Friday, 4 November 2011


In my head, I am still twenty and Tank Girl.

In reality,though, I will never have the energy to fight against Water & Power again. And my thighs lack the muscle tone to wrap round someone's head and break his neck.

We went to Ikea today. Tank Girl never went to Ikea. I'm willing to bet my life's savings on it. We bought cupboards. We had meatballs. We loaded more weight than a car should reasonably be expected to carry on to the roof and we came home. In the rain. And the traffic. And we were late picking up Nenna from nursery.

Nenna was tired and turned out to have a temperature and a chest infection. So she's on antibiotics and we are hoping it doesn't get any worse in the night. Because then we have to take her to A&E. And that will be crap. And also fuck up our house-moving plans over the next few days.

We are moving, did I say?

We have found a bungalow half a mile down the road, in the village. It also has a flat garden, so the Plummeting Risk is very nicely mitigated for Nen. She has been fitted with a protective helmet and special orthopaedic shoes to help her mobility - but we still need to watch her all the time and it is exhausting, to say the least. Like having a baby that is just walking. She still cannot stand up by herself without something or someone to pull herself up on and she falls so readily and does not put her hands out to safe herself.

However, all the test results that have been done over the last six weeks have come back clear. She does not have muscular dystrophy or anything like that - that they can test for. This leaves us in the less-awful-but-still-unnerving position of just not knowing what we are dealing with. She is not putting on any weight, although she is growing - she is taller, but there is nothing to her. She has a dietician appointment the week before Christmas and we are feeding her as much as we can. She is very on-and-off food - when she is hungry she will eat almost an adult portion and then not want anything at all for a few meals after that. She has an appointment for grommets to be fitted at the end of the month. This will also mean that when she is under general anaesthetic, an in-depth hearing test can be done, by studying the electric activity in the brain. We are not sure whether she still needs grommets - but she is seeing the ENT consultant the week before the operation is scheduled, so we can talk about things then.

I bet Tank Girl doesn't worry so much about her children and moving house and whether the cupboards will go together smoothly and whether she should have bought that drill. Or about her daughter having to wear a protective helmet to stop her hurting herself when she falls over. Or that her Tank-Girl Mother refuses to accept that there might, just might, be something that is preventing that daughter from being a 'normal' little girl.

I feel old and I feel defeated and I feel sad.

Nenna likes her hat.

For tonight, that is all.


  1. I have enjoyed reading your blog a lot, thank you for sharing your life online.

  2. She IS normal. She just had the bad luck to get ill when she was very young, and that has left her vulnerable.

    You would not be normal if you showed no concern for your children's welfare.

  3. Well yes, I agree with Blue Shed Thinking (brilliant name, btw BST). And it may well be that she will simply grow out of a lot of it. I've known very sickly or late developing babies and children to grow up absolutely like everyone else. I could give several specific examples. There are also specific cases I know where the parents were concerned and they were right to be, because tests did show something wrong, but those possibilities have been checked and ruled out, thank goodness, for Nenna.

    I hope Nenna was okay overnight and the move goes well. Do not feel as if any of her problems are your fault. All mothers have that tendency, but you would reassure your best friend - be a best friend to yourself, console yourself and be very kind. The four of you are very lucky to have each other and you are all great.

  4. What excellent advice from the commenters. I've been thinking about you for a while, waiting for you to post. Do you think acupuncture might help your wee girl?