I have been putting off writing this post. It isn’t going to be easy. Ever wondered why some people are deaf? Well, we did. We have been under a geneticist to try and find out why smiling flower can’t hear. I think we wanted to know if it was likely to happen again. Although, we then decided that actually that would be ok.
So, to cut a long story short, we saw the geneticist last Tuesday and having examined smiling flower’s genes it turns out she has charge syndrome (charge should have capital letters as each letter stands for a different aspect of the syndrome, but I am still getting used to it and somehow that makes it too stark.)
I am not sure how you begin to process such things. I keep thinking that she is the same as she was the day before the diagnosis. Are labels helpful? Martina doesn’t seem to think so. I wonder if labels are helpful when they give you a parameter, tell you something definite – like our daughter being definitely deaf. It can feel like you belong somewhere. Our bright, loving, curious, determined girl is doing really well. She doesn’t have many of the major physical problems associated with the syndrome and for this we are incredibly grateful. I am acutely aware that our problems could be much worse. But this latest storm has left me feeling bewildered and battered at times. I did fall apart for a few days – we both did. Its exhausting having to come to terms with all this. Even so, there is always strength to draw on. Other people’s stories are a major source of comfort.
The ‘matter of fact’ geneticist said we will find it easier to get support with our label. As long as it doesn’t close down people’s expectations of smiling flower, we’re happy with that. Some people with charge have gone on to get a degree. Others have profound learning difficulties. So it is a very ambiguous label. A label without parameters; it needn’t hold her back. Today she gave me the thumbs up for the first time, and do you know, I think she’s right. I think it’s going to be OK. Our label for smiling flower is and always will be ‘hope’.