One Family’s Journey:
The Value of Connecting to Other Parents
I had no idea they could put hearing aids on babies.
As I was putting this newsletter together I was struggling to find enough articles to fill four pages. One night during my struggle, my six year old son, Ruger, was looking at scrapbooks. It is a good thing my kids like to look at my scrapbooks or I would feel that my thousands of hours of picture taking and scrapbooking were wasted.
Ruger was looking at the scrapbook of when he was born and the months following. Of course I had to look at the pictures and marvel at how fast six years have gone. Oh, the emotions that came flooding back. There were the pictures from the hospital where he referred on his first six newborn hearing screenings. Yes, the nurses just had to keep trying; they wanted him to pass as badly as we did. There were the pictures of him at two weeks old with the biliblanket under his pajamas. We learned he had jaundice the same day he referred on three or four more newborn screenings at the hospital. Here was my beautiful baby boy with ten fingers and ten toes. He looked perfect. How could they keep telling me he couldn’t pass a hearing screening?
There were the pictures of his older sister Dallie at the zoo while Ruger was at the hospital for an ABR. (Auditory Brainstem Response) testing. Ruger asked, “Why didn’t I go to the zoo?” That brought back the memories of keeping him awake for hours before the testing. How mean my mom and I felt for not letting a one-two month old go to sleep for hours and hours. After three ABR’s we got good at keeping him awake. As mean as we felt, it was better than having to sedate him.
There were a lot of ENT (Ear, Nose and Throat physician) and audiology appointments in the first two months of his life until the official diagnosis. There were innumerable amounts of tears as I came home from each appointment and tried to explain to my husband what had occurred at each appointment. It made a world of difference when he was finally able to get a day off to go to the ENT and the third and final ABR. After the final diagnosis, there were many more tears about the unknown that hearing loss and deafness represented to our family. Would Ruger play the little games Dallie did? Would he sing songs, hear the birds, and hear me say, “I love you?”
I had no idea they could put hearing aids on babies.
There was the weekend of frustration when we brought the hearing aids home and couldn’t make them stop whistling. Thank heavens the SLP came on Monday and taught us a few tricks to stop the whistling.
When one year old Ruger was in the waiting room with me at the audiologist’s office, he was making noises and playing with other kids. There was a young mom and her baby also waiting. On the verge of tears, she asked us how old he was and how long he had been wearing hearing aids. We told her he was one and he was fitted for aids at three months. She started to cry and said, “He is playing and making noises.” She was there with her two month old baby girl to get fitted for aids. I realized then that she was also facing that same unknown that we had. She had never seen a baby or toddler with hearing aids, and didn’t know what to expect for her precious little girl in one year, let alone in ten or 20 years.
When Kassidy was born and referred on her newborn screening, we knew we were headed down the same road. There were still a lot of tears, because here was this perfect little girl once again and we had to grieve for what was lost. Our travels down this road were easier because we had been there before and knew what lay ahead.
As we went through the first few months of Ruger’s life and people learned of his hearing loss, I had many friends that would tell me, “I know this lady named Deb Hovde in Robertson that has a little boy with a cochlear implant. I bet she knows what you are going through and would love to talk to you.” It took sometime until I was ready to call her. But when I did, I realized that she knew what I was going through better than any nurse, audiologist, ENT, or SLP (speech language pathologist) we had met.
As we made the decision about whether or not to proceed with a cochlear implant, the ladies from Deaf/Hard of Hearing Outreach connected us with parents of other children with implants to learn about their experiences. They were able to tell us about implants from a whole different perspective than the audiologist.
As we all know, Wyoming is very rural and there is a great distance between towns. Not everyone is as lucky as I was to have someone ten miles down the road who had a child with hearing loss. At Wyoming Families for Hands & Voices, we want to create a parent support network so strong that all parents in Wyoming feel like they have someone only ten miles away to talk to about hearing loss.
As I look at Kassidy and Ruger today, I am so pleased at how they are learning and growing just like the other kids. They love to learn, laugh, play, and get so excited about the little things in life. I watch Ruger play Clue, Kassidy play Old Maid, Ruger starting to read and Kassidy singing her ABC’s, and the songs she makes up. I spend half the day answering the questions of my two children; the two children about whom I once worried that they might not be able to communicate with me. When Ruger says, “I hear some birds,” or Kassidy says, “I hear something,” I am amazed at how far we have come, and how much we have learned in the last six years. I think about the young mom in the audiologist’s office and wonder what the last five years have brought for her and her daughter.
I recently learned that a friend from high school has a daughter who was diagnosed with profound hearing loss. After playing phone tag we were finally able to connect. Who would have thought that hearing loss would get us in touch after twelve years? We talked for a long time and could have talked much longer about hearing loss and the feelings he was experiencing. He had so many questions and I had many things I wanted to share with him.
Finding out your child has hearing loss comes with many emotions, questions and decisions. As both a mom and Co-Director for Wyoming Families for Hands & Voices, I hope that I can support and help families as they take the hearing loss journey. Hopefully, we can take every opportunity to enjoy the journey, no matter what detours we have to take. ~