Some more changes

It's been quite a month. I'm tired. I wish it were 2016. I am writing this sitting in a plane preparing for landing in London Luton airport, my third trip to England since the beginning of February. This time I am alone! Ivy is at home with Dan for two nights while I go to a job interview tomorrow. Our first time apart, ever, but that is another story.

Our sign language retreat weekend two weeks ago was wonderful. Very intense - linguistically and emotionally, and quite a gathering of amazing people. I managed to only be a little bit envious of how much better everyone else was and remind myself that I've only been learning for about seven weeks. We met some other families with a lot in common with us, in various ways, and I learnt about multi-channel signs, practiced grammatical structures, and read story books with props and signs. I also had real dinner table conversations with deaf people, signing and muddling through while these fellow diners were so helpful and generous. Ivy had a blast - so many people signing with her, playing with her, and just generally adoring her.  What's not to like? A significant bonus to the weekend was having dear friends Nikki and James staying in the pub next door to the retreat venue, so we could have dinner with them and catch up on a road trip back to Birmingham on the Sunday afternoon.

A couple of weeks ago we also heard from Ivy's audiologist about a changed circumstance in her diagnosis. He had consulted further, sought second and third and fourth opinions from neuro-radiologists and colleagues at The malformation in Ivy's right inner ear is known as Mondini dysplasia, and she has a small partially formed cochlea. There is enough of a turn in the cochlea to make it possible to implant some electrodes in there, which means if all goes well, she will be able to hear something with a cochlear implant. Exciting news, that means an operation is on the cards after all. We are not fooled or confounded by the surgeon's claim that if the operation is successful, Ivy will 'not need to be part of the deaf community'. This is rubbish that makes my blood boil, but I am good at smiling, nodding, and not challenging the authority of the man who holds the scalpel. As the magnificent uncle Josh said to me the other day, "I'm going to keep signing until Ivy says 'Josh, you really need to stop signing now.'" Did I mention how much I love my brother? Whether or not she can speak, sign, lip read, or dance to a thumping beat, Ivy is deaf and will always be deaf, and she is already a member, albeit remote at the moment, of the deaf community. After reading Andrew Solomon's Far From The Tree when I was pregnant (although I must admit I haven't yet gotten through all of it, the chapters on schizophrenia and autism were too much for me and I put it down for a long break), the only thing I knew when I suspected Ivy might be deaf was that we, as a family, would embrace the deaf community and I would do everything in my power to help Ivy to be embraced by the deaf community, too. We have chosen to give Ivy a cochlear implant because it broadens her experience, gives her options and opportunities, and may open up another way of communicating, if she is so inclined. We will not know for a while what Ivy's preferred way(s) of communicating will be. And it may change throughout her life. Multiple times. At the moment it is smiles, faces, signs, gestures, and vocalisations, including laughing and crying. And it is my job as a mother to be able to communicate with her in the way she chooses, feels most comfortable, and can express herself most freely. If you are interested in the extremely complex emotional minefield of parenting a deaf child, implanted or not, hearing or deaf parents, oral or sign, mainstream or specialist, and the many other false or true dichotomies that exist in this minefield, Andrew Solomon's chapter is truly brilliant. Write to me and tell me what you think when you've read it. I can't even begin to write about it here. There is just so much.

I am nervous about the operation, I am worried about helping Ivy to learn to hear, about imposing on her a sensation that she doesn't know and will be a massive adjustment for her. I am worried about speech and language therapy, and I am worried about the battles we will fight to convince service providers and educators that although she has an implant, that does not by any stretch of the imagination make her hearing. I am disheartened that it begins with the surgeon and will continue for the rest of her life. But I am working on learning and becoming an advocate and speaking up and teaching others, and that will be my job. My other job will be to teach Ivy to know herself and her needs, trust herself, and advocate for herself. Just like any other little girl, but with a little more at stake perhaps. My beloved Oma died on Wednesday, at age 93. Those of you reading this who knew Oma know that she was a beautiful, funny, inspirational woman who loved very much. She passed on her strength to my mum, who passed it on to me, and it is my hope that I can instil that combination of strength, generosity and love in Ivy. Somehow through the fog of surgeries, language learning, immigration, career change, family illness, and death that has clouded life lately, I hope that is happening along the way.