I thought my life was perfect…

As lives go I thought mine was pretty close to perfect, I was happily married, had two beautiful children, had just quit my job to stay home with the kids and we had a nice home. My mother was a special education teacher who loved my children to death. She lived in Michigan but always spent quality time with her grandkids. One weekend she came for a visit but it was a weekend that would start me on the roller coaster ride of my life.

That Sunday before she packed up to leave my mom asked me to sit down and talk to her, I got that instant pit in my stomach like …”what’s wrong??” She told me that she noticed something about my daughter that had her concerned. She noticed that Aubrey didn’t appear to be hearing some things. I looked at her in amazement and thought she was crazy…my daughter was about 6 months old and this wasn’t my first child. Certainly I, her mother, would notice if she wasn’t hearing. Well my mom asked me to “humor her” and take Aubrey, in for a hearing test. She pressed the issue and I knew she was serious so I promised her I would call my doctor and make an appointment.

Luckily for me my pediatrician was a wonderful woman who said, “I’m not qualified to really test her hearing, let’s refer you to a specialist.” So many kids get identified later than they should because pediatricians think they know it all, but I’m here to tell you specialized testing is a must. Since my daughter was born, it is now mandatory that a hearing screening is done on infants before they go home from the hospital. I wish that screening was in place when Aubrey was born!

So I get my referral and make my appointment with the ENT doctor. Now I’m walking around the house testing her hearing almost every second she is awake, it’s driving me nuts. I’m thinking that maybe there is fluid in her ears and she might need tubes, nothing really appeared to be wrong with her. Finally, the day of her appointment came. My husband asked me if he needed to go with us and I told him not to worry about it since it probably wasn’t going to be a big deal I would just take her myself, words that would come back to haunt me. The doctor did a complete physical check of her ears and everything appeared normal. I was relieved but now more nervous because this ruled out fluid in her hears and tubes as being the answer if there was a problem. The doctor had an audiologist on staff who we then met with to test her hearing in the sound booth. I will never forget what if felt like having my 6 month old daughter sitting on my lap hoping and praying she would pass with flying colors. We went through the test and nervously I watched the audiologist looking for any clues as to what he was thinking. Finally, I sat down with the doctor and the audiologist in one room and received those ominous words for the first time. “We think your daughter may have a severe to profound hearing loss and we need to send her for an auditory brainstem test at Children’s Memorial Hospital.” Severe to profound hearing loss, severe to profound hearing loss, severe to profound hearing loss…. you could have blown me over with a feather. It’s like I heard the words but they didn’t make any sense. The pit in my stomach made me instantly feel like I wanted to throw up. A deaf daughter, it can’t be!! Tears welled up in my eyes and the doctor tried to be of comfort but I could see what I viewed as pity in his eyes. He gave me the information on who to contact at Children’s and told me to take my time in the room and leave when I was ready. I stood in that room holding my beautiful daughter with tears streaming down my face. My knees were weak and I wanted to throw up, I wished so much that my husband had been there with me. Now I had to try to drive home and think of a way to explain all of this to him as my grief welled up again and again inside of me. That was the longest and shortest ride of my life. I got home and tried to explain everything I had been told to my husband, we both cried and panicked about what all of this meant. I called Children’s Memorial to schedule the test and was told it would be about a month before they could get us in for the testing. I instantly began bawling on the phone to the unsuspecting receptionist. I told her that I couldn’t wait a month for this test to find out if my daughter was deaf, I begged and pleaded for them to try to get her in sooner but no openings were available. I hung up with her exhausted and depressed but small miracles are always happening around us. She called me back later that day and told me someone had canceled and that I could bring her in the next day. I felt elated but scared to death that more bad news loomed around the corner.

My husband and I packed up and drove into Chicago with our daughter on the day of the testing. It’s still all so clear to me and it’s been almost 11 years ago when this all happened. They gave Aubrey some medicine to make her fall asleep, they hooked up the electrodes to her head and put the earphones into her ears. The testing began and it seemed to take forever but I’m sure it was less than an hour. We then found ourselves sitting in a room after the testing nervously awaiting what the test results showed. Our worst fears were realized when we heard those words again….severe to profound bilateral, sensorineural hearing loss. The audiologist said, “We can’t be sure she will even be able to talk”….words that slapped me hard in the face. I instantly began to feel the anger building up inside of me. Why is this happening to us, what did we do to deserve this, why is my daughter going to have to go though life like this?? The questions were never-ending and my emotions were all over the map. The audiologist explained that they would be ordering hearing aids for my daughter and that they would be in, in a few weeks…more waiting. The only advice that I was given from Children’s Memorial was to contact my school district to see if they can do anything and they gave my a brochure from the John Tracy Clinic in California. I felt like I was in the middle of a nightmare I couldn’t wake up from.

That test was on a Friday and I went home and cried for the rest of the night and all the next day. I held Aubrey sobbing, thinking about all the things she might not be able to do because of her deafness. I’ll admit I was very naïve about deafness, I didn’t know much and the stereotypes scared me to death. Deaf and DUMB…..those words echoed in my mind…..how will she get though school? Will she ever be able to go to college, will she ever be able to have a career? She will never be able to chat with her girlfriends on the phone and talk about boys and school and parties. Will she ever get married and have children and if she does, will they be deaf? I sobbed harder and harder thinking of all the things she probably would never do…..little did I know how much I would learn and how wrong I was in my thinking. It was weird, just two days after she was diagnosed and the gut wrenching phone calls were made to our family members that I had a revelation come over me. Okay, my daughter was deaf but it WASN’T the end of the world. I jumped out of bed that morning feeling like I was on a mission and no one was going to stop me. My first thing to do that day was to go to my local library. I must have brought home about 20 books on deafness, hearing loss and sign language. I started a notebook of questions that I wanted to ask the audiologist that was working with us. Feverishly I poured over these books and slowly realized deafness is devastating but it’s not the end of the world. I remember thinking that the books were interesting but the one thing I wanted more than anything was to talk to another parent who had a deaf child. THAT was the information I wanted more than anything….to talk to someone who actually knows what our family was going through.

That Monday I called my school district and they told me to contact Easter Seals in Joliet. I called them that day and got an appointment for a screening. From them I was given a lot more information on deafness and was given the phone number to the Center for Independent Living, a phone call that would change how I viewed deafness forever and begin a friendship that means the world to me. I called the CIL and talked via relay to an employee who was deaf. This was all very strange to me. Her name was Karen and she planned to come over and meet me and Aubrey and talk to us about deafness and what it all meant. I remember her coming over and meeting us and feeling instantly comfortable with her. She gave us all kinds of information on learning different communication methods and educating deaf children. We were blown away with all the information but what blew me away more was Karen. She spoke in a clear voice that we could understand but she was profoundly deaf. Here she was a deaf woman with a masters degree, with a good job, married, with her own child and living in a nice home. Every stereotype I had about deaf people before was now gone…..what Karen showed me was that Aubrey could have, what I perceived to be, a “normal” life. We decided that total communication was the way we wanted to go in our family. We wanted to bombard Aubrey with as much information as we could. We went to a week long institute one summer for parents with hearing impaired children. Aubrey was a little over 1 year old and we learned so much and we finally got the one thing we wanted more than anything, lots and lots of contact with other parents all over the state who also had deaf kids. We formed bonds and knew what each of us was going through, it was very comforting. When we left Jacksonville after that week we vowed to keep in touch and we did. We started a parent support group locally for the Chicagoland area. There was nothing else out there for parents to meet and share ideas, frustrations and successes. It was one of the most comforting times for our family.

Aubrey continued her therapy at Easter Seals and life settled into a routine of learning sign language and driving twice a week back and forth to Joliet for the therapy sessions. Before I knew it Aubrey was almost three years old and smart as a whip. She was talking and had met almost every developmental milestone at the appropriate ages. Some people had warned me that teaching your child sign language would inhibit their ability to try to talk and this just wasn’t so. She was babbling and talking all the time, we felt very lucky that we had caught her hearing loss so soon in her young life. Early intervention is key to a child’s success, it can make all the difference in the world!

We have been though a lot of changes and transitions in Aubrey’s 11 years of life. She went to a self-contained, hearing impaired class room from 3 years of age until the end of 2nd grade. In 3rd grade we mainstreamed her in her home school with an interpreter. When I think about all we’ve been though, learning that she was deaf, accepting her deafness and educating her to the best of our abilities, dealing with pity from others when we wanted to pound them, learning to break stereotypes, the list can go on and on. The one thing that amazes me over and over again is Aubrey herself. This child let’s nothing hold her back, she has not encountered anything she can’t handle. She talks a mile a minute and only shuts up when she is sleeping! We still go through all the speech therapy and work tirelessly to make sure the schools provide her with everything she in entitled to and deserves as a deaf child mainstreamed in her home school. The one thing that never changes is that there will always be more change, more hurdles to get over and these will be a part of her life forever. In a way that is how it is for everyone in this world, but we all learn to adapt to the best of our abilities. That is what this is all about abilities and NOT disabilities. Aubrey has taught us that no limits should be put on children, they can flourish when we least expect it!

I still have lots of worries and concerns and wonder how things will be for her when she is an adult. I know that I have been her strongest advocate for the past 11 years and my biggest goal is to make her, her own best advocate. She will be starting middle school this fall and looks to the future with excitement. She is pretty much a straight A student with a few B’s here and there and is on grade level in all subjects. She will be joining the school band as well, learning how to play the drums. I hope my ears can survive! I want parents to know that you are not alone out there. We need to share information with each other on what works and what doesn’t. We need to communicate on what is happening in our different school districts. Together we can be force to be reckoned with and be a strength to one another. Having other parents to share information with is invaluable and I hope my story encourages other parents to reach out and share their stories as well.

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