Saturday, January 5, 2008

Random thoughts....(long)

I am full of randomness lately! Thought I'd share a few of those thoughts with y'all...
I read on one of my CI blogs today that a woman wanting a baby from China turned down a referral for a child because it was deaf. I have been thinking about that all day long. I know that most parents don't get to pick if their child will be hearing or deaf...or have anything else wrong with them, for that matter. International adoption often gives you that option. When my niece was adopted from Vietnam Doug and Lisa got a chance to see her referral and decide if they wanted her or not. She appeared perfectly healthy and was a beautiful baby and of course they wanted her. I would have :). They found out down the road that she has some sensory issues that they have had to deal with, but I firmly believe that even if they had anticipated those problems, they still would have loved her and wanted her unconditionally. They wanted to be parents and, I think, had faith that God would send them the baby that was just right for them :).
I can perhaps see not being prepared to take on the challenge of a severely mentally or physically handicapped child...especially if healthier, happier babies are available...but not wanting a child because it couldn't hear was a little bit stunning for me. I suppose that's because being deaf is the only life I've ever known, and it hasn't been a bad life by any stretch of the imagination. It's had its rough spots, to be sure...but nothing that was insurmountable. Most deafness can be dealt with...if not by hearing aids or cochlear implants (and there are very few people that truly can't benefit from one or the other), by sign language or other means of communication.
I love reading the blogs of the deaf babies...the dedication and love and commitment of their families is clearly evident. While doubtless many, many tears have been cried over their childrens' loss, I have heard it again and again: "I love them just the way they are." It doesn't mean that these parents wouldn't change things if they had the power to do so. It just means that they value their children for who they are...that they can see the child, not just the disability.
I think, as a deaf adult who has struggled with my own insecurities over my handicap, that seeing a child overlooked because of deafness is just incredibly sad. Even though I don't know all the circumstances surrounding the prospective parents' decision, and I would hesitate to judge them too harshly, it feels like to me that this child just wasn't quite good enough for them. I hope that I'm wrong...that perhaps they thought about it very carefully, considered that they didn't have resources available to help a deaf child, and hoped that they would be better taken care of in another family...but it still makes me sad.
My parents didn't have the choice when it came to "perfect children". In addition to having a deaf daughter, they had a severely mentally retarded son (and I had two more brothers, so they had their hands full!) They never had the chance to say "I want a do-over!" or "I don't want this one!"...it was what it was. And they went to bat, not just for us, but for all their kids...and I was given whatever it took to have not only a functional life, but a good one. The nearest GOOD resources for deafness were right where they are now...at Vanderbilt, an hour away...and we were there nearly every week. And I never, for one minute, felt that my deafness made me "not good enough" in their eyes, or that I had inconvenienced them somehow. They loved me for who I was...just the way I was (and wanted to strangle me, occasionally, for who I was, but that's a whole 'nother ballgame, and not one bit related to deafness ;)). I did (and occasionally still do) have insecurities over being deaf but have learned, after years and years of denial, to not only accept my deafness but be proud of it and who I am despite it.
I have been debating whether to write about my last mapping but think I'm ready to tell a bit about it. It was both bad and good. Abbie and Sam had both been dealing a bit with "problem child" CIs...in their case, they had the facial twitching resultant from the electrodes stimulating the facial nerve. Abbie first learned that the HiRes S program helped dramatically with the twitching...and passed that bit of information on to Sam, who tried it at his next map with equally dramatic results. He passed that bit of information on to me, and I promptly squashed that idea because, after all, I didn't have twitching and I stubbornly didn't think it would help. I thought about it a bit more, though, and decided that it sure wouldn't HURT anything...after all, it wasn't getting better like it was. So at my map on Dec. 3oth, I asked Susan to turn Thing 1 down to the HiRes S program to see if I liked it better, and amazingly, I do. It's still very soft, but the vibrations are much less jarring on S than they were on HiRes P or the 120 program. I had made a commitment to wear both Thing 1 and Thing 2 for just a little while every day, and HiRes S has made it much less of a chore. I am so grateful for my Internet support group...we all help each other out, and offer advice here and there, and if we can't do anything else, we can sympathize and support...it's wonderful :).
Thing 2, however, was a whole different ballgame this time. When Susan turned on the computer, I waited for the beeps but they never came. I finally took a gander at the computer monitor and electrodes 4 and 5 were highlighted in blue. I asked her what that meant and she said that they had shorted out. SAY WHAT? I then, of course, immediately commenced to freak out (I'm prone to that). She reassured me that it wasn't an immediate cause for freaking out (her reassurances fell on deaf ears *snort*) and told me that the other electrodes would pick up the slack and that things would be fine. Well...that mapping session was a bad one...we just couldn't get things to sound right. I went home that day and for the first time was unable to tell men's and women's voices apart. This week has not been a good one hearing wise...I can still hear all the environmental sounds fine, but am having a little more trouble with voices. My own sounds more like Daffy Duck than ever before. I go back on Jan. 22nd and we're going to take another shot at the mapping thing and hopefully will be able to fix some of these issues. I have talked to quite a few people who have experience with these things and have found that shorting isn't an uncommon thing, and it should have little or no effect, in the long run, on my overall hearing. It has set me back a bit...but I should have expected that this journey wouldn't be without a pitfall here and there!! It's been absolutely perfect up until now...I've been so lucky :). I have faith that everything will soon be back on track...but it took me a few days to get my good attitude back in gear!
I did have a great experience when I called my hairdresser to make a hair appointment and was able to understand him just fine. I hadn't made many phone calls to "outside" people (people outside immediate family, in other words) and was a little nervous, but it went great...I heard almost everything (and I have an appointment Tuesday at 9, which cannot come soon enough). And get this...I was driving when I called him...and our Pathfinder is SO loud it's a wonder I heard him at all! I have called my daughter a time or two and never have any trouble with her...I still can't get over what a blessing that is!! :) I need to practice calling people more...but I'm still a bit nervous (anyone wanna be my guinea pigs?) .
I'll be back to write more soon...but The Fugitive is on, and Tommy Lee Jones is looking good, so I'm off to watch that! Later....much love! :)

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