Tuesday, April 6, 2010

Moments that Matter

After Aiden's Little Gym class today, I stopped by the grocery store to pick up a few things. Despite the fact that Aiden threw a HUGE FIT as I tried to get him to sit in the cart (I mean so huge that people just stared and one older gentleman even stopped to offer his assistance), I forged forward, as much as I wanted to grab him and walk out, determined to get done what I needed to get done. (I gotta say, he's one strong, determined little dude). I'm glad I stood my ground though.

As I rounded the corner into dairy I was stopped by a younger woman and our conversation started something like this:

"Can I ask you, is he deaf?"

"Yes." (sorta shocked, as people typically just stare and VERY RARELY ask questions).

"Since birth?"

"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.


Melanie said...

What a great post. I am sure that family is so thankful they met you!

Bill and Shelly said...

If she does contact you, feel free to give her our name, number, email address.
Bill has the same thing. Did you know they are doing CI's for people with this disease?

Let's try and get together soon.

leah said...

What a great encounter! Nolan's hearing loss actually mimics Meniere's Disease (he doesn't have that, but his audiogram looks like someone with early Meniere's with the reverse-slope).

We used to use more sign with Nolan than we do now- we've just fallen away from it because he never signs back. He far prefers to talk, shout, sing, or growl back at us (growling being a particular favorite at the moment).

I really hope this young woman connects into this wonderful supportive network!

tammy said...

Shelly - I didn't realize that's what Bill had. I was wondering if they offered CI's or HA's since it can be so flucuating day by day.

Leah - Some days I'm taken aback on how Aiden will just sign something randomly and I'm like ... "okay, and where did that come from?" because he gets it right, but we rarely sign anymore. Guesss their little brains just soak it up. Aiden is a grunter and has recently discovered his "screaming for fun" voice. I'm sure it goes right along with the growling voice! lol

Amy said...

Wow. what a moving story! Makes you wonder....just maybe this encounter was meant to be. Like God set this all up. And not for her benefit but for yours also :). And if it turns out that this woman is a candidate for CI's that she gets them sooner than later to ensure a more smooth transition. Her chances of successful CI use are excellent because she is prelingual.

JenandGreg said...

I love this story. Thank you for sharing it and all of your honest feelings with it. Aiden is so special. you can see that in the twinkle in his eye in every picture. He will do great things I am just for sure of it! He already is! Look what relief and comfort you and your little stud provided to this brave woman! Very cool. You are very blessed.....and we are very blessed to learn from you and Aiden. PS- you just can't look at any picture of him without smiling. I can't imagine how much he keeps you hopping!

Anonymous said...

What a beautiful post Tammy. I don't think there are such things as coincidences anymore :-) Having little people like ours has made that crystal clear. Your guy is absolutely adorable!

Herding Grasshoppers said...

Oooo, that gives me goose-bumps!

I hope she contacts you. Or someone. I'm sure you gave her more encouragement than you know.

Well done :D


Anonymous said...

IS VERY GOOD..............................

Eldee said...

Love, love, love everything that this post says and means.