I just received a phone call today that I have been anxiously awaiting.
The geneticist called to let us know that Liliana did not inherit either of our mutated Connexin 26 genes. She is not a carrier, and should not have a hearing loss associated with Connexin 26.
Phew.
While I am so happy for Lily, I can't help but have mixed emotions. My heart hurts a bit more for Christian. One of my biggest fears is Christian feeling left-out, different, or alone. Sure, he has a big personality to match is big brown eyes and big beautiful smile. I know I don't have much to worry about him when it comes to social skills. I just wish I could look ahead to the future to make sure that he never feels like he doesn't fit in our family.
We do everything we can to celebrate his magic ears, and we are so fortunate that our friends and family do as well. Cochlear Implants are becoming more mainstream (hopefully there will be a day when randoms don't ask me about that "THING" on my kid's head), and Christian attends school with mostly hearing children who are used to being in class with a child who wears a CI. Our friends in our neighborhood have educated their children that Christian plays with about his CI. I know that there will be times in his life where he does feel a bit different. I just am not ready to deal with that yet.
3 comments:
It is all about self esteem. If you look at his implants as something special about him, he will see it this way too. Our youngest lost her hearing from meningitis, so it is not something anyone else in the family has. But when asked, she will tell you right out that she loves being deaf and loves her implants. She can turn off her hearing any time she wants.
We have always treated her as a normal kid who has unusual hearing. We talk freely about her implants to anyone who asks, and we never treat her as a "poor baby" for not having "normal" hearing. We have also taught her to talk openly about her implants and not to be embarrased about them. That day may come, as she is not quite a teen yet, but we will see.
What I am trying to say, is that your attitude right now is what he will absorb. Be careful about giving in to mixed feelings and allowing any pity to show. It is easier to keep it from him if you don't allow it in yourself. Hard to do, but very necessary.
I remember that after I had worked through my grieving time, I came to the point where I said that I had been picked to be her mom for a reason, and that looking backwards at the way I had wanted things to be was self destructive. I needed to concentrate on providing her with the best future possible, which included keeping a positive attitude. That became a mantra whenever I felt myself looking at other kids who had better language and starting to feel sorry for myself or my daughter.
Keep giving your kids all your love and support and you will get there.
It is a relief to have the genetic tests back so you don't have to worry about Lily's hearing! It is good that you live in a community that has opportunity for contact with other kids who have CI's. So many times "differences" can be turned into a strength, and with you as a mama Christian can't help but become a confident boy!
My brother who has normal hearing and is not even a carrier for Usher Syndrome like Liliana who is not a carrier for Connexin 26, has actually felt that he was an outsider of the family as my mom was heavily involved with cochlear implant-related activities when we were growing up such as attending cochlear implant conventions, being an editor for a cochlear implant-related magazine, and being a board member of an Auditory-Verbal center. I grew up feeling and knowing that having cochlear implants is such an important part of my family's life. So, I never felt different from my family members, and I've always felt that my having cochlear implants made my life more special. Although, I do have a sister who was also born deaf and has cochlear implants too, but my parents always made sure that my siblings and I knew that we're all equally special, and that we're just unique individuals.
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