Even Our Misfortunes are part of Our Belongings

It hasn't been a great morning. I do everything I can to avoid saying that "s" word, because I think it is overused these days, but today there is just no way around it. (Just as a side note, Matt would assume I was going to say "shut up" and Tony would assume I was going to say "shit") "Stressful" is the only way to describe it.

My daughter Gabrielle wears hearing aids, and this morning the left one doesn't work. If you don't know her well, you would probably not notice. She goes to great lengths to hide them with her hair, and even greater lengths to hide them from me in the mornings in the hopes I will forget about them and she won't have to wear them. The first thing I do every morning after making my coffee is to test those hearing aids. Then I lay them out by my keys so that I don't forget to help her put them in. Some mornings she fools me and hides them behind my coffee maker. I'll find them there about mid-way through the morning and then have to head to the school to put them in.

Gabrielle has moderate hearing loss in her left ear and mild-to-moderate in her right. It is sensorineural loss, which means it is irreversible. It can not get better, but it might get worse.
She was not properly diagnosed until she was almost 4 years old, so the repercussions have made her life very difficult in some ways. When she was born in 1999, there was no mandatory hearing test for newborns. Ironically, 6 months later a law was passed requiring this test. If Gabrielle had been tested at birth, her short life thus far would have been made so much easier. But because hearing loss (not deafness) is difficult to diagnose, she has been though an inordinate amount of testing and false diagnosis. The result of all of this is that she has a limited vocabulary and a sometimes limited knowledge of things you would assume a 9 year old would know. A good example would be Christmas songs. If you ask her to sing "Jingle Bells", the chances are the lyrics would be all wrong. She sings it the way she heard it before she got her hearing aids. With her hearing aids, she hears much better, but not perfectly. She still misses sounds and word endings. The first time her audiologist played me a recording of how she actually heard sounds, I cried. Until you can actually hear what she hears in her "world", it is hard to understand how it affects her on a day-today basis.

Most people in their life have a few "Aha" moments, as Oprah would put it, that include memories that are forever etched in their mind. Those would usually include happy moments like a marriage or graduation, or some sort of achievement. My "Aha" moment was the minute Gabrielle's hearing specialist doctor came in after surgery to tell me that it was not the fluid in her ears that was causing the loss. We had both crossed our fingers hoping that the fluid was the issue. I can clearly remember him sitting down and saying "I'm sorry. This is not what I wanted to tell you." I can remember everything about that moment because I knew that her life was going to involve a struggle that I had no control over.

The hearing aids are now a daily part of her life and she has does a terrific job of coping with all that comes with it. She pulls out the aids the minute school is over because they magnify every sound, and it literally exhausts her. Because she doesn't wear them 24/7, she still gets names and words wrong, but she has a good sense of humor about it. Yesterday in my blog, I said that she called a guy name Camden, "Camel". When Matt pointed this out to her, they both had a good laugh. Every week when we watch American Idol, she sits by me and says after every song: "Well it sounded good to me, but how was it really?" As a mother, my heart breaks a little bit every time this happens. But I am also proud that she has learned to deal with it in such a light-hearted way.

So after attempting some "surgery" of my own on the hearing aid, and failing, I am off on a journey to get them fixed. Who knows what Gabrielle will miss today? At least I know she is happy just having to wear one. I'll bet she even throws her hair in a side ponytail during P.E.
class...

Until tomorrow, when hopefully everyone will be hearing things a little more clearly....