Writing about my mothering experience as a foreigner raising bilingual and bicultural children, dealing with the system on behalf of my special needs son and navigating Chicago and the world with my kids.
*Disclaimer: some of the pictures in this gallery are graphic and show a healing scar in detail. If you are sensitive, you may want to have someone else have a look at them first.
*Second disclaimer: This post intends to be informative in nature. I am not weighing in the pro or anti cochlear implant war. I actually think that said war is absurd. Every parent makes the best decisions for their family, so all decisions are equally good, and should be respected by others. I am just sharing our personal experience.
We have all seen some video in the news where a child, normally a toddler, received a cochlear implant and, “Ta da!”, they suddenly heard mom’s voice, or said something, or started crying in awe… You know what I am talking about. Every single time one of them makes it to the news, several well intentioned relatives or friends forward the link to those videos to me. And the truth is that… I hate those videos with all my heart. I hate them because they are not reflective of most people’s experience when they are activated. I hate them because they downplay the effort my son has made to hear and talk. I hate them because they make all the hours I have spent driving him to therapies, staying with him and reinforcing what they do there the rest of the time seem to disappear.
As wonderful as they are for the kids in them, those videos are not the norm, and they are really misleading. It takes hundreds of hours of therapy and parental reinforcement to teach a child with a CI how to hear and speak. But it all begins with the CI itself, with the surgery.
When we were faced with the decision of whether to go ahead with an implant for our son, I called on my good friend Google and looked for photos of what it would look like. The ones I found were often terrible, horrifying, including a video of the whole surgery. Had I only seen those pictures, I would have never gone ahead with the surgery. Luckily, I got in touch with several wonderful families who had gone through what we had gone through, in particular a family from England in our exact circumstances who run the best website on ANSD, the type of deafness my son has, that I have seen. A couple of local families were nice enough to talk to us, meet with us and even let me touch their kid’s heads. I know, that sounds weird, but the inner part of the cochlear implant protrudes a bit from the head, and I wanted to see how much. In case you are wondering, not much, maybe a third of an inch, in an area the size of a quarter.
Fast forward three years. When we decided to go ahead with the second implant for our son, showing him the pictures of the first one was key to prepare him for the surgery. That, and the fact that I was in a much calmer place than the first time, allowed me to take pictures of the process. I am sharing them with the hope that they can help other parents who have to make the same kind of decisions, or families and friends who want to understand better what this process entails.