I was just reading the posts about the CI, and I have heard it all before. as a matter of fact, I was just like the mother who wants to give her daughter all the options for her life. We also learned ASL, were involved in the Deaf community, signed with our daughter, and accepted her as being Deaf and were fine with it. We also felt that to be good parents we needed to give her every possible tool in life, including having more access to sound. we felt by letting her make that decision latyer in life, we were actually depriving her of potential sucess with the CI.
My daughter was born deaf, so she never "missed" sound (FYI). After much soul-searching and research we went through a series of tests and we got the implant for her when she was almost four.
Immediately we had problems. The morning after, I felt a deep sense of regret. she had a high fever, and looked to her parents like, "what did you do to me?" It broke my heart, but it was already done. she developed a leak of CSF fluid, and she went through two more surgeries to "fix the leak" over the next six months. then the leak stopped. For three years she was leak free, and liked her implant. She had a solid base in ASL before fer implant, and we continued to work at deveoping ASL and her spoken English, as we wanted her to be bilingual. She was considred a success. She could communicate one-on-one with frinds, and she could speak. It was nice and convenient. She was mainstreamed at school with an interpreter for help when she wanted it. All seemed well.
This past Feb she contracted bacterial meningitis, and almost died from her CI. She was in the hospital for 7 weeks, 5 in a coma. She has a severe brain injury now. She has progressed form a vegetative state to now she is walking, and running, eating and toileting herself again, but she has lost ALL her language, both spoken and signed. We have started from scratch. She still suffers severe attention and hyperactivity and seizures. She is like a baby in an eight-year-olds body. She is relearning ASL now. Her CI was removed last April, and I am so releived. To say it was the biggest mistake of my life would be an understatement.
I learned that, generally speaking, hearing people think that a person has to speak or hear to be truly successful in life. I would have denied I felt this way in the past. I didn't really know I felt that way, but I was in denial. By all the outward signs I accepted Deaf people and learned ASL and felt I was doing it all right by the Deaf community's standards. It was hard for me to imagine that Deaf people could be truly happy and successful, because I can hear. If life is so challenging when a person can hear, then it must be even more for someone who can't!
I also learned that I wanted the best of both world's for my daughter, that I would just choose both (hearing world, Deaf world) so she could choose later in life. It seems like a good philosophy, but it doesn't work, because, by getting the implant, you ARE choosing the hearing world, and therefore NOT choosing the Deaf world. Like it or not, its the truth. I still had made a choice for her.
BTW She was mainstreamed, and "sucessful" with her CI and doing well in school, but still was alone and alienated because she was not a hearing person. There were many well intentioned friends, but it still wasn't the same as when the two hearing girls were together. She was always left out.
This is my story. Its not typical, but parents should know its a possibility when they make the choice to implant. My daughter, Brooklyn, has taught me some very hard lessons. I am thankful I get a second chance to let her be deaf the awy god intended her to be.
I thought you would take it in good humor!
Thank you for sharing your story and for your honesty.
