the story of this little boy's hearing loss journey

You begin to imagine all the hopes and dreams you have for this new sweet soul before you even hear his little heartbeat or see his little face.

From the moment those two pink lines appear, you are forever changed. The woman, wife, mother you once were begins to shift, preparing for the new life ahead. Your life, their life, his life. You begin to imagine all the hopes and dreams you have for this new sweet soul before you even hear his little heartbeat or see his little face. The love that swells inside of you is paralleled to none. It is and will forever be one of God's greatest gifts: motherhood.

This was the case for me. In September 2018, we saw those two little pink lines for the first time. It was just weeks after our wedding that my husband and I learned we were expecting our first child. Bennett Crew Lapso graced us on May 14, 2019, and our lives were forever changed. Each and every day of his first year of life felt like a new gift. Constantly growing, learning and evolving. Seeing the world through his eyes. Witnessing him become the little person he was created to be. Those precious pieces of time will stay with us for a lifetime.

Then just one month after his first birthday, we saw two pink lines for a second time. We immediately began to envision the new shape of our little family. Two under two - how did we get so lucky?

Corbin Grey Lapso entered the world on March 12, 2021. As the doctors laid him on my chest, Corbin lifted his head, looked directly into my eyes and captured my soul. Now, almost 18 months later, I like to believe that that was Corbin's way of easing me into what was to come and reassuring me that we would get through whatever life threw at us... together.

After a day of of cuddling, nursing, and napping; frequent nurse and doctor visits; and more episodes of Fixer Upper than one could ever need, my husband and I were eager to head home to introduce our sweet Bennett Crew to his new baby brother, Corbin Grey. The only thing standing in our way was the completion of Corbin's newborn screenings which included a preliminary hearing test. As we mentally prepared to go home, we were not mentally prepared to hear the news that our baby was being "referred", as he did not pass the hearing test. With hearing loss not even being on our radar as a potential issue in our family, we asked for him to be retested immediately. This time, they performed the otoacoustic emissions test which ultimately came back with the same result. Referred. The technician recommended waiting a month or so, suggesting it could be fluid in the ear from delivery, and then scheduling an appointment with an audiologist. My mind immediately began to race. I would not wait. I called the audiology team from the hospital bed.

Six days later, we met with Dr. Allison Ziska-Dirham. There, Corbin underwent his first auditory brainstem response (ABR) test which tells how the inner ear, called the cochlea, and the brain pathways for hearing are working [ASHA]. In layman's terms, although Corbin's brain would "light up", indicating it was hearing sound, it had to be at very loud volumes. With this information, Dr. Ziska-Dirham gave us Corbin's first official diagnosis. I remember watching the audiologist during the ABR and knowing it wasn't going "well" but never in my wildest dreams did I anticipate that news. Corbin was born with bilateral severe to profound sensorineural hearing loss. Though she did her best to describe what this meant, all I heard during that initial diagnosis and that it was was permanent, lifelong and could never be reversed outside of with the help of hearing technology. . From there, I clutched onto my brand new baby boy as the room went black and all conversation turned to the "wah wa wa" of Charlie Brown's teacher.

I sat wedged between both boys' car seats in the backseat of our Jeep Compass, holding onto to Corbin's tiny little fingers and just wept. I wept for Corbin; I wept for my husband and I; I wept for Bennett; I wept for every family who has to hear those words and wonder what life will be like moving forward.

As you can imagine, when we first received the news of Corbin's diagnosis, we were shattered; completely broken. Having little to no experience with the hearing loss world, it felt like every hope and dream we had for Corbin came crashing down. I remember wondering how in the world we would learn sign language and teach it to both of our boys. I remember questioning how I would ever be able to read or sing and tease my newest little guy. I remember hurting thinking that he wouldn't have the quality of life that I wanted for him and wondered if he would even ever get married. I remember feeling shattered, not knowing how I would ever connect with this sweet little baby. I barely made it out to the car on that dreary, rainy Thursday morning before breaking down. I sat wedged between both boys' car seats in the backseat of our Jeep Compass, holding onto to Corbin's tiny little fingers and just wept. I wept for Corbin; I wept for my husband and I; I wept for Bennett; I wept for every family who has to hear those words and wonder what life will be like moving forward. That day was hard. Bennett didn't understand why mommy and daddy were sad. Corbin so desperately needed us and more than ever, we needed him. But it was so hard to even be.

Not sure if it were hours or days that passed, it all still feels like a blur, but we picked ourselves up, wiped our tears and made a commitment to move forward. We would do whatever we needed to provide Corbin with whatever he needed to live the life he deserved. Immediately after diagnosis, I was so adamant about sticking with hearing aids. I was against cochlear implants. I didn't like the idea of the permanence of them. I didn't like that they were so visible. I didn't like that he would have to undergo surgery. I didn't like any of it. But after educating ourselves, my husband and I quickly changed our tune and were all in. We wanted whatever it would take to give him the chances of living a "normal" hearing life - and cochlear implants could give him just that. I found a Facebook support group and read story after story of children with the same diagnosis doing amazing things - performing in a Broadway play, joining a pro golf team, graduating from Harvard. And while those things astonished me, it was the mundane things that brought me peace - a toddler reciting so clearly his ABCs, an elementary-aged child reading a story, a teen performing a song at her school's talent show. These hearing loss children appeared no different than their peers with the exception of that tiny device attached above their ears. Could this all be a reality for Corbin, too? Would he be able to hear and speak like us, after all? Our hearts filled with hope and we needed to make this possible for our boy.

This lead to an introduction to Dr. Samantha Anne. My dad, having worked with some great professionals at the Cleveland Clinic, reached out to his connection who immediately thought Dr. Anne would be the perfect person for our Corbin - and boy was he right! It was the weekend so we reached out via email and got an immediate response. In that initial email, knowing very little about our family or about Corbin, Dr. Anne gave us the glimmer of hope we were so desperately needing. She said "Many babies with bilateral severe to profound sensorineural hearing loss live very normal and fulfilling lives with the right interventions." This single sentence fueled our initiative - we would not give up until we provided Corbin with that "very normal and fulfilling life". We scheduled our first appointment at the Cleveland Clinic Main Campus and prepared to meet Dr. Anne.

From the moment we met her, we knew we wanted Dr. Anne on Corbin's team. It was so clear that she is an expert in the field, but what set her apart is the connection she makes with her patients. It felt like she saw Corbin the same way we saw him - a little slice of Heaven with a large side of cuteness.

After that first appointment, we knew what we had to do in order to pursue the CI route. Corbin underwent countless tests - from an MRI to an EKG to a sedated ABR to genetic testing. Though it wasn't easy to watch our just weeks old baby undergo so many things, we knew it was just baby steps forward in helping our baby to hear.

On April 22, 2021, Corbin Grey received his first set of hearing aids, at just 5 weeks old. Watching his face as he connected sound to his world was a one-of-a-kind experience that we will cherish forever.

That evening, I journaled and included a thought: "Though the journey may be long, we have no doubt that God has some big, big plans for our sweet boy and that Corbin will undoubtedly move mountains with his life." This still rings so very true today.

Life with hearing aids was a beautiful struggle. We were over the moon that our baby could now hear new sounds and hopefully hear versions of our voices, but man was it tough to keep those things on a tiny, little baby. We had to navigate the best positions that would allow Corbin to explore movement, but prevent the hearing aids from being knocked off. We had to teach him not to put the hearing aids into his mouth, a skill he never conquered. We had to run over the minute we heard the dreaded whistling that indicated the hearing aid wasn't in the proper position in his ear. We had to go what felt weekly to have him fitted for new moldings that would then take weeks to arrive, giving him just enough time to slightly outgrow them and start the whole process over. Days with the hearing aids were long and hard, but they were worth it - they set the foundation for sound for Corbin.

Though the journey may be long, we have no doubt that God has some big, big plans for our sweet boy and that Corbin will undoubtedly move mountains with his life.

In those earliest weeks of Corbin's hearing loss journey, we were introduced to another person who has become an integral part of Corbin's story, Dr. Don Goldberg. Dr. Goldberg is a dually-certified audiologist and speech pathologist. He has worked with countless families over the past 40+ years as a coach for auditory verbal therapy. Much like Dr. Anne, from the minute we met him, we loved him. Within minutes, he spoke to my soul and countered all my fears. He encouraged us that all the hopes and dreams we had for Corbin have all the same potential today, just with the help of proper intervention. We made it clear that we were ready to put in place those proper interventions.

Beginning on April 8, 2021, when Corbin was just 4 weeks old, we began our journey with Dr. Goldberg. Here, Dr. Goldberg teaches us how to teach Corbin. He also assesses where Corbin is at in his listening and spoken language development. Being an elementary teacher, these sessions eased my worry, as it was clear we were taking steps in helping Corbin thrive. With Corbin's hearing aids in place and monthly AVT sessions scheduled, we were beginning to find our new groove, as we gave time for Corbin to get stronger.

Though I can't say the worry ever fully subsided, our days became much brighter once we learned that Corbin's hearing loss was a result of Connexion26. We always thought that the day of Corbin's diagnosis would be forever marked as "the worst day" in this whole journey, but the weeks that followed, while we awaited the results of Corbin's genetic testing were much darker. While some hearing loss cases go unidentified, others can be linked through genetic testing. We learned that if Corbin's cause could be traced, it would likely either be categorized as non-syndromic or syndromic. Not knowing much about hearing loss and its causes, I immediately turned to "Dr. Google" which took me down a very dark hole. In the height of my fear, I started to convince myself that Corbin's cause was syndromic, meaning there was a syndrome associated with his hearing loss and with that would come other struggles. For example, one linked syndrome to hearing loss is usher syndrome. Usher syndrome is a rare genetic syndrome that affects both hearing and vision. I felt gutted. What if Corbin had this and would eventually also lose his eyesight?

Fortunately, his results came back and identified Connexion26 as the leading cause of his hearing loss. "Connexin 26 mutations are the most common cause of congenital sensorineural hearing losses. Connexin 26 is actually a protein found in the gap junction beta 2 (GJB2) gene. This protein is needed to allow cells to communicate with each other. If there is not enough Connexin 26 protein, the potassium levels in the inner ear become too high and damage hearing." [Verywell Health]

From here, a weight was lifted off our shoulders and we knew that Dr. Goldberg's words rang true: Sky is the limit for our Corbin Grey! We can and will handle this hearing loss!

Through the rollercoaster of emotions, I tried my best everyday to stay in the moment and enjoy all the things you are supposed to enjoy with your newborn - we cuddled, I talked and sang to him, we played and I prayed. I made it my goal to treat him exactly how I treated his big brother Bennett. To say I didn't worry or turn to Google for answers would be a lie but it never served any good. The ONLY thing that helped was dedicating my time to giving him anything and everything that he needed in that moment. And loving him for what he was - my perfect baby boy.

We are forever grateful to Dr. Anne and her team who quite literally changed our baby's life.

On November 9, 2021, Corbin Grey underwent bilateral cochlear implant surgery, performed by Dr. Samantha Anne at the Cleveland Clinic. The 6 hour procedure had us on pins and needles, but we knew he was in the best hands possible. Though it was early on that we knew cochlear implants were the best route for our Corbin, it wasn't an easy decision to hand our baby over to be cut open, drilled into and returned with a foreign object being a permanent part of his skull. We prayed and prayed that none of the "what-ifs" would become a reality. Fortunately, after 6 hours of waiting and praying, Dr. Anne came out so gracefully and informed us that the surgery was a success. We cried tears of joy for all he endured and all that was to come!

The first 24 hours post-op were a challenge, in most part due to the extended exposure to anthestia, but then, as if a light was switched, Corbin was up and smiling and ready to take on his days! We are forever grateful to Dr. Anne and her team who quite literally changed our baby's life.

Two weeks later, on November 25, 2021, we met with Dr. Carmen Jamis, another beautiful person in Corbin's journey. This day, officially known as Corbin's Activation Day, marks the day that his cochlear implants were turned on and thus, the first day his hearing began to be restored. To us, it marks the first day of the rest of his life... the biggest leap in his journey yet! We chose Cochlear's Kansos2 model, which is an off-the-ear cochlear implant that only connects magnetically to the implant site. We were amazed that something so small could make such a big difference in his life. How grateful we are for medicine and technology!

As Dr. Jamis turned on his devices, his responses to sound were immediate. At one point, Dr. Jamis accidentally banged a tambourine and he immediately turned to look. "Wow! I can't get anything pass you now!" Though that first day was emotionally and mentally draining, as we began to learn how to navigate this next chapter, we were overwhelmed with joy that our baby could finally hear us more clearly and that that was only going to get better and better.

Corbin is now 9 months since activation and I can confidently say he is thriving. He has an extensive range of words in his vocabulary, his favorites being all his family member's names, ball, bubble, please and thank you... but really the list goes on and on. He responds and repeats immediately all the Ling sounds. He knows his animal and vehicle sounds. He will imitate anything and everything we say. He evens sings along to some of his favorite songs like "Twinkle Twinkle Little Star" or country hit, "Buy Dirt". To say that we are in utter awe of him would be an understatement. He exceeds all our expectations and then some! Truly....sky is the limit for our sweet boy!

And the greatest takeaway is that he is such a HAPPY boy, despite the cards he's been dealt. We know that it won't necessarily be the easiest for Corbin and he will have his fair share of challenges, but that is life. We are grateful that all the hopes and dreams we have for Corbin can and undoubtedly will become a reality. To see some of the highlights of his first year, check out: https://www.youtube.com/channel/UCF83k_JU9o9OLh4QafDNZnw

A note to our Corbin,

Corbin Grey, we want you to know that you are loved beyond measure... loved by so many but so very loved by mom and dad. We want you to know that you are perfectly made, ears included. Nothing will hold you back! And we want you to know and believe that you have a real purpose in this world and we know you are going to do some big, big things!