"Yes, he was born with a profound hearing loss, completely deaf in both ears. Hearing aids did not help him much at all."
"Do you use sign language?"
I pondered this question for a very quick second not sure who this person was or what thrashing I was about to get because my baby had CI's or that we truly don't use sign, so to be safe I answered,
"Yes, he's learning some."
and she continued into her story. A story I haven't been able to get out of my mind all day.
She continued to explain to me that she has recently been diagnosed with Meniere's Disease and has had frequent, unexpected deafness episodes which can last for hours or DAYS at a time.
Unannounced. Unexpected. Unbeknown.
Just there, out of nowhere, with the possibility of becoming permanent. She told me how she had a "ringing sensation" in her ears throughout her school years, but thought it was "just normal". I could sense the fear in her voice as she told me about the time she didn't know her baby was crying until she "saw" her crying; how she called her husband on the phone, not hearing a word he said, to tell him she woke up and couldn't hear. She told me how no one in her family, that she knows of, has any type of hearing loss. She told me her and her husband are learning ASL, together, just in case, but how difficult it is. She told me a lot.
What she didn't say is that she was scared. But the whole conversation, I was scared for her.
I wanted to reach out and give her a HUGE hug. Many, many, many huge hugs.
She asked about Aiden's CI's and how they worked. She asked how much sign we really did. This time I was more honest and told her the only signs Aiden truly uses are banana, thank you, and cat ... and that's even at a minimum. I told her how because of his Cochlear Implants he is very ORAL and how it is our goal to have him LISTEN and SPEAK to communicate. I explained how one of our main reasons for having Aiden implanted was so he could communicate with EVERYONE in our family and be a part of our hearing world, as we too, knew no one in our families who were deaf or hard of hearing. I explained how our fears will always be there, but are definitely minimized knowing he can now HEAR and SPEAK to his cousins and friends and all of our family without sign language. I told her about other late deafened adults I had met and their positive experiences with hearing aids/CIs. I invited her to view my blog and told her about the WONDERFUL support system out there of ALL ages and ALL types of diagnoses. I gave her some resources and websites and my phone number.
I can only hope I provided her some HOPE.
My husband called when I was in line checking out and as I told him about my experience, tears welled in my eyes and I was taken back. I have thought about this sweet girl all.day.long. This couldn't help bring me back to the days of Aiden's diagnosis. I was SO SCARED. Not so much for me, but for him. It scared ME, for HIM, that his world was SILENT. I just couldn't fathom a silent world. I couldn't comprehend it was truly all he knew; yet he knew no different. I'll never forget the time sitting in bed nursing him, as I watched tv. I had to yell for one of my older children and muted the tv. Then I just stared; and it hit me hard; "this is how it is in Aiden's world everyday ... lips moving with no sound", and I lost it.
I don't fear for Aiden's, what could be, silent world near as much anymore, since I know he has the ability to turn the world off when he chooses, but I just cannot imagine how scary it must be to hear for 20plus years and then all of a sudden it's taken away. I can't imagine waking up one morning and my hearing's gone and not know when or if it's ever coming back.
Even though their stories are different, I'm so glad Aiden was chit chatty (as he ate his lunch of deli turkey meat and Gogurts) and showed her his voice and hearing abilities, as a deaf child with cochlear implants.
Near the end of our conversation she asked me if I believed in God, which I replied yes, very much, and like her, I believe that He put us at that spot for a reason. She said she had thought twice about approaching us. I'm glad she did.
S - (don't want to use your name without permission), I hope you read this. You helped me as much as I can only hope I helped you. Everyday I am thankful for the miracle of Cochlear Implants, but this particular day I was very frustrated with his yelling, his showing vocally he didn't want to go in the cart. You helped me take a step back, smile at my amazing little man, and just THANK GOD my DEAF baby can HEAR my voice (and know he hears and understands when I say NO), and I get to hear his voice protest back. I wish you the best of luck in your journey and wish you were staying around this area. If you have time in the next few days, contact me, I have some resource materials I'd like to give you ... just to have whenever you're ready. The one thing my mom has always said since the beginning of this journey is all I can do is take it step by step, day by day.
Step by step. Day by day.