Sunday, September 26, 2010

What Happens When...

About a year ago I went to a cochlear implant information meeting.  The meeting is held twice a year by our cochlear implant team.  My main purpose for attending the meeting was to hear a pyschologist speak about children and their futures with cochlear implants. 

The meeting itself was rather interesting.  A slide presentation was given, explaining the basics of cochlear implants to the adult crowd.  The entire CI staff was on site to answer questions, and I even found myself wanting to stand up and shout "DO IT!" to those that were skeptical.  Being on the other side of the fence has its advantages. At the end of the meeting, there was a panel.  The panel was made up of adult CI users, some bilateral (2 CI's), bimodal (1 CI, 1 Hearing Aid), some unilateral (1 side) CI users, and parents of children with cochlear implants.  One of the children was with her mother at the meeting.

The "talk" given by the psychologist was only to a few parents, but I felt much more comfortable with it being a small group setting.  I learned a lot that night.  We all knew this pyschologist, as he had given our kids their psych evals that were required for cochlear implant candidacy. That night, I learned a lot about swiss cheese and how my chiild should really have at least one sibling (sometime I'll dedicate a separate post to this pyschologists "talk"). 

On the ride home, I wondered why we were never asked to be on the panel. Hmph.

Now,  after all this time, I get it.

What happens when your child isn't the poster child for cochlear implants?  What happens when they don't speak?  What happens when they don't do conditioned play (holding an object next to their ear and dropping it when they hear a sound)?  What happens when they don't communicate?  What happens when they *gasp* use signs only or *double gasp* are only able to sign a few words? What happens when you don't fit the cochlear implant success mold?

You aren't asked to speak on a panel.  You question EVERYTHING you have done with your child since his cochlear implant activation.  You cry.  A lot.  You sit in a cloud of confusion.  You endure countless tests and unexpected read the words moderate mental retardation on a lab sheet that you are certain your child's doctor never meant for you to see.  When those tests come back negative you do not feel relieved.  You feel numb.  Still numb.  Perhaps even more numb.  You did not carry your child in your womb. You were not at your child's birth.  You do not know what happened before or after.  You guess, question, and frustrate yourself to no answers because knowledge is power, isn't it?

You consider other communication modes.  And learn that something is better than nothing in the word of communication.  You begin to hear that there is a difference between vocalizations and verbal communication.  Despite knowing better, you want to fix it. Fix what?  Fix everything.  And you cry. A lot.

You internalize anger toward people you know with normal children and people you don't know with normal children.  You cry with sadness and a bit of jealousy when you read another blog with a post about another CI child's success.  You find yourself in yet another unique circumstance. You cry when a child your own child's age is running around in the park chatting up the place and your child says nothing, all while screaming bloody murder at you because you are trying your hardest to stand firm and teach him to enjoy the whole park, not just the swings.  You pray at night to hear the word "Mama" just once in your lifetime.  You hide tears when another child calls out to their parent. You pray that tomorrow he will wave bye-bye on cue, because you know he can. 

You grieve.  All over again.  You don't grieve the hearing loss.  You grieve the fact that the possiblity did not produce the ability. You grieve your child's ability to communicate.  You grieve not hearing his sweet voice.  You wonder if you will ever hear his sweet voice.  You cry.  A lot.  You do your best to own your feelings because no amount of kind words or ignorant bliss will make this all disappear. You give yourself permission to have bad days, because there are many. You grieve the hopes and dreams you had for him with this exciting thing called the cochlear implant.  You take it too fast, and then too slow, trying desperately to gasp for air as you run back and fort between strategies.  You move forward, not knowing where the hell you are going.  You do what you have to do, because apparently...this does happen.

1 comment:

  1. I am glad you wrote this post, Heidi. I have no words of wisdom for you...just support and good thoughts. You have made wonderful decisions for AJ with the little information you have. He can HEAR the world around him because of the decisions you have made. That is an amazing thing all by itself.


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