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For DianRez...

Posted Jun 26 2009 4:45pm

Hi. I mentioned in the comment section of another post that I would have responded to Dianrez' blogpost: Enough with blogs about CI surgery! that I almost missed. K.L.'s response to this post generated an interesting and intelligent discussion.

The aspect of DianRez' post that I wanted to highlight was this:

Far more interesting is if they revealed who they are, what they are doing, their opinions, and their life-fulfilling experiences apart from their surgeries. In the case of parents writing about children, there is an emotional aspect that makes one uncomfortable to read about...because of the expense, time, emotional investment and parental uncertainity in them and leaves one wondering if they are missing something. Even at two or three years old, children are individual personalities with varied characteristics.

People, not scars!

I waited about five days and wrote three other blogposts to present the type of revelations that Dianrez requested. I found her post interesting and when she writes, I tend to listen because her perspective is that of a person who has lived her life as a Deaf woman, but who is genuinely curious as to the experiences lived by a new generation of deaf children who have access to sound by means of the cochlear implant. Her comments are always insightful and encouraging and have helped me on a personal level many times.

I will say this: people who blog write a personal diary of their experiences. Surgery, activation, anticipation, fear and uncertainty are all part of the cochlear implant experience. Posting the surgery may be a way of confronting the most terrifying part of choosing a ci for one's child. I believe that ci activation, more than a confirmation and exuberation that "Oh my God, my child hears!" is more of an affirmation- "Thank you God, the implant works"..after suffering through the operation to give your child the opportunity to hear.

Scars are not always visible and tangible, the cochlear implant blogs reflect this reality.

There are the parents just beginning...I received a text message from the mother of a newly diagnosed deaf baby who I spoke to for about forty minutes yesterday. She called me because she was living a difficult moment and needed to talk to someone. She wrote:
One of my biggest fears is that my child will not be able to live a normal life- find a job, get married. Am I ridiculous? Some moments my head is overwhelmed by these types of thoughts and I think I'm going crazy... (I sent her the picture of Jordan with the rose in his mouth and she calmed down)

It's useless to become indignant, pissed off or outraged at this mother's comment. This is the reality, this is a typical parental reaction. And so we must inform parents. If their child is a candidate for a cochlear implant, they need resources. They need to see the surgery and the activation.


As Dianrez says...they need to see that our deaf kids are doing okay socially.

There are the parents who have reached an equilibrium...I'm getting there, so now I can tell our story through the words of Jordan.

The other night just before we went to sleep, he said, "Mom, my friend scares me."
I said, "Why?"
He replied, "Because she uses really bad language, wears too much make up and isn't nice to her parents."
I said, "She is growing. Little girls who become middle school students want to be older than they are so they start cursing and being disrespectful to their parents- obviously something you will never do...or you will be thrown out of the house."
He thought for a second..."Yeah, I guess that's true. She thinks she's older than she really is."

Jordan is immature for his age at times...then again, sometimes he is wise beyond his years.

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