such a long way to go. I feel like for us that will be when she goes to main stream schooling. I’m sure it looks different for everyone and more experienced moms could give a lot more insight into all this and the multifaceted layers. I am just learning, but this is my message for those in similar situations. Don’t feel like you have to rush into coping or adjusting. It’s going to be uncomfortable at times for some more than others, and somedays you are in Holland with a map from Italy. That’s okay, you will get there. I will get there. Our precious babies will get there and boy will we have stories of all the adventures we’ve had!