Speak What is True

When I saw SJ up on the stage at the church I went to growing up I couldn’t help but let the tears come.

It was such an answer to prayer to watch her use her gift of sign as a ministry. A couple of months ago I shared a video of the two of us signing “Gratitude by Brandon Lake”.

My friend who is a dance teacher wanted to know if SJ and I would be interested in incorporating ASL into the dance she was working on with her class. I agreed without hesitation and SJ was all in as well. SJ’s cousins are a part of this ballet and she was very excited to work on this project with them!

Then we got to meet a new friend and that was icing on the cake.

Morelia’s sister is in the ballet too and it turns out Morelia knows some sign language so she was the perfect partner for SJ. She actually learned to sign before she could talk. It was a great resource for her since some of her medical challenges delayed her speech. SJ had the same experience as a toddler due to her deafness. The two girls are the same age and both worked very hard to learn all of the sign language and practice with the ballerinas.

I love how God brought this beautiful and diverse group of young ladies together to spread a message of his love.

SJ’s genetic mutation is called connexin 26. Morelia’s is 22Q, but their act of worship was proof that no diagnosis or numbers were going to hold them back. It was a joy to watch all of the girls.

The lyrics to the song say “Here’s my heart Lord, speak what is true”. As I watched Morelia and SJ sign those words I loved how they were sharing the words in a voiceless language.

It makes me think of how God speaks to us. Don’t get me wrong, I fully believe that God can and does use an audible voice, but how often does he speak to us in other ways? In the Bible we see him use a rainbow, a dove, a donkey, a burning bush and more. He can speak to us through nature and the arts. He can use anyone and or anything. When the girls did their performance, I heard the words and I saw an interpretation through dance and though sign. It was a powerful reminder of the limitless ways that God can speak his truth.

This whole experience was such a beautiful example of God’s faithfulness. Both performances were really special and I know many lives were touched.

By Natalie|2023-06-12T06:27:54+00:00May 24, 2022|ASL, Uncategorized|0 Comments

ASL Signs for Gratitude by Brandon Lake

I am so excited about this video I recently posted. A little background if you are new here, my daughter SJ was diagnosed with severe hearing loss when she was two years old (almost ten years ago). She can hear and speak now thanks to cochlear implants and hard work, but it was a very long journey.

I started simple signed language when she was a baby before I knew that she was deaf and when she was dianosed I knew I needed to find a way to communicate with her immediately. So I devoured every resource I could on American Signed Language. One thing that helped me learn ASL was to worship in sign. Several years ago I had some friends who are deaf that started coming to the church where my husband was the full time worship leader and while I certainly could NOT interpret the message (I am nowhere near fluent) I could interpret and lead in sign during worship.

When the song Gratitude by Brandon Lake came out it resonated deeply in my soul so I did what I always do when I want to learn the signs, I googled it! Except there was no interpretation online anywhere. I felt like the Lord led me to be the one to post a video of the interpretation so I did and I had my daughter join me.

I know there are many ways to interpret, especially music. I did receive help from a deaf friend who is fluent, so between my friend, SJ, and myself this is what we came up with. It’s an expression of worship in the first language that my daughter and I spoke to each other with. Fun fact, she is left handed and I’m not so our signs are a mirror image of each other, which I feel like makes it even more special.

So there is the full back story to this video. If you are interested in learning the signs to the song Gratitude line by line I will leave the gloss below. Glossing can be used for any language and it’s when you do a transcription of the words instead of a translation. So I will type out the signs that we used, but keep in mind a lot of this goes deeper than just a direct word for word translation, it’s facial expressions, body movements, and reactions that express the full message of the lyrics. It’s one of the beautiful aspects of ASL that made me fall in love with this language.

I could go on and on, but for now, here are signs-

All words fail

I have nothing new

How I show my gratitude

I can sing

I often sing

but every song ends

you eternal

*throw hands up*

praise again again

all I have hallelujah hallelujah

I know not much but I have nothing for king

but heart sing hallelujah hallelujah

I have one response

I have one strategy

*spread arms wide*

I will worship you

come my soul don’t *shy (but we did more expressive movement)

lift song

I lion inside breathe

lift up praise Lord

I’m simplifying big time here, but I know something like this is helpful when learning. I would encourage anyone interested in ASL to learn about the full structure, culture, and nuances of the language, but you have to start somewhere. My heart is that maybe someone who is learning about worshiping in sign, or is homeschooling, or even in ministry of some kind that maybe this blog post would be helpful. It was a fun first time experience to share this expression of worship with my daughter.

By Natalie|2023-06-12T06:23:55+00:00February 15, 2022|ASL, Uncategorized|0 Comments

Isabella Then and Now

It’s been four years since SJ got the priceless gift of her very own American Girl Doll.

You can read the whole story here, but basically I wanted to get her a doll that could have hearing aids but knew there was no way I could afford an American Girl Doll. So, I posted this ISO on Facebook Market Place and received an overwhelming response.

I was just praying I could find a USED American Girl doll that I could afford and God provided above and beyond that! I received an American Girl Doll still in the box from a stranger which I was able to gift to SJ on her birthday.

It was the best birthday gift ever! The first year was really sweet and my mom brought SJ and Isabella to the American Girl doll hospital at the Mall of American in Minneapolis and she got hearing aids.

It could have ended there and it would have been worth it, but the fact is four years later she still loves her doll. It’s been such a treasure to watch her grow and change and still cherish Isabella. She’s 11 now and just got some new accessories for her birthday.

I know this imaginative play won’t last forever so I am documenting it while I can! Here are some of my favorite snap shots of SJ and Isabella throughout the years.

Look at how little SJ was when she was 7! Someone get me the tissues!

Here are a few other special memories with Isabella.

Isabella doesn’t go with her everywhere, but she’s been fortunate enough to travel quite a bit in her four years.

She’s been known to wear Elle and SJ’s old baby clothes.

Oh and you’ve gotta love the bows.

They’ve had their fair share of matching outfits.

The dress in this Christmas photo was actually SJ’s when she was a baby.

Isabella was there when the world shut down and the kids suddenly had to do distance learning (SJ’s on a zoom call in this photo).

Spotted this scooter at a yard sale this past summer.

When you homeschool sometimes you have to do your school work at the car dealership while your mom is getting the oil changed.

SJ has made so many cool things for her doll and I wish I photographed more of them but here is a stage made out of a pizza box and the mic stand is adjustable!

I wish you could peek inside and see all of the details of this little bedroom that SJ made.

This year Elle got a My Life doll and so that’s been a lot of fun for these sisters.

Up in the tree house

Reading time!

Time for bed.

It’s been a fun four years.

By Natalie|2023-06-12T06:19:36+00:00April 14, 2021|Hearing Aids, Uncategorized|0 Comments

Raising Articulate Kids

BRAG ALERT! On the way home from school recently my oldest son was telling me about his day. He was describing a situation with one of the teachers at his school and said:

“She’s different than all of the other teachers. She’s not mean. I wouldn’t call it mean because she is fair, but she is… well… intimidating”.

I was so proud of him for taking the time to articulate his thoughts and observations. So many times it’s easier to throw out the word “mean” because even a toddler knows that word, but to really process whether it was simply being mean or something more complex takes a lot of maturity and I commended him on that. I am proud of how my kids can speak out and express themselves. Every single one of them at some point was labeled as “strong-willed” by someone with an opinion, to which I eventually just rolled my eyes (at least internally). It’s easy to be frustrated with a child that isn’t super compliant when you want them to be, but there are so many benefits to raising a strong-willed child and I believe one of them is that they are more inclined to articulate their thoughts and needs. The key is teaching the appropriate and most effective ways to do this. So in this article I would like to explore 10 ways to help your child become more articulate.

Don’t Dumb Down Their Vocabulary

It’s okay to use big words with young children, just make sure you are explaining those words and that they have an understanding of what you are saying. There are so many great resources for how to implement this, such as the picture book “Big Words for Little People” or the books or show “Fancy Nancy“. I also give an example in number four on this list.

2. Early Intervention therapy is a blessing

Please hear me out, when I write about raising articulate kids this isn’t coming from the queen of high tea. I’m the messy mom, so let’s keep it real. THREE of my four children have had speech therapy/early intervention. As someone who had to fight hard for my deaf daughter to be able to communicate, I understand the value of intervention and giving kids the tools they need to advocate for themselves and articulate their thoughts ideas, and feelings. There is absolutely no shame in reaching out for help if your child needs. It is also important to recognize that effective self expression can present itself in many different ways.

3. Give opportunity for the child to speak

I just wrote a blog post about intentional pausing to allow children the opportunity to process, ponder, and respond. Even with my husband I will literally look at the clock and make sure I wait at least a minute to let him finish his sentence before I jump in. Sometimes he pauses for so long I think he is finished but he isn’t. He is an introvert and his brain takes longer to process things (this is not a slam against intoverts, it can definitely be a benefit).

Whether introverted or not it is important that we allow a space/break in conversation for our children to articulate their thoughts.

4. READ

Research continues to show that the more children are exposed to reading, the richer their vocabulary becomes. I like what scholastic says about using books for vocabulary boosters

“Put as much expression as possible into your reading. When you come to a word that is sophisticated, draw it out. Take the word “scrumptious,” for example. Say it slowly as part of the sentence and then add a comment like, “Scrumptious. Hmm, that means really, really good. Look at that apple pie. It sure looks scrumptious to me.”

5. Get them in front of a crowd

I am a believer in using public speaking as a way to build a child’s confidence. It teaches a child important life skills such as how to speak with clarity, conviction, and confidence! Whether it is at school, church, a play, or some other creative method, find ways to give your child an opportunity to speak in front of a crowd.

6. Narrate

Talking out loud and narrating what you are looking at or doing is especially important for babies. You might be at the grocery store with a baby in the shopping cart and you start explaining everything that is happening. “Let’s go over to the bananas. I am going to pick out a big bunch of bananas. This one looks nice and yellow. These bananas are going in the cart!

It doesn’t stop with babies though, it just changes a little. You may not be narrating anymore, but it is still important that our kids hear us express ourselves and observe how we interact with our spouses, their teachers, or even when we are going through difficulties.

7. Congratulate and encourage

I used the example of my son describing his intimidating teacher. I was able to commend him for choosing his words carefully. Another example was at a Doctor’s visit. The pediatrician made sure they directed the questions at my child and allowed him to answer. After describing his feelings the Doctor said “You speak well for yourself. That’s important.” That happened years ago but the value of it has always stuck with me.

8. Ask open ended questions

It’s so easy to ask yes or no questions and allow our kids to keep it short and sweet, but if we really want to know how they are feeling it’s better to prompt a discussion. Here is a list of examples.

9. Limit screentime

I think it’s even more difficult to raise articulate children these days than in years past because teenagers and kids are spending so much time online or texting. Meanwhile, their communication skills are plummeting! A way to combat this is by having boundaries and limitations on their screen time. I know some kids get phones for emergency situations and such, but I think we need to take a great deal consideration in how early we introduce the use of digital interaction (texting, DMs, or social media).

10. Teach Them the Power of Words

For our family, as Christians, we are teaching our kids what the Bible has to say about the words we choose. For example:

Proverbs 20:15 Wise words are more valuable than much gold and many rubies.

Proverbs 18:21 Your tongue has the power of life and death. Those who love to talk will eat the fruit of their words.

Those are just some of the ways that we can help our children to clearly and appropriately express their thoughts. Even with all of those tips though I think the most important way is leading by example and then having listening ears when our children are trying to tell us something.

By Natalie|2023-06-12T06:33:33+00:00September 11, 2019|Speech Therapy, Uncategorized|0 Comments

Intentional Pauses

The book Hamlet’sBlackberry: A practical philosophy for building a good life in the digital age by William Powers is an all-time favorite of mine. Even though no one has Blackberry phones anymore the information in the book still applies! It’s all about finding balance in a world of hyper-connectivity. Powers is not against technology at all, but he says what makes it work for and not against us is when we have some spaces in between the screen time. Powers says the trouble comes when “We don’t have any gaps, any breaks in which to make sense of it; do something new, creative with it; enjoy it,” The same notion applies to how we interact with our children. We have to leave gaps or space to let things sink in.

Some space comes in the form of subtle pauses. Let me give an example by sharing a very personal video from 7 years ago.

The video has actually been shared in professional circles for use in conferences and teachings for people that work with the deaf and cochlear implant recipients. After my daughter had her first cochlear implant surgery I was prompting her to speak. Keep in mind she had never said anything before so to see her respond to any auditory stimuli was a huge breakthrough.

What her therapist and Otolaryngoly team loved about this video was the connection that took place in the pauses where she was given the opportunity to respond. If for some reason you can’t see the video it’s very simple. I show her a Woody cowboy doll and say Boot, b-b-b and then after about 5 seconds she says Buh. I am not trying to brag about how awesome I am at speech therapy, because they just happened to catch a glimpse of a very touching moment. The point is if you go through speech therapy with your child you will learn that as important as it is to narrate everything, and give them tons of modeling, prompting, and auditory training. What is equally as important is that you pause. It’s in that space that they can chew on it, process it, and have a chance to respond to it.

It’s not just about what you say, but also the spaces where you don’t say anything at all. These pauses give children a chance to really think and evaluate.

Sometimes the pauses are for our benefit. I’m pretty sure every parent struggles with anger or outburst when a situation with a child escalates past the breaking point. I know that for me I have reacted and implemented discipline in the moment that I later regretted. For example, one child hit another in the backseat and I was so mad that I told them they couldn’t go to the birthday party they were looking forward to. The truth was we were all going to the party and it wasn’t a consequence I could follow through with. Rather than just reacting I should have remembered this advice from the book Love and Logic:

Don’t feel like you have to hurry into an immediate reaction. Give yourself time when coming up with a consequence and just let the child know that it’s sad and you are going to care of it later.

The kicker is you still have to follow through. Sometimes this hard because life keeps going and forgetting the offense can happen. Still, I feel better when I pause and take a moment rather than just react.

There are so many benefits of intentional pausing. It’s the little things like just enjoying a moment in silence together, or watching as your disgruntled child soften ups and decides to ask for forgiveness. So much can happen when we pause for a moment.

I know we live in a very fast paced world where we aren’t used to slowing down and taking a breath, but we need to. We need to with God (Proverbs 46:10 Be still) and we need to with our children. It’s amazing what can happen if you make some space for it.

This post was originally featured in a series called “Teachable Parenting” For more articles like this check out the contents page here.

By Natalie|2023-06-12T06:33:44+00:00September 5, 2019|Speech Therapy, Uncategorized|1 Comment

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

We’re Big Wonder Fans!

Z and I both read Wonder over the summer and fell in love with Auggie, his family, and the characters that R.J. Palacio created in her New York Times Best Seller.

It really hit home for me on a personal level because not only do I have a special needs child, but I also have hearing aids. When Auggie describes his experience of getting hearing aids for the first time and hearing the white noise become quiet I knew exactly what he was talking about. I’ve experienced that! The part about genetics was really insightful too and describes our situation well in terms of deafness.

Z really loved the book and it’s perfect for his age group (he is 10). A lot of people have asked me about if there is any questionable material for younger children. There were a couple things in the book and movie that involve a tiny bit of kissing (the older sister and her boyfriend) or a secular worldview implying that what we experience is all because of the universe. None of it was heavy or pushy at all, but if you are really sensitive to stuff like that, as I can be, it’s nice to know about it ahead of time. Also, the book talks briefly about girls who are flat. It was so subtle I wasn’t even sure if they were referring to girls chests or not, but it is in there. Nothing shocking I can assure you!

We loved the book so much Z was the one that begged me to check out Auggie and Me.

Wonder is written from different perspectives throughout the book. Auggie and Me is not a sequel but it gives more side stories that are related to the book. I personally LOVED Auggie and Me. Julian’s story was incredible. It was so heartfelt and deep. I won’t give any spoilers but it brought up some great discussions for Z and I. Some of the parts he brushed over and didn’t really get as emotional about allowed me to explain to him what happened in this part of our world’s history, why it was so horrific and why we need to remember the lives lost.

Okay, next up is Wonder Boy.

When I saw that 20/20 was doing a segment about a real boy that had the same kind of cranial deformities as Auggie I knew I wanted Z to see it. I warned him that while the movie was fake and made up by Hollywood costumes and makeup, the disorder is real and this is what it really looks like to be impacted by it. The show was extremely touching and informative. I learned a lot from watching it and if you have some kind of cable provider you can still watch the segment online. It is really good!

Lastly, Z and I had our annual mother-son outing on Sunday. We’ve been counting down the days until we could see Wonder on the big screen.

I’ll be honest, the whole movie from start to finish was one giant tear fest for me.

I cried probably a dozen times. I don’t think other people will cry that much but it really affected me. The very first part is about Auggie going to mainstream school for the first time in his life and how nervous his mom is. In just 9 months I am going to be in that same position sending SJ to mainstream school for the first time in her life, so that scene hit me like a ton of bricks. I did laugh throughout the movie too and I clapped at the end with the rest of the audience in our theater. Z and I both agree that the book is better because there is just no way to cover all the material from the book in two hours. In fact, the hearing aids are one of the things they cut out. It was still a good representation of the book though. They stayed true to the original story.

At the end of the movie Auggie is graduating and his parents (played by Julia Roberts and Owen Wilson) are sitting in the crowd. Z leaned over to me during this part and says Hey! There is the author! I turned toward him a little bothered that he was interrupting another crying scene. What? I whispered back. It’s RJ Palacio in the movie! Z said pointing to the screen. Then I saw her too. I was impressed that Z picked up on that. R.J. Palacio’s photo is in the back of the book and she is interviewed in the 20/20 segment, but I would have never noticed her cameo appearance.

So I googled it later and wouldn’t you know I can not find a single shred of evidence that the author of Wonder makes a cameo appearance in the movie. But check out these pictures and tell me that’s not her!

This image released by Lionsgate shows Julia Roberts, left, and Owen Wilson in a scene from “Wonder.” (Dale Robinette/Lionsgate via AP)

RJ Palacio the author of Wonder

If it’s not her, then it’s a look-alike that’s for sure!

Between book one, book two, the Wonder Boy and the movie, I think it is evident that we are pretty big Wonder fans. When my other kids are a little older I plan to introduce it to them too!