Towards treatment

I don’t read as much as I would like. There are two barriers to reading. The first is time: by the time R is settled in bed at night, I am generally too exhausted to pick up a book and all I want to do is crawl into bed and get as much sleep as possible before she wakes again. The second reason is, tired and brittle as I am, I find the themes of many books that I would otherwise enjoy upsetting or stressful and it is narrowing my options. Even Jane Austin can only stand so many re-readings (It’s the same with television – I seem to be doomed to watching only Richard Curtis movies and Miss Marple on ITV3.)

Mostly, then, I am reading children’s stories to R. Had R’s development not been disrupted by Rett, it is likely that, at nearly 10, I might well have stopped reading her a bed-time story by now. I might well have expected her to read independently and this would have been a great shame. I have tried to introduce her to good quality classic children’s literature but she is not much enthused by Mary Norton, Frances Hodgson Burnett, and the like. What R really likes is Enid Blyton. I loathe Enid Blyton. After numerous Secret 7 (just awful), and St Clare’s (worse), we have alighted on the Adventure stories, which I loved as a little girl, and which I am relieved to find are still quite readable.

During R’s recent illness, I did, finally, find time to pick up a book for myself – R lay unconscious in the hospital for several days and there was little to do but read. I grabbed a large volume that had lain unread beside my bed for months: Far from the Tree by Andrew Solomon. Frankly, the subject matter seemed unpromising. The author spent many years interviewing families with “difficult” children – e.g. children with disabilities, children with mental illness, and children who had committed serious crimes, and gives an account of their experiences.  But the book is thoughtful and wise and in the end, largely optimistic about the experience of parenting many of these children (although I would have preferred that he had refrained from describing how ageing parenting a disabled child can be quite so often).

A recurring theme in the book is whether or not parents of children with disabilities should seek a cure.  A number of the children interviewed argue that, by offering a cure or in some way ameliorating their disabilities, their parents are diminishing them.  They argue that parents should accept their children entirely as they are, including their disabilities.  The last few weeks and months have seen a number of promising developments towards treatments for Rett Syndrome. I am cautiously excited about this but according to this view, I am seeking treatments not for R but for me.  As Solomon acknowledges in his book, many of the individuals sharing this view had the most minimal disabilities – can someone with a very mild form autism really speak for someone who is very disabled by the disorder?  Certainly, some of these children had been subjected to painful and ultimately unhelpful procedures but in most cases, I suspect, the parents were motivated by love and not by disappointment.

R has been unwell for over six months. It is painful to watch. She is very unsteady on her feet and now uses a wheelchair in school, having previously never used it in class. I would give anything to find something to make her feel even a little better. I do not, however, love her less because she is unwell.  It is worth considering moreover that if R had an illness like cancer and I refused any intervention, I might even be taken to court (consider the recent case of Ashya King). No, when (safe and effective) treatment becomes available, I will seek it out.  But it will be for R, not for me. I love R exactly as she is.