Worth the Wait and Work: A Parent Remembers
By Melanie Ribich
Do you ever have those moments where you can't believe how different your life turned out to be? I refuse to use the phrase "everything happens for a reason" because somehow it dismisses the fact that we have the ability (at least) to choose how we react to what life throws at us. When something bad happens that we as parents were not expecting, I imagine most people initially feel fear, grief and sadness. They wonder, "why me?" Or "why my child?" Have you ever had one of those moments?
When it came to our situation, I was stuck in the sadness of my son, Noah's diagnosis for a long time. Deaf, deaf, deaf, deaf. It was like a weight on my chest all day and all night that got heavier and heavier the longer I carried it. But then, mostly due to the support of my husband, I decided that grieving what Noah didn't have wasn't going to do him or us any good. I could choose to feel sorry for myself and for my child, or I could do something. The time for sadness and thoughts of "if only" were over. It was time for action.
So we sought out the experts. It took a little searching, but we found who we needed to find. Noah received some high-tech hearing aids when he was just 12 weeks old. We drove countless miles in the snow for audiology appointments. I quit my job. We adjusted every single aspect of our lives to revolve around just one of our three children.
Then we waited...
And nothing happened.
Noah didn't hear a thing for that entire first year despite the fact that we did everything you are supposed to do, to the letter. His loss was just too profound for even the best hearing aids to give him access to speech sounds.
It would have been easy to give up, I suppose. There were certainly times that I considered it. Maybe it would just be easier to sign and forget this whole hearing thing all together? Noah's therapist came to our house week in and week out and the only person who was getting any therapy was me!
We eventually made the decision to give Noah bilateral cochlear implants. And even when his cochlear implants were turned on, it was still a struggle every single day. The surgery was the easy part. We had some mapping issues, and it seemed that every day that Noah wasn't responding, listening, hearing and speaking was time lost. Tick tock. My 15-month-old child has zero words. He doesn't even babble. Tick tock.
The first six months with cochlear implants were even more stressful than the first year with hearing aids. I kept thinking,"More therapy sessions for nothing." It would be lovely to end this little story with, "Then, all of a sudden, he spoke! It was amiracle!"
Alas, it was never all of a sudden. It was a ton of work to teach Noah to listen and speak. It was baby steps for longer than I ever thought it would be. Only now do I see that those hours where it seemed Noah wasn't getting anything out of therapy sessions were most definitely not for nothing because they taught me.
In those sessions where it seemed that all we did was ring a cowbell, I was learning how to advocate for my child - how to make everything we do a language experience; how to never give up even when you want to; how to ask the hard questions; how to have faith that it will happen even though you feel like you are drowning. If I have learned anything in the past four and a half years it is this: trust your instincts and lead with your heart. Parents, it is crucial to learn as much information as possible about your child's hearing loss, but it is just as important to surround yourself with professionals who are passionate about working with a child like yours. It is important to listen to sound medical advice from the doctors you will see, but just as imperative to connect with families who are living daily life with a child who is deaf. These are the people who will help you feel like you are not alone.
Fast forward to today and Noah is a typical 4 ½-year-old boy in every respect. His progress has been remarkable. He has already completed auditory-verbal therapy, and this past spring successfully finished his first year of mainstream preschool. There are no limits on what Noah will be able to do in his life. And as I write this article, my little boy who is deaf came running in the room at top speed, looked me in the eye and said in the most perfect little voice: "I love you,Mommy."