Wednesday, May 16, 2012

how the unexpected becomes routine

last week i had a two and a half hour conversation with a mom whose 7 month old baby was born profoundly deaf. i haven't met her in person yet, but she had posted online with questions about the implant process, among other "i have a deaf baby" questions. it's already a sharp learning curve to have your first baby; throw in something unexpected, like profound hearing loss and it can be pretty overwhelming. 

the aspect of hearing loss that i think makes it even harder is that there is no clear and correct course of action. it is a choose your own adventure sort of thing where you have to make tons of decisions along the way, each of which affect your child's development in one way or another. that's a lot of pressure when you aren't even getting 7 hours of sleep a night. 

you don't just decide who your implant surgeon is going to be. first you need to see if your child is even eligible for implants. then you have to decide if you even want to get your child implants. you have to choose the mode of communication: total communication? auditory verbal? see sign? asl? which type of school? therapists? you decide. you are suddenly the expert in a world that you probably didn't even know existed.

and you have this little baby crying in your arms as you make your arsenal of phone calls,  sleeping in the car seat as you trek to doctor's offices, or nursing as you finish a therapy session. in a sense you are learning a new language, a new way of navigating the world as you simultaneously learn how to be a parent and process the fact that your baby is deaf.

it's a lot.

but you do it, because there is no other choice. 

the first time we walked up to this booth to register for m's audiology appointment she had already "referred" (ahem, failed) multiple newborn hearing tests. she was a brand new little baby, about a month old. the first day we walked up to this booth was the day they told us she was deaf. we left in a fog, with a screaming baby who couldn't hear her own cries or our voices soothing her.

now, four years later, we come back here, to children's hospital, to get her implant settings adjusted. it's just routine, and we adore the people who work here, so it is always fun to see our friends here. some days i see a couple with a little baby leaving their appointment, looking dazed or crying, and i want to run over and hug them or tell them it will be ok no matter what. but i don't, because this is a moment when they need their space. 

i thought i'd give you a glimpse of where m goes and what she does when her implants get adjusted from an appointment we had a few months ago. 
first we head up to audiology, and m plays with all of the toys in the waiting room as we wait for her audiologist to come out and get us. inevitably there are other kids with hearing aids or implants, which i love, since the only place where m sees those on kids is at her school. i love having another place where she sees kids like her. (since she always notices the second someone has implants)

we love, love, love her audiologist sarah, who happens to be the very same person who told us she was deaf. she has been with us from the beginning, back when i was a hot mess, nursing m in her office and trying to jam hearing aids in her tiny little three month ears. hot mess, you guys. really.

she is so patient with m, and always tracks down the best toys for her to "play" with while she checks all of her settings. appointments usually take a few hours, so the more to distract, the better. m is used to long appointments since this is all she has ever known, but that doesn't mean she is always very compliant.

this day m had already driven to school (1 hour), gone to school and therapy(3 1/2 hours) and driven home (1 hour), only to head straight to this appointment. that's a lot for a three year old.
sarah switches back and forth between "live" mode, where m can hear us, and computer mode, where she adjusts the sound levels internally and m can't hear anything else but those internal sounds. people, technology is crazy. that little laptop? it has every electrode on it that is strung into m's cochlea, and each electrode has an array or width of sound information. you can see how each one is slightly different. some of m's electrodes are shut off, because they were bothering her.
here m is in computer mode. when she hears a beep she stacks one of the toys.
here sarah checks her in live mode by telling her what ingredients to put on the pizza. 
all implant kiddos know this "game" well- hold the object to your ear until you hear the sound. then when you hear it...
put it down (on the pizza, in the bowl, on the stack, etc.) m gets bored pretty quickly with this activity, but that's good in a way, because she likes more complex listening games.
(so focused)

sarah really is amazing- 
she can figure out what m is hearing (or isn't hearing) from the slightest facial expression.
and she can distract m or keep her on task hours longer than i ever could. 
(of course she has three of her own kiddos, so she has experience)
i love seeing people doing their jobs when they love them- 
and she is such a good pediatric audiologist.
we so lucked out.
plus she's fun to hang out with in real life.

two and a half hours later m has happy new implant settings & she checks out the rest of the hospital from the audiology floor. 
these days we only have to go to children's once or twice a year, 
butwhen m was teeny tiny, we were there all the time.
when she was little it held such sadness to be going there,
but it also was a reminder to me of how many other families had children with cancer or severe impairments or children whose lifespans may be very brief.
it kind of put things in perspective back in those early days.

my little trooper!
i told m we could go on a date when she was all done,
so she (wisely) picked fenton's for some ice cream!
fenton's is actually a nightmare for a kiddo with implants- it has horrible acoustics and is incredibly LOUD, but when ice cream calls, ice cream calls:
a child size sundae- i tell you the truth.

a child after my own heart-scraping out her chocolate syrup to get every last drop.
killing me with her ice cream face.
about 30 seconds after getting in the car, this girl was sound asleep.
commuting, school, an implant mapping and ice cream 
meant that she was absolutely tired out. 
almost home!
long day, good day!

when i was talking to that mom last week, 
i realized how much of an expert i'd inadvertently become in a few brief years
on this little subculture of cochlear implants and deafness.
who knew that walking up to that audiology registration desk 
would so radically change my life?


  1. this is a great post!
    i love little glimpses into their world!
    how far miss m has come, wow! :)
    i was just talking last night with friend about miss ashy and how we have gotten to see her progress too!
    technology is CRAZY!

  2. Thank you so much for speaking with this Mom. I could only give her so much and I knew you would be able to help her. We have all come so far in this little journey and I'm so, so grateful I've met you along the way.

    1. right back at you, my friend. ps your profile pic is supercute!

  3. I love this post. My friend's nephew was born with with a heart defect last week and I've been thinking about our own early days and how what used to make me curl up and cry is now relatively routine.
    I just love your daughter. Her ice cream eating skills rival my own.

    1. ha- well, shouldn't we all aspire to eat ice cream with such fervor?

      of course there are still hard days, but it is amazing to me how so much that would've reduced me to tears is now regular life.

  4. i remember meeting you for the first time...before the days of ruby...and chatting about cochlear implants and deafness and what it means for our lives. i was just a bit further down the road than you. i am happy we met through our subculture.

    1. me TOO! (i still glean your wisdom of course)

  5. How timely -- we just had a mapping session this afternoon! And I had very similar thoughts. It wasn't the same center where we had the initial diagnosis (and stood in the parking lot crying afterward) -- we haven't been back to that place, for good or ill. But it is the place where we practically lived that first year, back when Ben needed new earmolds every two weeks. I remember when he first got hearing aids, and I was trying to be so brave and keep it together, trying to jam those massive things into his tiny ears, and they were so huge, hanging down the sides of his head.... Fast forward, and just like you, we love going to see this audiologist who has been there since almost the beginning and who has been such a big part of his success. Capped off a great appointment with a restaurant meal, and it was a lovely evening!

    1. oh yes-this was so me: "trying to be so brave and keep it together"

  6. one of my favorite posts...thanks for sharing your day and your fantastic little girl.

    1. :) she's pretty great- and available for babysitting anytime.

  7. so glad sarah is part of your journey.

    1. that makes two of us! of course little does she know i'm even writing about her! heehee

  8. Replies
    1. they have some other great dr. sarah's...

  9. So perfectly true and perfectly expressed.

    "you are suddenly the expert in a world that you probably didn't even know existed."

    Your words have such awesome power, dear friend. Thank you for sharing them.

  10. I love this. It is amazing that so many of us have had similar experiences and have felt the same emotions. We switched CI clinics and so I don't have to see my diagnostic reception desk anymore. It has been an unexpected pleasure.


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