Wednesday, September 3, 2008

where we're at

So....We take Little M for her first cochlear implant consultation. We will be meeting with a potential doctor, who we might if we decide to get implants for Little M. We are definitely headed in that direction, and talking with this doctor today will give us the opportunity to get her opinion on whether Little M is a candidate, at what age she could get implants. The surgeon will be looking at M's CT scan from a few months back, among other things.

This doctor works with the cochlear implant team at Children's Hospital Oakland. Next week we meet with part of the team from Stanford. Basically in addition to getting feedback from these surgeons on whether Little M can get implants and when, this is an opportunity for us to see which team we feel most comfortable with and who we click with (just like picking any doctor).

As we move closer in this direction, the primary conversations we have had have been the following: one, our concern that we are not trying to make Little M "normal". A number of people we have talked to about implants (and you can also hear this sentiment in the movie Sound and Fury (below)) have mentioned that now their child is normal. (Whatever "normal" is. Someone just told me a story yesterday about how someone they knew had a deaf child and then their second child was (her words) normal. I am so sensitive to that these days...) We love her completely and believe that part of who she is is her deafness. Of course we would want her ears to be healed and for her to know the joy of sound and of not only our voices but of the sounds of the world around us (As I write this sentence I hear the sound of the neighbor's granddaughter talking, birds in the trees out front, a car passing our house, a neighbor's door closing...It is amazing how much more i hear on a conscious level now, and how I wish she could hear these same noises) The reality is that even with implants M will be deaf, that anytime they are not on (in the bath, pool, at nightsleeping, etc.) she will still be unable to hear anything. We love her as she is and don't want to fix her, and we know that we will learn from and through her as she will experience this world differently than Matt and I do as hearing people.

Our second main conversation has been the fact that we want you, our family and friends to be able to speak in meaningful ways into our daughter's life. We believe that with implants she would be able to communicate with so many more people than if she was only able to sign. We desire for her to benefit from the richness of the community that we have around us (near and far), and we are depending on you to be a part of the community hat loves her, supports her, and communicates with her as she grows up. I think it would be pretty sad for her if she had to miss out on deeper interactions with our family members and friends. At the same time, we hope that she is able to learn ASL and communicate and know other deaf people that are like her.

It is hard to make so many decisions, and weigh so many options when she is only 5 months old- from this surgery to what kind of school she should go to (yes, that is already something we have to decide. crazy, no?) to the normal stuff like how to best get her to sleep through the night. It is overwhelming. Often. And yet, she breaks through the hard parts of this because she is just pretty amazing. She continues to delight us every day. She looks so intently at everything with such a curiousity and concentration, from shadows to paintings to trees. We love to watch the 24 hour Little M Channel, as the author Anne Lammott would say.

For more information on what a cochlear implant is:

For more information on the actual surgery:

A good documentary that you can get from Netflix about some of the issues surrounding cochlear implants and Deaf culture: Sound and Fury

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