Tuesday, August 14, 2012

a piece of paper

last week we went on vacation.  it was fantastic.  and hopefully in the next few days i will write a little more and post some pictures.  but today's post, is once again, dedicated to the process of helping shilo hear.

i wrote a post here about the ridiculousness that has been trying to get shilo's hearing tested and get her hearing aids.
so a couple of weeks ago, jason, shilo, and i met with an audiologist.  i called their office multiple times before hand (like a crazy mom-don't judge me, you'll understand as you read on) to make certain they understood that we weren't needing regular hearing aids, but bone conduction aids.  they understood.  they could do those.  great.  because i definitely don't want to waste my time seeing someone who can't help, and for my child to have to go even longer without being able to hear.
so anyway, we meet with the audiologist.  i didn't love her.  i didn't hate her.  she would do.  i was annoyed that she obviously hadn't looked over her file until the five minutes before she called us back to talk to us.  but, she did say she thought that it might be possible for her left ear to be aided with a normal (very high power) hearing aid.  she doesn't do bone conduction hearing aids (enter a long string of horrible words for the woman who said they could do them).  so we got an ear mold and made a follow up appointment for yesterday.
so let me explain a little further before i talk about yesterday's appointment.  first of all, shilo can hear nothing.  okay, i guess, from what they tell us, that if we were at an airport, it's possible she could hear an airplane taking off.  but as far as voices, music, toys, there is nothing.  secondly, shilo's hearing aids are covered by our states early intervention program.  her insurance would cover them as well, but by being part of early intervention, and having them done, we also have had a parent advocate, and a deaf role model on board in helping our family learn sign, and things that are important for a child who is deaf  (that i, as a hearing person, had never thought of).
so yesterday, i load abigail in the car with a promise of game time on my kindle fire during the appointment.  i am feeling emotional because there is a very real possibility that my daughter will hear for the first time.  how cool is that.
we arrive at the office and walk in.  the office manager (the one who assured my they could do bone conduction hearing aids) says, 'oh didn't you get my message?'  ummm....i was on vacation, and i checked messages upon arriving home, but no, didn't get it.  apparently there is a paper that i haven't signed yet, and then our doctor needs to sign, and then we have a ten day wait period before i can get her hearing aid.
they have her hearing aid in their office.  it's sitting there, waiting on a piece of paper in order for me to be able to get it.  i held it together as we walked out the door.
abigail started crying because she didn't understand why we were leaving (and why she wasn't playing the kindle).  shilo is puking on my shoulder.  i am standing in the parking lot losing it.  i had hoped, i had longed, and i had looked forward to my daughter hearing.  and my heart felt like it had, had all the screwing with it could take.  i considered going back in, and telling them i would just write the damn check for the thing because my kid needs to hear.  yes, it's 'just a delay.'  we will eventually get the hearing aid.  but, my daughter is nine months old.  she has significant cognitive and developmental delays, and she can't hear.  we aren't even certain that this hearing aid will work for her (and are waiting on a referral to another doctor for her bone conduction aid for the other ear).
someone implied not too long ago that the reason jason and i have taken the whole deaf thing so well is because she is adopted so we aren't as disappointed, you know, because 'she's not our own.'  let me make known that as a family who loves music and books, it is extremely sad to me that MY DAUGHTER, MY OWN CHILD, can't hear.  it's hard to know that even with aids, she likely will never have full hearing.
as i laid her and abigail down for a nap today, and sang a song to them, i started crying again.  she was supposed to be able to hear me today.  i was supposed to enjoy her learning to respond to her name, watching me as i sing, and smiling at me.  instead she looked at the wall because she had no idea that there was noise coming out of my mouth.
i am not certain how to fix our system of red tape, referrals, testing, re-testing, and stupid missing signatures. i do know that there is something extremely wrong when all that is standing between my nine month old getting her hearing aid, or not, is a piece of paper.  one that i'll sign a hundred times just to make sure she gets what she needs.


  1. Sorry to hear that. That is terrible. And, wow, what a stupid thing to say about you not being as disappointed, because she is not your own child. Of course, she is your own child. People make comments to me about how strong or positive I am about things. But what do they expect. Walking around saying woe is me and crying. Anyway, hang in there. I hope all of the paper work mess gets worked out soon.

  2. Gak! Sorry to about the visit to the office visit. That really sucks.

  3. That sucks, Andrea. So frustrating!

    I was gonna say that you handled it with a lot of grace, but then I thought: "You know, if she had cussed some people out--that woulda been okay too."

    I hope your next visit goes a lot more smoothly.

  4. That just sounds beyond frustrating! I'm so sorry your hitting all these bumps in the road (even though you did everything right and took every measure for a smooth ride).

    Your a very, very strong woman for not losing it in that office. Seriously strong. Hang in there, all will work out and Shilo will hear your voice soon. I'm keeping you all in my prayers.