Monday, January 24, 2011

Coming to grips with it all

As Ben's parents, we probably made peace with his deafness and all the equipment a lot sooner and more completely than anybody else -- friends, family.  As close, supportive, and involved as they have been, we're the ones who were there for the hearing tests and were told, "He's deaf.*"  We're the ones who researched the technology and the devices, sent him off to surgery, enjoyed the thrills and spills of activation and therapy and watching him reach all the milestones.  We're the ones who clean and store the equipment every night, and who maintain that constant vigilance -- did the headpiece come off?  Is something not working?  Is there too much static here?  And we're the ones who live with that sword of Damocles hanging over our heads, the specter of infection or device failure, and the need for more surgery.  Because we're immersed in that world, it long ago became our reality, our New Normal.  For everyone else, I think there's still just that tiny element of surprise and unease.

On the other hand, as his parents, we'll probably never make peace completely with it.  Every now and then, after months of New Normal, it'll suddenly hit me all over again like a lightning bolt:  I had a deaf child.  How did that happen?  My child has a very serious disability.  One of his five senses is dysfunctional, nonfunctional, and it's only with significant technological intervention that we can recover some measure of that sense.  It's okay; we're cool with it; he's doing really well.  But ... wow.  And then I realize that there was a little piece of it that I still hadn't come to grips with.  I guess it's something we'll just have to approach asymptotically.

*The clinicians don't say "deaf," of course.  They say "hearing impaired."  As in, "Your child has severe sloping to profound bilateral sensorineural hearing loss."  I just say "deaf."  I like it better.


Melanie said...

I feel the same way. I wish I was told the word DEAF when Peas was diagnosed instead of the medical lingo. It took a long time for the sting of that word to go away.

That said, I often wonder if I would appreciate my children's voices as much as I do if I didn't have a child like Noah...

rouchi said...

I agree with melanie, I think I appreciate many things more since "deafness" entered my life.But everyday I thank God, that we are doing the best we can.Yes , it still stings inside some days and some days, its a pat on the back for a good job we are doing with her.I accept HI more as it seems less stark and less dis heartening then deaf.

Amie said...

I say deaf too.We have family members who still flinch at the word tho.For us,it doesn't matter.We love her and we are proud of her.We thank god that she was born in the era of CI where a deaf child can still hear with the device.

leah said...

We're always at a loss for what to say. Nolan isn't "deaf" by the definition of the word, but hard-of-hearing becomes very cumbersome in conversation. I don't like "hearing impaired" for some reason (just a personal aversion to the term) and "I have a child with hearing loss" is just as cumbersome as "I have a child who is hard-of-hearing."

Fortunately, we don't have to explain very often. Kids ask about his hearing aids, and Nolan answers for himself now.

susannah said...

yes. this is a great post julia. (and i'm so glad you are posting more lately ;)) i remember asking- profound hearing loss? does that mean deaf? i had no idea. we use the word deaf with monrovia all the time.

but yes- she is still deaf. and always will be. at some moments that is so hard. the rest of the time it is just normal.

(btw can you email me sometime? our iep is coming up in april and i know they are going to say m is performing too well to get services. she is doing great- but she is still deaf. and still has trouble in noisy/lots of kids/people contexts. if you're willing i'd love to see some of what you used to get services. my email is susannaheloyse(at)yahoo thanks!!!!)