We found out one year ago today that our baby Ben was deaf. I have felt some old feelings rising to the surface as this day approached, but today I feel happy and blessed that Ben has come so far in one year. It was one year ago that, in the midst of an ice storm, Nathan and I drove Ben to his ABR and I sat with him asleep in my arms for 2 1/2 hours without moving a muscle while the audiologist taped monitors to his head and tested his hearing. We knew that there was something wrong since Ben had failed the universal newborn screening in the hospital 6 weeks earlier, and then the one-month follow-up OAE and automated ABR, but still we figured it was probably just a mild hearing loss. After all, it seemed that he heard loud noises and we had no hearing loss in our family on either side, right? We were completely unprepared when the audiologist returned to the room and informed us that Ben had showed no response during the entire testing time - his hearing loss was profound.
Our world became confusing and felt lopsided. We told our four older children about Ben's hearing loss in an upbeat manner, while inside we felt despair. The darkest part was when I thought about how I would never be able to fully communicate with my son. We spent the next two days researching deafness in children, and came across information on cochlear implants. Unlike the negative impression I had from some media sources, I came to understand that cochlear implants could provide deaf children access to sound and that this device gave them the chance to learn to listen and speak. It was as if a light was lit in the middle of a dark tunnel. Children implanted early were given the best chance of success. We made contact with other parents through the Internet and began calling CI Centers. We visited oral deaf schools and talked with children with cochlear implants. Our every step was to try to get Ben implanted as early as possible and bilaterally. Ben was implanted bilaterally at the age of nine months and activated at ten months. It has now been three months since Ben's activation and it has been a challenging, yet amazing journey. We have tried many wearing options to keep the CIs on our stubborn boy's head. We have continued with AVT therapy twice a week, while trying to expose Ben to language around the clock.
Ben now repeats several different vowel sounds and associates the different sounds with a variety of listening toys. He localizes the source of the sound and always turns to it. It has been amazing to watch this transformation. He is beginning to understand that sound has meaning and he is vocalizing appropriate responses. At thirteen months, he walks so well and plays and delights in his family and his routine. Nathan and I could never have predicted the incredible place we would be at just one year later. There is much work ahead of us, and sometimes we feel overwhelmed, but we also feel closer as a family because of all that has happened. Ben is a wonderful boy, full of love and laughter. I wouldn't change a thing about him, even his deafness, because that would change him and he is perfect and has taught us so much this past year and changed us all for the better. If asked to describe him, his hearing loss wouldn't even be one of the first things I would mention. He is so much more - so playful and sweet and loving. We are blessed to have him in our family. This day and really this whole month has reminded me of the events of one year ago, the suspicions and doubts, and the worry and the frustrations and the fear. But now all we feel is hope and a sense of accomplishment and peace. The decisions are behind us. Ben has his CIs and we have wonderful therapists, teachers, audiologists, and a trusted team in place. We just need to move forward with faith and perseverance and much, much love. We are grateful to all the family and friends, other CI parents and professionals who have helped us along on Ben's journey to hearing so far, and to all those who will help us during this next phase of our journey. We anxiously look forward to what this next year holds for Ben and for us.
2 comments:
Your first paragraph could have been mine too, word for word. Our day was Feb 12, and it was also snowing and cold. We also suspected a mild loss, but got no responses at all on the ABR. Our world was turned upside down.
Oh, how things have changed in a year! We now have lots of hope! Glad to hear things are going so well with Ben! I look forward to following his journey through this next year!
wow, it is amazing how universal the feelings can be for any parent taking there child to a test they know the child will not pass. those months were long and difficult to bare for me also.
ben is an all-star! i talked briefly to his therapist and she is SO happy with his progress. all of our little men will catch up with their peers and become a part of a new generation of main streamed deaf children.
who would of thought this was possible 10 years ago?
HEAR is to the coming year! hip-hip-hooray!
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