The beginning of the rest of our lives, or 'a beautiful brain'.

I created this site a month or two back when we were just starting to learn more about Ivy's deafness, and have been umming and ahing for a while now about whether to go ahead with it. For now, I will - partly to record some of my own thoughts and the process, for me now and for Ivy later, but also partly to keep friends and family up to date on what's going on in our life. So much has changed already, and there are many more changes to come.

On Thursday we had the second, and, as it turns out, final lot of tests to find out more about the causes of Ivy's deafness (or deafhood, if you like). MRI, CT scan, another brainstem audiometry, and ear microscopy. Knowing more for the sake of knowing more was part of the reason for the tests, but the main reason was to determine the way forward - thinking about cochlear implants in particular. Dan and I both had a feeling that cochlear implantation would not be possible for Ivy. A statistically unjustifiable feeling, but a feeling all the same. While Ivy was under the anesthetic, it occurred to me that depending on the results, she might one day be able to hear our voices, and that felt strange, after coming to terms with the fact that she can't hear them now. Six hours after we arrived at the hospital, Ivy's ENT specialist and audiologist came to see us and showed us the MRIs. It's a pretty powerful experience, looking at your daughter's beautiful, perfect little brain on a piece of paper in front of you. The doctor pointed out the cavities on the sides of that beautiful brain where Ivy's inner ear structures should be and explained to us how very rare it was to be born without a cochlea (initial googling by Dan in the hospital room suggests that of the one in a million children born profoundly deaf, 1:100 have no cochlea. That's 1:100 000 000 for those playing at home); and how it is even rarer to be born without cochlea and with no other developmental problems, as seems to be Ivy's case, thank goodness. So there it is: no cochlea: no implants.

We chatted a bit, heads spinning, about our doctor's colleagues around the world doing (still fairly  experimental) cutting-edge mid-brain or brainstem implants, but we are certain that's not for us. The technology and research and surgery for that stuff is where cochlear implants were 30 years ago, and we don't want to risk that perfect brain for anything. Ivy is deaf, and that does not require fixing - it requires us to adjust things, learn, change, probably fight for her, but her deafness is part of her and part of our lives now.

My feelings are very mixed, a few days on from the tests, as they were at the moment we were discussing it with the doctor. I am partly very relieved - relieved that Ivy can become who she is without electrodes and magnets and external pieces, relieved that in a way, our path is clear - BSL will be her first language - and relieved that Ivy does not have to go through more hospitals, surgery, tests, adjustments, and all the clinical things that come along with the cochlear implant package.
There is also the sadness, the fear, the insecurities, the uncertainty, the feelings of inadequacy and overwhelming-ness of the challenges that lie ahead for Ivy and for all of us. But I'm not really up to writing about all of that now. I am still not able to listen to music, and I wonder if that will return for me one day.

Now we are in the business of resetting our lives, studying sign language, playing games - word games, visual games, crawling-around-the-floor games, trekking-through-the-snow games, with our beautiful, cheerful, engaging, curious, funny, determined little girl. And developing that beautiful brain of hers to its full potential in the visual world. That is our life's work now, and what an honour it is.

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