The Thomas Family: A Story of Passionate Perseverance in Parenting
She is Perfect
I looked out through the windshield wipers and foggy mists of a drizzly December morning in Oregon and pictured my little girl who was about to be born. My husband was driving me to the hospital because my bag of waters had broken at 37 weeks. I had thought my first child would be born during Christmas break before my husband’s last semester of law school. She decided to join us during finals week instead.
I was the happiest laboring woman entering the birthing center. This was not only because I was about to have my first child and was so far in minimal pain, but because I knew I would be released from the suffering I endured during my pregnancy. I had a disease called hyperemesis gravidarum (HG) that lasted the entire duration of pregnancy. HG is a debilitating and potentially life-threatening pregnancy disease with severe nausea and vomiting. I had felt like I had food poisoning, a migraine and mononucleosis all at once for the past eight months and was more than ready to return to normal life.
After a long and difficult labor, Sophie entered the world screaming before she had even been delivered all the way. This has been a great metaphor for her personality as she has been the most spirited and determined of souls.
The next morning, I was in a post-partum delirium phase. I had little sleep for two days, a physically exhausting labor, was recovering from a post-partum hemorrhage and had a baby who screamed the entire first night. I had been afraid if I asked the nurses to take her I would look like a bad mom. This was a fear I didn’t have with the subsequent two births.
A nurse entered my room to tell me that my daughter had “referred” on the hearing screening… whatever that meant. However, their screening machine was not working correctly and she probably had a lot of fluid in her ears. She told me that I “might want to follow up later, just to make sure everything is okay.”
Once I got home, I looked through information for an audiologist. I found one and called and made an appointment. I was irritated that I couldn’t bring her in for a month, but figured that this was just another newborn check to cross of my list and there was nothing to worry about. After all, when our ironing board had crashed to the ground, she jumped so I was sure she could hear.
She was what could be categorized as a “difficult” or “spirited” baby who cried all the time, never slept and was most unhappy despite my valiant attempts at attachment parenting and any other method I thought would give me any peace. Before I knew it, that hearing test appointment came up. We were so unconcerned I went alone to the appointment while Mike was in class. After sitting in a soundbooth with her for what seemed forever, the audiologist came in. Looking at the audiologist’s expression, instantly my world changed forever. She said what it looked like she was going to say: “Your daughter has a hearing loss.”
I started crying and was so embarrassed to be totally losing it in front of these strangers. As my tears dampened the blanket she was swaddled in, I looked at her perfect sleeping face and promised her that she was still perfect. As the audiologist was saying something I wasn’t listening to anymore, I promised her that this wouldn’t matter. With every rock as I swayed back and forth I was saying to her, or really to myself, “it’ll be okay, it’ll be okay, it’ll be okay.”
The hardest thing was to leave that appointment and call my husband and family to share the news. They all took it with varying degrees of disbelief, grief, anger and shock. My husband went from shocked to totally accepting of this new reality very swiftly. I grieved more slowly, but within a few weeks, also reached a point of peaceful acceptance and started my path of research, advocacy and just the normal life of any mom with a first baby.
As the news spread, I began to be treated like there was a great tragedy in my family. More like a death had occurred, rather than a birth. I was dismayed not to be able to share my joy of the birth of this beautiful baby girl. People just pitied her, pitied me and I hated that.
She was perfect, why couldn’t anyone see that?
Choosing Between “Camps”
Sophie was fitted with hearing aids by 6-weeks-old and we immediately began to receive services. I went on a compulsive research campaign reading everything I could find. I talked to many professionals in the field and all the deaf or hard-of-hearing people I could find. I wanted a plan of action and wanted it now.
Immediately we all wanted answers as to why she was deaf. There was no deafness in either side of the family. She was tested for cytomegalovirus (CMV) and did have an infection that we were able to trace back in retrospect to my 8th month of pregnancy. I had been so sick in general that I had not identified at the time it being more than the usual constant illness of my pregnancy.
Not knowing where we would end up, we immediately began learning sign language. We also knew we wanted her to hear or speak if at all possible and begin simultaneously learning about how to best augment that. I figured: why not have it all? Why put all my eggs in one basket when I didn’t know which road would be bumpier?
I was constantly confused by the various “camps” that wanted me to choose one side or the other. I was warned that she’d never learn to speak if I signed to her. I also was warned that if she learned to speak the Deaf culture would reject her and I should accept her as she was.
Five months after she was born, we moved back home to Utah for two months and then on to Colorado for my husband’s work after law school. This made for a difficult time finding new audiologists and service providers every few months. We eventually chose bilingualism as our family goal.
Bilateral Cochlear Implantation
Sophie did have a progressive loss and by the age of two had profound hearing loss in both ears. Mike and I had already researched and discussed what we would do in the event that she lost her hearing entirely. We immediately started the candidacy process for cochlear implants.
At 2 ½ she received a cochlear implant in her “worse” ear. At the time, medical insurance was only paying for one and we didn’t question it. She continued to wear a hearing aid on the other ear.
Within a week she recognized her name again and within a month she was learning new words. Sophie took off and was a wonder.
When Sophie was 3 ½, Sarah joined our family. As it is nearly impossible to have another child with hearing loss due to CMV, we were not worried. I was glad to make it through yet another difficult pregnancy. Sarah received hearing tests at birth and again at one year to make sure she had no hearing issues.
“That’s Much Better.”
Sophie was disappointed not to have a deaf brother as she had specifically requested. It softened the blow that I had her choose her sister’s sign name. It will forever be a mark of sisterly love that she pronounced the baby “beautiful,” and chose the sign “beautiful” with an /s/ as her sister’s sign name.
At age 6 ½ Sophie received a second cochlear implant, now that insurance was allowing this. She had really been asking for a second one and we hoped that, although she did wonderfully, this would improve her ability to hear with background noise and learn to better locate sounds. We knew that even though she appeared to perform even above the abilities of a “typical” child, it was a lot of extra work for her to listen and process what she heard. We wanted to do anything that would make it easier for her.
When Sophie’s second implant was activated she paused for a minute and then said “that’s much better.” We all laughed because we had expected her to not like the second implant or be frightened by it. She just accepted it in a matter-of-fact way and moved on. Within two months she was doing even better with her second implant alone that she did with her first. This was probably because it had been the better ear.
“We’ll Get Matching Earmolds!”
Another 3 1/2 years later we were blessed to complete our family with another little girl. It was the farthest thing from my mind that there could be any hearing complications.
I had deep concerns about the baby’s health and mine due to the severity of the hyperemesis gravidarum this time around. It was traumatic for me and I had only gained 11 pounds on my already petite frame during the pregnancy. My bones had also come apart due to the hormone Relaxin that is active during pregnancy, particularly my pelvic bones causing pain and limited mobility.
I rejoiced when I had the easiest birth of the three. An hour after birth, I felt totally well again and ordered so much food that the staff laughed at me.
Two nights later they brought her back after testing and I sleepily stated “she passed the hearing screening, right?” When they said “no, but we think she probably just has fluid in her ears,” I sat straight up in bed.
Initially I thought I was one of the unlucky parents with a false positive. It would figure that would happen to me after already having a child with hearing loss. But, a few weeks later it was confirmed that Sylvia had a profound hearing loss in both ears.
This time the people in the room were far from strangers to me. This time I did not fall apart and cry, at least at first. I was just totally shocked. How could this be? A genetic test revealed that my husband and I carry a recessive autosomal genetic mutation called Connexin 26. It also revealed that the real reason my oldest was deaf was due to this. This was also a shock as everything I believed all these years was not true.
The highlight in discovering Sylvia’s deafness was being able to tell Sophie that her sister was deaf. She had again been hoping for a deaf brother and was again disappointed. When I told her the news she paused for a second and then a broad grin spread across her face. “That’s great Mom! This is wonderful news! We will get matching ear molds!” she said in one breath before rushing upstairs for her after-school snack.
Not only did she get to pick another sign name, but she also got to pick out matching ear molds. They were silver and pink sparkles. Now there was someone “like her” in the family and deafness to Sophie is a very positive thing. Now Sarah, already the middle child of three sisters, felt left out.
Range of Emotions with Diagnosis
Immediately my brain went into overload. I was thinking about how this was going to effect my time, my pocketbook and all the potential problems stretching from today all the way into adulthood for Sylvia. It felt very unfair as if I had my “quota” of children who required additional attention. With the first baby, I was frightened because of what I didn’t know. This time I felt even more frightened because I knew too much.
I was surprised that I had a much more difficult time dealing with the diagnosis the second time around, when I thought it would be easier. Everyone else figured I also had it made as I knew what to do. I suffered from Post-Partum Depression/Post-traumatic Stress Disorder (PPD/PTSD) as a combination of the difficult pregnancy, my sensitivity to the hormonal drop and this additional stress.
I now feel as if I’ve experienced both extremes in the emotional experience of discovering your child has a hearing loss. First, I had a quick passing of the grief stages and move toward acceptance and even enjoying having a child with a hearing loss. Second, I felt the depths of the more devastating sadness and anxiety that can come from the identification.
The Journey Continues
Sylvia was the impetus for refreshing and recharging our signing skills. At 14-months-old, Sylvia received bilateral cochlear implants in the same operation. It seemed to make so much more sense to just do both ears in the same surgery. I wondered why it hadn’t been thought of in the first place.
Sophie is a thriving in a gifted and talented program. She is exceptional in many different ways apart from hearing loss. Parenting Sophie has required me to draw deep down into my well of perseverance and also let go and appreciate her unique gifts.
Let me not neglect to mention my hearing child, Sarah, who is a sensitive, sweet and artistic soul. She loves to draw and take ballet classes from Mom.
In the end you don’t have a “deaf or hard-of-hearing child” but a child who may also happen to be deaf or hard-of-hearing. Parenting a child with a hearing loss isn’t something you take care of and check off your list, but a continual journey. It is a journey of love, of hope, of perseverance and can yield the sweetest of rewards.