Parker & Sebastian Shibuya
My name is Luanna and I live in Arizona. I was born in Uruguay and lived most of my life in Bethesda, Maryland. I am married and have three wonderful children and a special husband. Our daughter Sydney, now 10 years old, was our first born. Next came Parker, now 6 ½ years old, who at his pre-natal sonogram was frightfully welcomed by his sister convinced that she would be hit and her toys broken. Currently 3 ½ years old is our youngest child, Sebastian.
I loved being a mother and easily seemed to manage the lifestyle of two children. Parker grew quickly and was very sensitive to movement as an infant. He easily awoke if he was put down or he sensed movement. He met his developmental milestones on time yet we noticed he was not as vocal as his sister. Was this related to gender differences? We did not want to compare his limited babbling and playing with sounds at 8 months to his sister because we wanted to remind ourselves that every child was unique. On a car ride home from Thanksgiving vacation, my husband made the comment that he thought maybe Parker did not hear. I was shocked. He confirmed the suspicion I had secretly kept. I guess I imagined that if I did not say anything then it must just be my misperception. All the times I called Parker or said “no” and he did not turn or react, it must have been because he was so preoccupied with what he was doing. All the games we played and songs we sang and his reactions, different than Sydney’s, must have been because he was just “taking it all in”. We rushed into the house after our Thanksgiving drive home and began to bang pots and pans and yell Parker’s name from behind. He “passed” some of these tests and we were temporarily confident he heard. He had to have heard, he turned and reacted to sound, we saw it.
Well our rudimentary tests continued for a few days and our denial failed to protect us. We started to accept that something was not quite right. We called our pediatrician and she was reluctant to give us a referral for an audiogram because, I guess, she too was in denial and could not imagine Parker could not hear. I cried a great deal just sitting in the waiting room at the audiologist’s office because then I knew, without a doubt, my son was deaf.
The audiologist, out first stop in our long pre-implant journey, was wonderful and gave us all the information we needed. We became very organized and plotted our strategy. We learned all we could about implants and the implant process and made sure to schedule every appointment and procedure in a way that insured Parker’s best interest at the forefront. My husband and I were a very efficient team and worked great under this pressure. We naturally were reminded of our strengths and weaknesses and were able to support each other and move forward. We knew instantly at Parker’s diagnosis that we wanted him to have an implant. We wanted him to use speech as his major communication mode. We wanted him to speak Spanish and English like his sister. I wanted to give him part of me, my Uruguayan roots. I did not want him to be defined by his hearing loss. I wanted Parker to have the world open to him. I wanted him to interact with anyone in everyday situations across a variety of settings. We wanted him to hear and to be a part of our hearing world.
The day of the implant surgery was the most stressful. It was the day we dreaded, the one we worried about. It was the day I had run scenarios over and over in my mind. How could I lay my child on a stretcher and watch him be given anesthesia. The answer was that for this one day of surgery was a life time of unimaginable dreams and happiness that I envisioned and Parker would experience. The surgery was quick and his recovery magical. We were home from the hospital by 2 p.m. that same day and by 6 p.m., Parker was the energetic, loving, one year old we knew.
Parker heard the second day of activation. We knew this because he came running, leaping into my lap when he heard the high pitched barks of our schnauzer. He learned easily and quickly. I thought about how he began to detect sounds, recognize sounds (his sister running down the steps, the microwave beeping, a bus accelerating….) and build his auditory memory. Soon Parker was enjoying music, yelling at his sister, learning two languages, saying “Mama & Daddy”, playing with kids on the playground, watching Elmo, and going to a mainstream pre-school.
When I was pregnant with Sebastian I often thought about the possibility that he also could be deaf. Part of me was comfortable with that chance because I knew how well Parker had done and believed that this third child would also do well. However, when I thought about some of the struggles (not hearing when bathing or swimming, having to learn spoken language at a later age….) and my fears of not being there to protect Parker all of the time for his entire life (not being there when he is in college, sleeping and unable to hear the fire alarm) sadness kicked in and the sense of loss of that “perfect” child began.
Sebastian was delivered via cesarean section. It was the next day that it was his turn to have the newborn hearing screening. My husband and family were nervous although we did not speak openly about it. The technician who came to perform the newborn screening test told us he did not pass and she was sure it was due to fluid that all cesarean babies have. Well, we did not explain to her that we knew different. We did relive that parental sense of loss. Although the emotions were slightly less intense and we were better able to think about the happy and positive things, the sadness and tears felt during Parker’s diagnosis were still very present.
The day of Sebastian’s surgery was also difficult. We had experienced it once and really were not looking forward to living it again. He did just as well as Parker and we were delighted the worst was over and the best was about to begin. While Sebastian was under anesthesia we had a sample of his blood drawn and also had a medical resident draw our blood. We found out about genetic research and wanted to determine if our boys’ hearing loss had a genetic cause. We learned my husband and I are carriers of Connexin26 recessive gene. When we heard this it seemed like the world stopped for a few seconds. This meant that for generations and generations relatives from either both our mother’s and both our father’s side had been carrying the Connexin gene. No one in our families had known anyone who was deaf, how far back did it go? Amazing.
Sebastian is a very happy child who is always smiling. He just finished his first year in mainstream pre-school. He speaks Spanish and English just like his siblings. He loves to sing songs, is always making sounds, and is the comedian of the family. Parker will be starting first grade and is on or above grade level in reading as well as other subject areas. He is always asking questions, wants to figure things out, is quick to ask why, and usually tries to get his way. Parker in fact, wrote a poem in kindergarten (April 2005) and won first place first at his school and then for the school district.
We cannot imagine our lives without cochlear implants. Parker and Sebastian are able to interact with hearing peers and are not limited or defined by their hearing loss. My boys are deaf and will always be deaf. However, they are able to function in the hearing world. As parents, we wanted to give them the tools for independence and success as they define it. Luckily, Advanced Bionics allowed this to happen.