Tuesday, December 11, 2007

Not so funny....

Generally, I try to be funny. Not today. Actually today is a bit of bragging.

A little background history first. My youngest daughter has quite a few health problems. For awhile it was quite scary. Weeks in the hospital. Uncontrolled glucose levels that fell into the twenties for long periods of time. A diagnosis with a life expectancy of one year. But she grew stronger. She turned three, and now almost four. Although, there have been bumps in the road. She has a problem with her left kidney, that will more than likely cause half of the kidney to be removed. Her soft palate is too short and will be surgically corrected when she is bigger. She is extremely underweight, and clinically anorexic. Meaning her body signals for her to not eat for long periods. She goes days without solid food. She has a foot drag which doctors agree is a result of brain damage during one of the periods of low glucose. Her wobbly walk we all refer to as "The Drunk Baby Walk" is a result of missing reflexes, also potentially from brain damage. On top of that, she is profoundly deaf. Sometime around a year old, she lost her hearing. Over the course of the last year and a half Emmi received one, then a second cochlear implant (uses a digital signal to produce sound).

It was a long battle to get the second implant approved. Also, we are currently suing our prior insurance company for $190,000 in unpaid medical bills, that include the first implant. The insurance companies are a nightmare. Recently, a big shot CEO of one of the insurance companies publicly stated that cochlear implants do not improve the quality of life, and therefor are unnecessary. There has been extreme backlash to this.

How dare he say that my child would be better off never hearing. Sure, we would love and accept her if that were the case. I, unlike, many others still consider her deaf. Regardless of the implant. Turn it off, and she hears nothing. Deaf. Emmi sometimes enjoys this. The quietness. Her own world. She loves to sign and watch people sign. Since she was a tiny baby, she had the most amazing control of her hands. They fluttered and moved rhythmically, unlike anyone I have ever seen. It makes sense now. She was born to learn to sign. However, she also loves music. She is a good dancer. She likes to sing. She screams, "I LOVE YOU," while I am driving, until I yell back, "HUSH, I AM DRIVING." Then she laughs hysterically. She curls up in her sister's lap and listens to her read a story. It is perhaps the closest moment they share. The time they read together. She loves to watch Landscaper's Challenge on HGTV with Kenny on Saturday mornings. She likes the sound of her own voice. Especially when it is LOUD! She can play outside now, because I can yell for her to stop when a car is coming. She can play with the neighborhood children, who know no sign. She can hear a plane overhead, and glance up. She can hear the neighbor's dog bark, and run over to pet it through the fence. Most important, she can completely be a part of our world. She is left out of nothing. She knows the sound of her mother's voice. It most definitely changed the quality of her life. She would not have been less of a person without the implant, but now she is more.

I expressed my disgust about the comment to a few people on the implant team. They asked me to put together some video clips of Emmi, and my observations of her behavior over the past year. They now would like me to speak at the conference, and present the material I will be putting together. Me! Speaking out. I am thrilled. And terrified. But mostly proud of myself. Proud that I am the type of person that is asked to speak to a group of CEOs and doctors. Proud that I am recognized as a mother who fights for her child, and for her child's dignity.

I don't think homeboy knew who he was messin' with when he ran his mouth. Look out....here I come!

6 comments:

Tiffany said...

Coming from someone who has been there from the beginning of E's life, this is amazing. This world would be nothing without mothers fighting for their children. We are their lifeline!

Abbie said...

This is very interesting that a CEO would utter those words. What insurance company is this? http://www.letthemhear.org/ is a free advocate for those that are having problems getting their insurance company to pay for cochlear implants. I have a cochlear implant and a hearing aid and my quality of life has improved tenfold.

I hope this helps you.

Paloma said...

Congratulations! What an amazing opportunity. I hope you are able to open that jerk's eyes.

Sheri said...

That is so fantastic! I would love to see you do it. E has improved sooo much. There is no doubt in my mind that you will prove him very wrong.

SGM said...

YOU are amazing. Excellent post.

Karen said...

You go, girl! :)