This morning we put on Parker's implant quickly so he could more completely enjoy his advent chocolate with the sisters before school started. Then we hurriedly prepared for school.
When is was time to put coats & shoes on, I realized he wasn't listening. And he wasn't talking. He had lost his implant somewhere.
I bribed all of the girls to get a special treat if they found it before school started. I signed to Parker "Where is your implant?"and he actually took me by the hand & led me somewhere. I was encouraged, then let down, when we didn't find anything.
So I freaked out and took him to school. I asked the teacher if she still wanted to take him, even though he was deaf. She said, "Of course. I will call you if we have any major problems".
She never called.
I spent the entire day looking for his implant. I looked in rubbish bins, toy boxes, with the Barbies, with the balls, in the dirty clothes pile. I pulled out all the cushions on the couches with no luck.
At lunch I bribed the girls again to look for it. No one found it.
Given his past history of throwing electronic things in the toilet:
1-my iPhone 3 (still haven't got a new one) in June
2-the remote control for the TV ( a few separate times, actually)
3-a battery for his implant (last week--these cost 139Euros btw, and he flushed that one)
I am not actually holding my breath.
When I was in the shower this morning, Hannah came into the bathroom, asking if I knew if Parker had something in his hand. I responded that I didn't know, and "Why?". She said he was playing in the toilet. When I got out, Abby told me there was no way she was sticking her hand in there to check things out. I told her I would. And yet, when I arrived in the other bathroom, Parker, Penelope, and Hannah were standing around the toilet. I could see there was a lot of paper and such in it. As soon as I entered, I heard another flush.
Usually I have a feeling that we will find whatever it is that is missing. Today I didn't have that feeling....and yet I continued to search. I was not totally convinced that it did go to the sewers of Paris, but I wasn't completely convinced that it didn't either.
I am doing better than expected with him deaf though.
I've filed all the papers with the insurance company (the CI cost 6000E to replace),and called his deaf school and the Dr at Necker for advice, then Cochlear, the manufacturer, to get a "loaner"one that we get for one month. If we don't find the old implant in that time frame, the insurance company is supposed to get us a new model. I asked if I could buy some new batteries to replace the 2 we recently lost (one today & one a few weeks' back in the toilet, remember?), and the woman actually told me I should wait to see if the other turns up. If it does not, we will be the proud owners of a newer and better version of a cochlear implant made by Cochlear since his current model is actually almost 3 years old.
That's sort of exciting, but means all of our accessories become obsolete.
So as the day progressed, I realized more fully how useful this machine is to us-----and our little man.
I asked the kids to get on their coats & shoes several times today. Parker just stayed & played wherever he was.
I don't dare let him walk on the side walk for fear he will run into the street and not hear me when I tell him to stop.
Mealtimes there is a lot less singing & fun. In general there is significantly less chatter and laughter in the house. When it is time to do anything or go anywhere, you actually have to find Parker, tap him on the shoulder and motion him to come with you.
I found myself signing to him in silence today. And I felt that we had much more onlookers than usual. I guess I usually speak and sign, or just speak, and people don't notice him as being that much different. But just signing, it actually drew more attention. But I have evolved to be one of those "signers"that doesn't speak if the speech is falling on deaf ears. Not sure why, since he could be reading lips, but its almost as if it's wasted energy in my mind.
He is a lot more isolated. He wanted me to read books tonight to him in bed. It was hard. I tried to sign the stories that we read a lot, with the cadence that I usually use in my voice. Each time we got half way through a book, he closed it and put it down. It's just not as fun to be deaf. It's just not nice to listen to stories when you can't actually hear anything.
And I tried to imagine how much harder it would have been these past few years without him hearing. How much more energy it would require--emotional and physical to get his attention AND TO TEACH HIM THINGS.
And yet I couldn't help but wonder if in his mind, he hears things, when he is deaf. If when we were singing anything today with gestures, if he thought of the melodies in his mind, or if it just turns off a bit when he can't hear. Because it is so obvious when he is not "connected" that he vocalizes a lot less. He becomes nearly mute.
And I wondered about the sound of silence. If there is such a thing...
I recently had two older women tell me that they developed hearing difficulties at an older age, and they both hear very unsettling noises in their heads now. That one woman actually feels her head being pulled to one side, the side with the deaf ear. The other told me she hears constant ringing. That is bothered her for a few years, but now she learns to tune it out. Sometimes she is successful, sometimes she is not.
It's unsettling, right? While at the same time, so very reassuring that we are doing the "right" thing for our son. He clearly enjoys hearing. We clearly prefer speaking to signing. I can't imagine him in a quiet world. I can't imagine myself in a quiet world. I can't wait until our new processor & accessories arrive. Until Saturday morning, Parker will be in the non-hearing world. 48 hours is 48 hours longer than I'd like for it to be.
But it's occasions like this that teach me the importance of us learning to sign to him, so that he understands when things like this happen, and that we can actually communicate with each other. If one day he chooses to be in the deaf world, we need to provide those teachings to him.
The speech therapist for the girls wanted to see Penelope with Parker this week. I think she wanted to hear his voice to see if they were perhaps mimicking a deaf, hollow voice. When she heard him speak, she was stupefied. She said his voice was utterly beautiful. And it is.
So you don't really realize he is deaf, he just seems to be wearing a lot of headgear, until he actually is deaf. Like today. And if you run into us, tomorrow as well.
We are adapting better. A few months back, I would have been banging on the doors of the hospital insisting that they give us a replacement CI in the interim. And would have been fighting back tears all day long.
And it's true that I was much more pensive today, and disheartened, and reflective of where we've been and where we are going. But I could tolerate it. And so could Parker.
I often get the question, "So can he hear AT ALL?" My answer to that question is a resounding "YES! WITH THE COCHLEAR IMPLANT. IT'S MAGIC". But the truth of the matter is that without it he is basically completely deaf. Let's call it bilaterally profoundly sensorineurally deaf.
Just to give it a name.
