Wednesday, June 15, 2011

A summary of my worst thoughts this week

(Well, with a title like that, who wouldn't want to jump right into this one?)

I've spent a lot of time over the past week thinking about, talking about, emailing about and calling people about all-things-audiology/hearing-aid related.  It's overwhelming.  And I have some mixed emotions about the whole situation. 


My dual overriding feelings are those of excitement and anxiety.  I'm anxious about the extra testing we have coming up, and the process of molding and getting the hearing aids.  About getting her acclimated to them (I can't even keep mittens on this kid . . . I imagine the first few days will be a miserable repetition of "No, Maya, leave those in, please" times 1,000,000).  But I'm secretly really excited, too . . . as we've gotten some more data, it's clear that there are some letter sounds that she is probably totally unable to hear in a normal conversation.  I can't wait for her to hear more of what is going on around her, and to start possibly picking up on (and mimicking?!) those new sounds.

Next came the sadness.  Well, chronologically the sadness came before the excitment . . . but in terms of residual emotions, the sadness has been bumped to third.  It took a day or two to get on the "Ok, hearing aids!" train . . . and then somehow in my head the hearing aids were like the walker.  They would be something to use to help her out, until she could gain the necessary skills and "catch up" (by walking on her own, or by making sounds and talking on her own).  In my mind the hearing aids would be around for 3 or 4 years, she would be talking, and they would retire to a photograph and a blog entry about how "Someday I won't remember the reality of living with with hearing aids---I'll kind of remembering cleaning them and managing the batteries and laying them carefully out when she goes to sleep, but I won't really remember."

But while chatting with Amy (my super audiologist friend) I mentioned something about the long term plan, like "So how long does a kid with data similar to Maya's use hearing aids for?"  and she said "The easiest way to think about them is kind of like glasses----if your vision needs help, you wear glasses/contacts to make it better.   For children with hearing impairment, the hearing aids make the hearing better.  She may use them through all of her adult life."



(and I sat down and put my head on my desk)




Forever?





(that was another game changing moment for me)

So I started working at mentally re-moving into Acceptance (first it was acceptance of the she-will-wear-hearing-aids reality, and now, a few days later, this she-will-wear-hearing-aids-forever reality).  At the same time, I fought the Guilt again.  

I knew that guilt was waiting for me in the recovery room, and I had my apologies to Maya ready in my back pocket the night before.  But once I knew the hearing aids were coming, it hit again, and I thought, "You can't talk.  And in some part, your inability to communicate (which must be terribly frustrating) is due to the fact that you can't hear us clearly.   You've sent signs and signals and we should have pushed to do this sooner.  I'm sorry."

Oh, and wait . . .  let me get a jump start on the ones to come . . .

I'm sorry that we have a 3 hour audiology appointment on the horizon---tests and more tests and squirting strange goo into your ears that you won't understand is going to help in a few weeks.

I'm sorry that you will have to have something in your ear all-the-live-long-day to hear us better. 

I'm sorry that you will likely have to explain your hearing aids to friends, teachers, strangers.  Or that people may stare. 

I'm sorry that you'll get used to hearing us clearly, but then when we go to the pool (which you love) we'll have to take them off and you will hear muffled, garbly conversation again.

I'm double sorry for any extra time we spent waiting and double-checking your ears before putting tubes in.  Adding the fluid that you had there for 6 months on top of your hearing loss was adding insult to injury.  You already struggled to hear, and then you were underwater on top of that. 

-sigh-

And there's one more little nagging feeling----the fear.  The fear slice was small enough that as it started to rear up with its "what if"s I managed to push it back down.   But as the days passed by fear kept surfacing and I would tear up randomly and I thought to myself, Well I think I just have to sink into this, embrace the crazy and have a good cry and come out on the other side thinking "Well, if that's the worst, at least I've already looked it in the eye".  And so, yesterday after I put Maya down for her nap I let myself unravel.

Here's the thing . . . her ears have always been weird.  Her L ear was questionable at birth, and at a month old, and then declared normal (the first time that we had an ABR done, at 2.5 months old).  Then it was questionable, then probably normal, then not-quite-sure.  The right ear has been mostly normal all along.  And now this ABR shows mild & moderate (more on the data in a few days) loss.  So, while the mom part of me thinks "How frustrating that we could never clearly decipher this until now.  It's so aggravating that our prior tests were unclear, and that the first ABR may not have been done correctly.  But at least now we know exactly where her loss is" . . . the scientific part of me thinks "The 1st ABR said both ears were normal (2008).  Many of our previous tests have indicated that the R ear was normal, the L borderline (2009-2010).  The second ABR shows mild & moderate hearing loss (2011)."


So, what if it's progressive?




What if she's losing her hearing?




What if we are getting ever-so-slightly quieter and quieter? 


(and then the flood of irrational, panicked thoughts set in, and I rode the wave)

I don't want her to lose my voice.  To have whispers slip away, and the higher notes of the adorable songs that Dave is constantly making up drop out.  What if she can't hear the birds singing on our walks anymore . . . will she think that they just stopped singing? 

Will she get angry that we're getting quieter and think that it's something we're doing on purpose?   

I have a mental flash of her in this video laughing at the dogs, and I think about how she still laughs and laughs when dogs bark at the dog park.  I wonder, if she was to totally lose her hearing, how long would she remember sounds for?  How long before she couldn't recall a barking dog, or remember the melody of a song?

How long before she wouldn't remember what I sounded like when I shrieked "Maya!  Get back here!" and chased her giggling self, or whispered "I love you, Maya" in the middle of a big hug?


So, there were some tears.



And that was yesterday's small mental breakdown.  It was dramatic and self-indulgent, but cleansing.   The most effective way for me to get rid of a nagging, scary feeling is to totally let it in, sink into the worst of it, turn it around and look at it from every angle, and then step away and see that it's not as bad in the light as it seemed in the dark.

The reality of the situation is that progressive hearing loss in young kids is highly unlikely.  (On the flip side, it's not super common to have the mysterious undiagnosed genetic stuff that we have going on . . . so "rare" isn't as calming to me now as it would have been a few years ago.)  Maya's hearing loss is mild (like I said, more on the data details later) so she can probably hear us (and birds and dogs and all that jazz) pretty well---it's just not as clear as it should be. 

Truly, I am still worried about the possibility that her hearing loss is progressive.  But even if it were, and it was progressing to the point of really not hearing at all, I would guess that our enlightened technological age probably offers many crazy solutions (higher powered hearing aids, cochlear implants, etc) that would prevent her world from going silent.  (Which I know it's not.  It's just comforting to confront the absolutely highly unlikely worst case scenario and say "I think there's probably a solution for that, so it would be ok, regardless".)

Whew.

To tie this all up, I'm actually feeling pretty good now.  Excited to get this ball rolling, nervous about how much she'll cooperate for her upcoming testing/molding appointment, and super duper excited/curious to watch her hear things differently once she gets the hearing aids (which will likely be happening the last week in July.) 

:)

8 comments:

Dollface said...

first of all- lots of hugs and prayers coming your way..

Second of all- I totally understand the mommy guilt. Mine of course (since our issues are different) stem from different things but I totally understand that feeling.

Chelsa Payne said...

Dana, this one had me in tears. When you described "whispers slipping away...", all I could think about was how real you make all of this to those of us who are in the dark on this subject matter. I'm glad to hear you're feeling more optimistic today. I'll keep sending those positive vibes and "GO MAYA" cheers your way ;-)

Nancy said...

Ah, well, I don't know if this helps but I had all that stuff done to me when I was Maya's age and I don't remember a thing! :) No trauma here... but I guess that's not really your point. But I know now maybe the gamut of emotions my mother went through... we've never really talked about it, so it's very enlightening to read your perspective.
If we run into each other at the playground and you want to show Maya my (high-powered, bluetooth-enabled, digitally-programmed) hearing aids, that is totally fine with me!

Stacy said...

I want to preface with- this is SOOOO much more insignificant that what Maya is going through, but when Brady was a baby he couldn't hear well and didn't speak at all when he was 20 months. When we went to the ENT I was positive that he could hear and the tubes were unnecessary but I agreed to them because he needed the adenoids removed due to sleep apnea. It was amazing to watch his face the next day hearing things like motorcycles, etc. I felt so guilty after when he started talking a few months later because he obviously hadn't been hearing, and I was just thinking he was a second child, a boy, the strong silent type. . . anyways, it was the best thing we ever did, and while I know that you guys have been through all that and more multiple times, if she has a major breakthrough imagine how magical that will be!!

Krystle said...

First off, I can't believe I didn't find your blog before now (a few weeks ago) thanks to your take on Holland.
We decided not to get tubes..and P's hearing test (not the ABR) was conceived to be normal, however, in the hospital she failed. Sigh. I wonder if this is why she isn't talking, but it was just checked at like 13 or 14 months. She has multiple ear infections, etc.
Mom of the year, right here.

ANYWAYS, I appreciate that you laid out all of your feelings. Sometimes, I feel stupid for getting upset over things that in the big picture are insignificant (glasses), but to me, everything she needs to help her, is a big "LOOK AT ME, I HAVE CP!" sign attached to her shirt.

You are great, you are a great writer, and a great mother.

Dana said...

Thanks for the kind words everyone :)

Nancy---thanks for the show & tell offer :) She now has a stuffed mouse that has (fake, obviously) hearing aids, and I'm starting to talk to her about them using the mouse. It would be great to show her them on another human, although I don't think she'll really understand until she gets them (at the end of July).

Anonymous said...

You are such an amazing writer. I feel your emotions as I'm reading. I cried with you while reading this one and have laughed and cheered in others. You have a gift for sure. I hope all turns out well for your family and your adorable baby girl.

Dana said...

Thank you :)