Family Stories

Parents Share Their Experiences

Melanie Bacon (Shelby County)

It wasn’t until my daughter, Morgan was six months old that she was diagnosed as having bilateral profound sensorineural hearing loss. She did not pass the newborn hearing screen in the hospital, but her Pediatrician advised that it was probably fluid and not to worry about it. He also offered to do an OAE in his office at her two week checkup. She passed this follow up hearing screen that was performed in his office, so I never took her to an Audiologist for diagnostic testing. We moved forward with life with a newborn.

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Anne Ballard (Davidson County)

I adopted my 10 year old Deaf daughter at the age of 6 and followed the advice of experts both educationally and medically. I’ve found the Deaf Education support and IEP experiences lacking in both substance and sustainability: the former is a cookie cutter that amputates her potential and spirit, the latter is a crutch to keep these kids moving through a system that continues to fail them. My daughter is smart, motivated, and eager to learn - this is not a “special education” problem, but a language deficit issue that the system is not designed to overcome. I’m eager to meet with you.


Tonya Bowman (Davidson Co.)

My daughter, Jasmyn, was born at 24 weeks. She spent 4 months in the NICU with various ups and downs throughout her stay. After her release from the NICU, we spent the next year or so, in and out of the hospital, with various medical issues. We also had multiple doctor visits and therapy appointments when not in the hospital. Jasmyn was diagnosed with hearing loss at 18 months old. She received two hearing aids (bilaterally) by age 2. She attended the Mama Lere Hearing School at Vanderbilt for 3 years. Her other challenges, including Autism Spectrum Disorder (ASD), were diagnosed by around age 6 or 7. Jasmyn is now 16 and in high school. She has 2 younger brothers. Jasmyn has benefited from caring professionals, including teachers, therapists, doctors and nurses, throughout her journey. Jasmyn has benefited from being in a deaf education program that addresses the unique needs of her hearing loss but also her other challenges as well. All children deserve access to a quality, comprehensive education from the beginning of the school journey to post-secondary opportunities.


Natalie Carlise (Davidson Co.)

Ten years ago our daughter was born looking ‘blue’ and was quickly whisked away by the nurses. We were not sure what to expect, but we knew it wasn’t this. Due to her fragile skin and other congenital anomalies, we did not get to hold her until she was three days old. Eventually, a dermatologist provided the answer: Najah was affected by ectodermal dysplasia (ED), Ankyloblepharon-Ectodermal Dysplasia-Clefting (AEC) syndrome. About that same time, she was diagnosed with bilateral conductive hearing loss. At nine months of age, Najah was fitted with a softband Cochlear Baha. We remember the first time she wore the Baha: her big brown eyes just lit-up the room, her smile was priceless. Today Najah wears her Baha with pride: the big sister to three siblings, she sings in the choir, a gymnast and an A & B Honor Roll student. She can be very timid despite her usual confidence at times; so as parents we encourage her to voice her concerns when she cannot hear or is uncomfortable about a certain situation. Najah will always have the innate ability and resources to overcome any obstacles. In her own words, “I can do anything and everything anyone else can do. I don’t sweat it.” While we advocate for Najah, that role will diminish as we allow her to spread her wings and fly high.


Gina Helms (Cheatham Co.)

I, myself, as a deaf mother am concerned about some limited range of educational options and quality of education services for deaf/hard of hearing children. I have two daughters. The older daughter is profoundly deaf and 9 years old who has been homeschooled because it’s the best option for her to education and avoid her communication barrier. She also has been involved / socialized with other deaf / hard of hearing students. This includes a child-of-a-deaf-adult (COAD) at Bridges’ After School Program (ASP). This program is great! Those kids attending ASP go to different mainstream schools and experience a variety of struggling while confronting language barriers. My heart breaks for them! Even still, many of those hearing parents don’t really willingly participate in learning sign language nor advocate for their deaf / hard of hearing children’s needs – at home or at school. My purpose in meeting you is to have some feedback about “special needs” and discuss how to achieve success in providing those services. I want deaf / hard of hearing children to be happier!


Gilda Laguna (Davidson Co.)

On a rainy Sunday in May, 2002, I gave birth to my son Alex. My pregnancy was considered high risk, but Alex was born perfect: healthy, alert, and with a head full of hair! Alex did not pass the right ear hearing screening in the hospital. We were discharged three days later. Alex had an appointment for a follow-up hearing screening three weeks later. He passed the hearing rescreening and we took home our bundle of joy.

At age two we noticed Alex’s speech was very limited. My mother noticed he did not respond to loud noises and how he spoke. We started to pay closer attention and decided to take him to the pediatrician. The doctor referred Alex for a hearing evaluation with the audiologist at Vanderbilt Bill Wilkerson Center in Nashville. He was almost two and a half then. Alex was found to have a moderate to severe hearing loss in both ears, the right ear slightly worse than the left ear.

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Susan Jones (Dickson County)

Back in 1990 when our third child was born, newborn hearing screenings were not required. Around 9 months of age we had started wondering about Emily’s hearing because if she had her back to you when you came into her room she would seem startled. The pediatrician was not concerned until she was 15 months old and not talking. A hearing test confirmed a severe to profound sensorineural bilateral hearing loss.

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Kodi Ogle (Sevier County)

We were a young couple, married for a little over a year. Josh and I were not prepared for all the joys and challenges that parenting brings. It had been a rough first pregnancy. I was on bedrest from sixteen weeks on due to preterm labor. At 26 weeks, I went in to full blown labor.

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Tashya Coleman (Henderson County)

Every parent hopes and prays to have happy, healthy, successful children. On August 17, 2001, my husband and I welcomed twin boys into the world. At ten weeks early, they had a long way to go, but they were fighters in every way. As they grew, each milestone was even sweeter than the last. It wasn't until they began to speak that we noticed a difference. So we began seeing specialists. However, specialist after specialist could not give us results or an explanation. Out of pure desperation, I called our local school for the deaf. That call ultimately led to our son Lance's diagnosis and hearing aids.

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Melanie Bacon’s Story (full text)

It wasn’t until my daughter, Morgan was six months old that she was diagnosed as having bilateral profound sensorineural hearing loss. She did not pass the newborn hearing screen in the hospital, but her Pediatrician advised that it was probably fluid and not to worry about it. He also offered to do an OAE in his office at her two week checkup. She passed this follow up hearing screen that was performed in his office, so I never took her to an Audiologist for diagnostic testing. We moved forward with life with a newborn. She started having recurring ear infections with continual fluid in her Eustachian tubes. During this first six months, I noticed that she was not turning her head toward me when I spoke to her. She was not alarmed by loud noises. At first, we just thought we were blessed with a very relaxed child, but after a while, I knew something was going on with her hearing. I figured that the almost constant fluid in her ears was probably affecting her hearing to some degree. The doctor recommended PE Tubes for the fluid, so at six months we went in to have this done and I requested that while she was sedated, they perform another ABR / hearing test. While we waited, I was extremely nervous, knowing and expecting that she would likely have a diagnosis of mild hearing loss.

Finally, the Audiologist entered the room to talk to us about the results. “Your daughter has a profound bilateral hearing loss.” First of all, I truly did not know what that even meant, but at the time, it sounded horrifying. I was shocked and scared. My mind was trying to process this new information. This was completely new territory, as I had never met a Deaf adult or known a deaf or hard of hearing child. All I could think of the first few weeks was that my baby had not heard me for the first six months of her life. All the lullabies, all the sweet “I love you’s”, not heard. My family could not understand or relate to what I was going through, so I started searching for other families who had a child who was also Deaf or hard of hearing, but the professionals serving us did not know of any groups at the time to refer me to. I felt very sad and isolated during this time.

Morgan was fit with her hearing aids at 7 months of age and for many months we struggled through trying to keep them in, allergies to ear molds, and swallowing a few batteries. Later, I had an Audiologist ask me, “Why didn’t you just order the safety lock hearing aids?” Well, I had no idea such a thing existed. I truly was depending on our Audiologist to tell us everything we needed to know, as many parents would. You don’t know what you don’t know! I also later learned there is such a thing as a Hearing Aid Dryer, and to freeze the batteries to lengthen their life, that there are water resistant hearing aids, and FM systems. Examples like these are just a few of the reasons I think it’s so important for parents to connect with other parents and for our parent perspectives to be heard by the professionals who are serving us. It’s been tremendously therapeutic for me to connect with other parents who have already “been there and done that”.

In 2010, when my daughter was two, settled in a good preschool, and used to her hearing aids, I started working to establish a chapter of Hands & Voices here in Tennessee, holding parent meetings and connecting with other families. It was extremely rewarding to see Morgan so happy playing with friends who also had hearing aids and cochlear implants.

Since August 2014, I have been the Program Coordinator for Family Voices of Tennessee PEARS (FVTN). FVTN PEARS is a statewide program funded by the TN Department of Health Newborn Hearing program that supports families and their children who are deaf or hard of hearing by offering them the opportunity to connect with a Parent Guide soon after they’ve learned their child has a hearing loss. We have Parent Guides situated across the state in all major areas, Jackson, Memphis, Nashville, Tricities, Knoxville, & Chattanooga who are trained and ready to provide parent to parent support to families. This work is so very important to me and I feel it is one of my life’s missions. To have the opportunity to provide support to parents when they are feeling so vulnerable and unsure, is a beautiful gift. My journey with my daughter has been both a blessing and at times, a bit of a struggle. She still has ear infections and a perforated ear drum from the PE tubes. She will have to have surgery at some point to repair that.

Morgan is now 8 years old, in the third grade at our neighborhood public school and performing well. She is one of only two children in the entire school who have hearing loss. She is reading at a 5th grade level, which makes me extremely proud. Her teachers, Speech Therapist, Audiologist, and ENT have been very supportive of both of us. Morgan has an FM System in all of her classes, and self-advocacy, and social goals are written in her IEP as well.

I make it a priority to coordinate play dates and sleep overs with her friends who are also deaf or hard of hearing because she does not have many deaf or hard of hearing peers at school. These friendships remind her that she is not alone.

We still have some difficult issues come up, particularly regarding self-confidence and social acceptance. Just last night, as we were snuggled up, she asked me “Why am I the only one in our family who needs hearing aids?” This is not the first time she has asked me this question. It comes up about once a year. She was very upset, and said she wished she could have normal hearing like me. My heart broke to hear this. I strive to always help her to feel confident and good about the way she is. I think she’s perfect! I talked with her a long while about it and tried to help her to feel better. I reminded her of all her wonderful friends who are like her and how we wouldn’t have met any of them if she had not been born with hearing loss. She smiled and said “even though it’s hard sometimes, Mommy, I would not want to change the way I am.”

I can honestly say that connecting with other families has been the most beneficial support for me and my daughter. Even though I know there will always be some difficult times, I know we will be able to get through them together. We have both made friendships that will last us a lifetime.

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Tashya Coleman’s Story (full text)

Every parent hopes and prays to have happy, healthy, successful children. On August 17, 2001, my husband and I welcomed twin boys into the world. At ten weeks early, they had a long way to go, but they were fighters in every way. As they grew, each milestone was even sweeter than the last. It wasn't until they began to speak that we noticed a difference. So we began seeing specialists. However, specialist after specialist could not give us results or an explanation. Out of pure desperation, I called our local school for the deaf. That call ultimately led to our son Lance's diagnosis and hearing aids.

As young parents, finding out your child is deaf is overwhelming, to say the least. Leaning on the professionals, we decided it would be best to send Lance to our local school for the deaf, as he had a lot of catching up to do. He missed the crucial years when speech develops. Lance strived in every way. Against all odds, and with his level of hearing loss, he learned to speak very well. After reaching the age in which he had to switch schools, we felt our best option for Lance was to return to our home-zone school and join his twin brother.

Living in a rural area, this transition brought great challenges. Desperately searching for ways to get our son the help he needed without being sent to a school over four hours away, we began to seek resources to guide us on this journey. As I searched, called, and emailed every possible option, it was very discouraging not to find answers, feeling alone, and constantly being turned away.

I finally stumbled upon TN Hands & Voices and immediately gave them a call. Within a few hours, I received a call from Jenny Williams. She patiently listened to my endless chatter about my son, our situation, and our goals for our son's education. Jenny offered resources and help with everything we needed. She came to IEP meetings, offered hours of conversation, ideas, and support.

After seeing Jenny's dedication and how much we needed her support at our most desperate time of need, I decided that if I could help one family like she helped us, I would be honored to be a part of an organization that makes a difference. I met the most amazing group of people at a state-wide conference and knew immediately I wanted to be a part of TN Hands & Voices! To be able to learn from those involved and serve families along with this group. Since that time I have not only become a member of TN Hands & Voices, but I have also been proud to serve on the Board of Directors. A family from a small town in Tennessee will forever be grateful to Hands & Voices! Our son is successfully striving because of their support! 

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Gilda Laguna’s Story (full text)

On a rainy Sunday in May, 2002, I gave birth to my son Alex. My pregnancy was considered high risk, but Alex was born perfect: healthy, alert, and with a head full of hair! Alex did not pass the right ear hearing screening in the hospital. We were discharged three days later. Alex had an appointment for a follow-up hearing screening three weeks later. He passed the hearing rescreening and we took home our bundle of joy.

Alex was a happy baby. He was calm and demonstrated all the skills on the doctor’s checklist. Alex excelled at music: he used all the right steps while dancing to rap, salsa, country, and ballroom. Our family was entertained watching Alex dance. He was so cute!

At age two we noticed Alex’s speech was very limited. My mother noticed he did not respond to loud noises and how he spoke. We started to pay closer attention and decided to take him to the pediatrician. The doctor referred Alex for a hearing evaluation with the audiologist at Vanderbilt Bill Wilkerson Center in Nashville. He was almost two and a half then. Alex was found to have a moderate to severe hearing loss in both ears, the right ear slightly worse than the left ear.

After Alex’s diagnosis we were advised that he needed two hearing aids. He was almost three when he started wearing hearing aids on each ear. At the same time we started services with the TN Early Intervention Service (TEIS). Our family received audiology, speech and language, and an Early Interventionist (EI) that came to our home. Alex attended a preschool program designed just for children who are deaf or hard of hearing. Everyone observed the hearing aids did not help him as much as we had hoped. That is when Alex was evaluated as a candidate for a cochlear implant.

In August, 2005, when the implant was turned on, Alex heard my voice! His little face lit up. Things really began to change then. Alex was considered hard-of-hearing, not deaf.

Alex attended the preschool program until he was five and then began to attend a public elementary school offering support for children with hearing loss. Alex spent 1st – 4th grade at that school with a Deaf Educator and Speech / Language Therapist. Twice a week after school I took him to private speech therapy. Alex was also tutored in reading for several years.

Alex has always been a happy, charming boy. His hearing impairment has not prevented him from shinning. He is very involved in football, soccer, and other sports in the community and the public schools. Alex spends time with friends who also wear hearing aids / cochlear implants in after school programs Monday – Thursday, summer programs, and other activities. He learned to use sign language at these programs when he about eight. Learning sign language and being with friends who are like him has made a world of difference for him. Alex is a better communicator and understands what he hears and reads so much better. Having a sign language interpreter in his classes in middle school has helped him with learning.

Alex is very excited about attending high school in 2017 – 2018. He has made lots of plans, especially with being involved in sports. Alex is a natural leader and motivated to do his best.

As his mother, one of my biggest concerns for Alex has always been academic progress. Our family has done whatever we could do to prevent delays. We are doing the best we can with what we have to work with daily. As his mother, I have been very involved with his teachers, administrators, and Hearing Services Program staff. We communicate all the time about Alex.

Now my biggest concern for Alex is that he has a high quality program, qualified teachers, and Interpreters for the Deaf at a public school. Alex will learn and grow academically if the program is designed specifically to meet his unique needs. For the past several years I have felt the public school has not been there for my son. There have been so many inconsistencies in the curriculum, ways of teaching students, multiple changes in Deaf Educators / Interpreters for the Deaf, and the regular education teachers / administrators have not provided the supports needed.

Children with hearing impairment CAN achieve academically and reach their potential. There must be a comprehensive, high quality program with options to meet all student needs. They need parents, community, and the school system to build it together and cooperate for the benefit of our children.

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Susan Jones’ Story (full text)

Back in 1990 when our third child was born, newborn hearing screenings were not required. Around 9 months of age we had started wondering about Emily’s hearing because if she had her back to you when you came into her room she would seem startled. The pediatrician was not concerned until she was 15 months old and not talking. A hearing test confirmed a severe to profound sensorineural bilateral hearing loss.

That was devastating because we had no idea how it would affect her future or what we needed to do. There was also initially some denial about the severity. Emily was fitted with hearing aids and started speech therapy, group therapy and home therapy. Strong willed would have been a kind description of our daughter. Ultimately I believe this has contributed to her success, but at the time very challenging! She did not like wearing the hearing aids! Our audiologist suggested doing only oral for one year and then adding sign if she wasn’t progressing sufficiently, so we went with that. We had no experience with hearing loss other than a few older family members with hearing loss due to old age. We did not know anyone near us with children with hearing loss and there wasn’t a formal parent program like Family Voices of TN PEARS or Hands & Voices for us to be able to meet other families.

There were a few other moms over the years I met at group therapy that I became good friends with and we are friends to this day. We were our own support group. We were very fortunate to have a great Special Ed director who always tried to do everything we asked for but I would be so nervous about the M-TEAM meetings I would almost feel sick. Every year while we were asking for outside speech therapy I would be concerned that would be the year they said they would no longer pay for it. Many of my friends were not as fortunate with their school systems as we were and I heard many horror stories about the battles they had to fight to get services for their kids. Sometimes when you live in a little town it is hard for a school to find the appropriate people to provide what is needed. We were so fortunate to have great people working with Emily and us that also advocated for her and empowered us to advocate for her as well.

We have tried not to treat her differently from her brothers because of her hearing loss but her brothers would probably not agree. Having 2 boys 5 and 3 ½ years older than Emily created challenges in other ways, especially in the summers. They did not appreciate the trips to speech! Once, on the first day of going in the summer, I let the boys go outside by themselves to play, I was called out by the director because my boys were throwing pears at the squirrels. (In the country, squirrels are considered pests!)

When it came time for Emily to start school we determined she would use an FM system and have an aide. The next year we moved her to the school where the Deaf Ed teacher was so she could have more access to her. Our Deaf Ed teacher was great! She didn’t let Emily get away with anything and expected what she was capable of. We continued the hour long trips to have speech several days a week thru 5th grade. In the latter part of first grade something was causing the benefit from the hearing aids to deteriorate. Emily started saying “let me see your face” when you talked to her so she could read your lips. That summer, when she was turning 8, we had a cochlear implant (back then they only did 1). I had already been considering it after seeing the great benefit a friend of hers had from getting one. What amazing results she had! One day we were in a parking lot and a plane flew overhead and she said “what is that noise?” I was told continuing speech therapy was critical to the success of her implant so we continued the drive until she started 6th grade and school sports. She did continue speech at school until into high school.

Emily has always been a good advocate for herself and does not like attention drawn to her because of her hearing loss. I think it is so important for someone to be able to advocate for themselves. If she didn’t understand something she would ask the teacher and through middle school the Deaf Ed teacher would pull her to work on specific subjects as well. Halfway thru her junior year in high school she decided she no longer needed the aide. We said OK and thought this would be a good trial since she was planning to go to college. Also, if it did not work as planned she could add her back the next year.

Emily started playing rec league sports at age 4. In high school Emily excelled in soccer (we had to replace a processor due to corrosion) and cross country. She received a scholarship to run cross country for college and graduated 7th in her high school class. She was even one of 3 to receive a faculty selected award and had to speak at graduation. Needless to say we are so proud of all she has accomplished, especially in spite of her challenges.

Fast forward to college and now… The Disabilities Office Director was a firm believer in self advocacy. She required this of all the students she worked with which was no problem for Emily because she was already good at this. Each student was required to determine what accommodations they needed and present a letter to their professors. Originally Emily planned on becoming a Pharmacist and quickly changed to Physical Therapy—which I thought was a great fit. She is a “people person” and working with someone one on one is best for communicating.

Her junior year an audiologist friend asked if she had considered becoming an audiologist. She and I both thought there would be a lot of difficulties with that. After talking to her audiologist and then meeting with a deaf audiologist her decision was made. Emily has just finished her 4th year at UT Knoxville and doing her one year internship. She is the first student in the program with a severe hearing loss. Having worked in a clinic from the first semester, she has figured out ways to compensate and make modifications to accommodate her needs. Also, 1 ½ years ago she had a second CI and has been very pleased with the results. After a one year internship working full time in a clinic this next school year she will receive her Doctor of Audiology degree. Who would have ever thought at the time of her diagnosis she would end up being an audiologist herself!

Each child is different, as anyone with more than 1 child knows, but do not underestimate what they can accomplish.

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Kodi Ogle’s Story (full text)

We were a young couple, married for a little over a year. Josh and I were not prepared for all the joys and challenges that parenting brings. It had been a rough first pregnancy. I was on bedrest from sixteen weeks on due to preterm labor. At 26 weeks, I went in to full blown labor. Luckily, after some very strong medications and an epidural, they were able to stop my contractions. I had dilated to 6 cm. Permanent bedrest was imminent now. They kept me in the hospital for a month. That was the longest, loneliest month I had ever experienced. After proving that I would be able to abide by the strict bedrest policy, they allowed me to go home for the remainder of my pregnancy. I had appointments every other day at the specialist’s office to monitor our baby’s progress.

On a Monday in May, my birthday to be exact, they scheduled an amniocentesis to see if our baby’s lungs were developed enough to deliver. I would be 36 weeks that day. The likelihood that she would require a stay in the NICU was very low. I showed up that morning after a very excited, nerve racking, anxious weekend, feeling overwhelmed already. As I walked in to the doctor’s room, I saw this huge needle. I was shaking. Then they got me ready and the doctor did his initial exam. He looked at me and said, “It doesn’t matter if this little girl’s lungs are ready, you are at 8 cm! Get downstairs now!” It was baby time! I had prepared for this, I thought. Packed that diaper bag over and over, hoping to have everything in it that she could possibly need. Suddenly, I felt like I needed more time to prepare. I needed another bag. I needed… more time! Was I ready? Were we ready?

Little did I know we couldn’t have prepared for how this day would go no matter what we packed. After hours of labor. An epidural that did not work, and a few other small complications, our little girl, Haylie, was born at 3:24 that afternoon weighing 5lbs, 7oz. I heard her cry as she entered this world. They placed her on my chest. My world all of sudden was in my arms. It gave new meaning to the saying, “having the weight of the world on your shoulders”. Next thing I know, a team of doctors in yellow scrubs runs in. The nurses are all shouting at the same time. I can’t make out what they are saying. They take Haylie from my arms and hand her to the “yellow team”. One nurse takes a moment to tell me that Haylie’s cry is weak. They are just going to evaluate her. They put Haylie in her tiny little cradle in the side of the room with an oxygen mask. The yellow team then decides to take her to the NICU for more tests. My heart sank. I wanted my baby.

Haylie was in the intermediate NICU for 3 days with low oxygen levels, brady spells, among other complications. After days of the nurses telling me this was all probably from fluid in her lungs, they finally decided to run scans. Haylie’s left lung had collapsed from a pneumothorax. A little air sac had a hole in it. Likely from her taking too deep of a breath when she was born. She was moved to another NICU where they could better handle her severe situation. She had her first surgery to release the air in her chest cavity. They hooked her up to more machines. The beeps became typical background noise.

After 7 days in the NICU, she was starting to improve drastically. She was even able to learn to feed! They started running all of her typical newborn tests. My husband and I were required to stay overnight in the hospital with Haylie to learn how to care for our new preemie. 10 days had passed since Haylie was born, and we were finally allowed to go home. She had passed her newborn hearing screen. They said she was ready to go home with us. We felt like we knew what we were doing after staying overnight and receiving instructional videos and classes. We didn’t know that we didn’t know what we were doing at all. It was just wonderful to have our baby in our arms. Haylie had multiple appointments in the next few months to check on her progress. All of the doctors told us she was doing great. She was a typically developing kiddo. As we approached her first birthday, we realized that Haylie was not making words like she should be. We brought this up at her check-up. The doctor told us this was typical. She may just be a late bloomer and to give it time. We felt like something wasn’t right. Being a young mom, I didn’t know to trust that instinct. Instead, I believed the doctor.

As the months went by, my husband and I would realize that Haylie didn’t always startle to loud sounds. She didn’t hear her grandfather’s loud truck pull up in the driveway or him sneak up behind her and say “boo”. Something was wrong. We went to her 18 month check-up. At this time, I’m a few months pregnant with her brother. Haylie had started saying “buh” for “book” and “ba” for “ball”. Since she had shown some improvement, the doctor still was not worried. We were. The doctor sent us home and told us to be patient. I didn’t have patience. Our baby was trying, but not able to accomplish making words. Something needed to be checked. The doctor needed to do something. The doctor brushed off my concerns. Since I was pregnant with her brother, with whom labor started at 25 weeks and continued just like my pregnancy with Haylie, I was not able to stand and argue or take Haylie for a second opinion.

That January, our son, Tyler, was born at 35 weeks. He weighed 5lbs 5oz. His lungs were healthy. He was able to stay in the room with me. I never put him down! The nurses would come in and reprimand me for holding him all the time. Even as I would fall asleep. I was enjoying my newborn in my arms. The nurses came in and did a newborn hearing screen. Tyler failed. I was so overjoyed with being able to hold my little guy that this news did not sink in. It did not help that the nurse told us not to worry. She said, “It’s probably just fluid in his ears. Don’t worry about it. He looks healthy”. I followed the nurse’s advice and did not worry. We snuggled our babies and enjoyed being a family, together.

We went to Tyler’s first check up with an arm full of information from the hospital. In that information, his failed hearing screen report. The doctor saw this and said, “Let’s test him. Since you have had concerns about sister, let’s test her as well.” I agreed. Still thinking this may just be fluid, we were not as worried, at first. As the days passed and we waited for the appointment, my husband and I became more observant. It became more of a reality that our children might have a hearing loss.

Nervous, scared, feeling every emotion possible, we bring Haylie and newborn Tyler to their hearing rescreen. It didn’t take long for the doctor to have the answers for us. Within minutes we were told that both of our children were deaf. Our family does not have anyone else that we know of with a hearing loss. How could this be? My husband drove the hour long drive home in silence. I cried hysterically. We didn’t know anything. I started questioning my children’s future. Would they be able to communicate? Would they be able to work? Could they learn to drive? I called my mom, asking her all of this, hoping she would know. She was just as clueless and emotional as I was, but had hope. We needed that hope. I looked back in the backseat at our sweet babies and said, “I love you!”. Then I cried even more. How many I love you’s have they missed? Did they even know I loved them? Could they feel it? Again, I had that sinking feeling and I wanted my babies. I wanted to be in their world.

Within a few short weeks, we had their first audiology appointment. The audiologist was amazing. We left with hands full of papers telling us about the different types of hearing loss. There was outer ear, middle ear, inner ear, congenital, acquired. We felt like we knew something. Ha. We didn’t know that we didn’t know anything. We ordered their first hearing aids.

Two days before Haylie’s second birthday, Haylie and Tyler received their very first hearing aids. Powder blue and precious pink. We were so excited. Haylie had her hearing aids on quite a bit. Tyler, being 4 months old, mostly used his as teething devices. When they would wear them, we thought we saw reaction from them. They started speech therapy. For Haylie, we went 4 days a week. Two days of group therapy, 3 days of personal therapy. We lived in that office. Haylie’s progress was inconsistent at best. Her therapist would have her tested in the booth every other week. We couldn’t figure out why she would respond some days and not at all on other days. All the other kids in her therapy group were receiving cochlear implants and doing well. The moms would look at me with pity as we watched my daughter struggle. I still had that sinking feeling. I wanted my baby! I wanted to know what was going on. She was in another world. She had tantrums and we couldn’t communicate to find out how she was feeling or what she wanted. We were told not to use sign language (which we didn’t know anyway) because our children would become lazy and not learn to rely on their auditory skills. So we didn’t. We were all frustrated and heart broke.

That December, their ENT performed a sedated ABR as well as an MRI. They put electrodes on their head, little earphones in their ears and test the brains response to sound. My husband and I sat outside in the lobby for hours waiting for the results. Tyler was 11 months old, Haylie was 2 and ½ years old. They told us they would have to review the test and would get back with us. The next week we went to therapy like always. Our daughter’s speech therapist came in and sat down beside me. She asked about the ABR. I told her we did not know the results. She then tells me that Haylie has Auditory Neuropathy. My brain was trying to remember and sort through the information from our initial audiology visit like a filing cabinet. Nope. Auditory Neuropathy was not listed. This couldn’t be. We went back to their ENT. Both babies had Auditory Neuropathy. Their inner ear hair cells in the cochlea, auditory nerve and brain fire at different times. They may be able to hear us sometimes. Only times, only static. Sometimes, not at all. Tyler was progressing fairly well with his hearing aids. Haylie was not. Her ENT recommended a Cochlear Implant.

I was now pregnant with our third child. I had preterm labor from 24 weeks on with him. Our children are quite competitive. I should have known that they would compete from the beginning to see who could arrive the earliest. Our youngest, Brayden, won. He was born at 34 weeks weighing 5lbs, 14oz. His lungs were not fully developed. They took him from my chest just like they did with Haylie. He was immediately given oxygen and rushed to the NICU. He also had complications during his stay. It was not easy because I now had two other children at home and could not be at the NICU every waking hour. The nurses took my calls, even at 3am. I was at the hospital every day as soon as my husband got off work. This was not enough. I wanted my baby. He took a little longer to learn to feed. The GI feeding tube required less effort on his part. We had to convince him that nursing was the best option. After 12 days, he finally got it and could come home with us. Before they let him go, they did the ABR in the NICU. Brayden also had Auditory Neuropathy.

Making this huge decision to get the implant was not the easiest. Especially having a newborn at home, and two toddlers. My brain did not feel capable of this decision. After seeing all the other children in Haylie’s group therapy and hearing the doctor sing this device’s praises, and watching Haylie struggle, we decided to try it. In October, at 3 years old, Haylie received her cochlear implant. Her implant was activated in November.

We resumed therapy as soon as she was activated. We still were not seeing progress. Her therapist sat down with me again. She asked if we had thought about preschools yet. Well, no. We were focused on speech. She started teaching Haylie and our family a few “bridge signs”. We learned, “mom”, “dad”, “drink”, “eat”, “no” and “potty”. Haylie was picking these up. We at least knew what she needed.

During all of this, we started looking at preschools. The one offered in our district was not a good fit at all. Then, we went to the school for the Deaf. The preschool teacher, Marti, came over to us, took Haylie’s hand and they joined story time. Haylie sat there soaking it all up. By the end of the day, they gave Haylie her own sign name. An “H” on your right cheek. Haylie picked this sign up and had to show us. It was the first time in 3 years that our daughter could tell us her name. She knew her name! We knew, this is the school for her! She started preschool that January, at 3 ½ years old. I still remember her first day with her boots covered in fur with pompoms that dangled as she stood in that classroom like a big girl. I was a crying mess. The teachers helped us learn to sign. We took classes at the school. I read every book I could find and would look up the signs to go with them so I could learn her new language as fast as possible. I picked Haylie up from school one day, about a week after she started. She looked at me and signed, “Marti is my friend”. Again, I burst in to tears. This was the first time in 3 years that I finally felt like I had my baby! I could finally be part of her world! It wasn’t just her immediate needs. I could see her future. It was a bright one! My head was filled with not just visions of us shopping and talking, but dreams I could finally see as a reality for her. She could be anything she wants to be! And, we could be a whole family now. This day, these feelings, are permanently etched in my heart. I am so thankful to the school, the teachers, her therapist, for giving our daughter the opportunity to have a life worth living.

Back to the boys. With Haylie at the school for the deaf, our family was learning sign language. Only having two children at home, I felt relieved enough to start early intervention services. Tyler and Brayden’s first early interventionist came out to the house every week. She helped us learn sign language as well. Tyler and Brayden started OT and PT as well as continuing with speech. Brayden had his very first hearing aids. Deep blue. It was a lot of work. Seeing Haylie’s progress, we knew we could make it. We kept pushing through. We struggled to keep the hearing aids on the boys.

Tyler started preschool at TN School for the Deaf on his 3rd birthday. He was very verbal. His hearing loss was more moderate. Haylie and Brayden were in the profound range. Brayden never responded to sound. Haylie could even understand some spoken words some days with her Cochlear Implant. Most days, she had sound awareness. Other days, she still couldn’t hear us. Each of our kiddos, even though they have the same diagnosis, are completely different. We wondered if Tyler would remain at TSD or be mainstreamed. He has other diagnoses on top of his hearing loss. He has asthma, Celiac disease, among others. His hearing loss has progressively become most severe. We are thankful that we learned sign language with him very early on.

Brayden started preschool at TSD on his third birthday as well. He has seizures, brain damage, sensory processing disorder and asthma on top of his hearing loss. His progress has been a little slower than his older siblings. He challenges everything we thought we knew about hearing loss, about raising children, about life.

Fast forward to the present, Haylie is now 12 years old. Tyler is 10 and Brayden just turned 9. Haylie is in 7th grade, doing well. She had to have her implant removed 3 years ago but is doing wonderful. She even cheered with our local rec league cheer squad. This year she is taking on volleyball and swimming. Tyler is in 6th grade, working on a higher grade level in some areas. He is very bright and loves reading. He has played football for our local rec league for the past two years. This year, he started playing football with the middle school team at TSD. Basketball is next on his list. Brayden just started 3rd grade. He struggles through most subjects that involve reading. However, he has a great group of teachers and therapists working alongside of him to help him succeed. 79

We have been blessed. Our children are our world. There is not a day that goes by that we are not thankful for them. I am thankful for the beautiful language they use. I am thankful for all the therapists, teachers, interventionists, doctors and organizations that have helped us, and help us to this day. They gave us the strength, the faith to get through some of those dark times where we just wanted our babies and couldn’t see the light at the end of the tunnel. Our children are actually able to reach their highest potential. And we, as a family, get to be there together, celebrating, learning, encouraging them through their journey.

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