Thursday, 15 September 2011

in the dark

B took Nenna for her Paediatrician appointment on Monday.

It was inconclusive. They now think it is probably not brain damage, because her cognitive function is okay (in our own observation, they have not tested that). So the next step is bloods to test for a raft of things, including vitamin uptake. She hasn't put on any weight in the last six months, which is bizarre given how much she eats; and she has 'some facial dysmorphia'. I have just googled it and wish I hadn't as my head is now full of foetal alcohol syndrome and fragile x.

Ah internet, how doest thou guilt-trip me, let me count the ways.

Some of the blood will be frozen in case further tests need to be done at a later date.

The consultant is going to kick the grommets people up the arse as it appears that we have fallen in to some kind of ENT black hole; but apparently the balance issues are not connected with fluid in the middle ears as they are too severe. It could be related to problems with the inner ear, though; not sure what can be done about that, if anything. I suppose if ENT get their fingers out, all that will be tested when they put her under for grommets, if they still decide that is worth doing. Her hearing seems okay at the moment, though.

She still cannot walk on anything other than a completely flat surface unaided and even then she falls randomly. She in-toes very badly and her general muscle tone is very poor. She is being referred to Occupational Health for the fitting of special boots to give her ankle-support and a helmet to protect her head when she falls.

Her speech is still very garbled and unformed. There is a lot of dribbling, mouthing and tongue movement as she tries to work out how to use her mouth to make sounds. However, she is picking up signing at a rate of knots - B and I are struggling to keep up. We are going on a course run by nursery in December. All the staff at nursery are learning, too - they were anyway, but because Nenna really needs it to communicate, they are very motivated. Nursery have drawn down funding for an extra person to supervise her when she is playing with the 'big children', ie, her peers, rather than remaining in the Under-2 room with the little children. The other children understand sign as well.

Neither of us are coping all that well at the moment, but I suppose we'll get used to it all. No other option, really. The thing that is getting me is the lack of a diagnosis so far. I like to have handy boxes to put things in, to provide me with a nice framework to hang stuff on. I'd got used to the label 'brain damage' - not a great label, but one I could work with.

Now I'm label-less again and floundering around in the murky pond of denial, uncertainty, grief, mourning, resignation and all those dark feelings. To move forward and get on with things, I need to reach acceptance. I have even caught myself thinking that if she was dead, then it would be over and I wouldn't have to deal with stuff any more *.

Not knowing is very bad.

I need to be back in a place where I accept that this is how it is. That this is the hand that we have been dealt. That this is a gift to us, an opportunity for us to learn - who knows what? About ourselves, about other people, about each other. I don't know. Nenna brings me so much joy - she is truly a special person, with so much laughter and compassion and strength and curiosity about the world around her.

I cannot fuck this up for her. I need to find a way through and as of right now, I am shut in the dark.

* Yes, I am speaking to my GP about this and I have asked to be referred for counselling


  1. What can I say? Nothing really except to say that you have my utmost sympathies. And on a practical level, suggest that you concentrate on the acceptance and dealing with whatever needs to be done on a day to day basis, and leave whatever learning the situation has for you to emerge as time goes on. XXXXX

  2. we still dont have a diagnosis. and yes.. i wondered and wondered and wondered.

    we do have a description, which is at least something to say.

    acceptance comes.. and living in denial now and then is healthy.

    take care

  3. I wish there was something I could say or do to help. I am however sure that you and B will come through this - with or without a label Nenna is your daughter and there is nothing more special than that.

  4. Signing is brilliant, how frustrated Nenna would be if she couldn't communicate. You will get used to it and you will cope. A diagnosis is a label, but it's the effects that she and you need help with and it sounds as though you are getting that at last. I rather believe in blanking thought until the brain is ready to cope with it. Best wishes to all of you.

  5. You are brave to share your feelings about this. I'm thinking all good things for Nenna and the rest of you.