Back to normal

Or whatever passes for normal in this house anyway. Every so often the vastness of the wrongness of the abnormality of our lives strikes me with a large sledgehammer. Every night I hook my youngest child up to a ventilator, without which she may die in her sleep. Every night it is a piece of machinery, electronic wizardry, which keeps her alive. And somehow this has become normal; so normal that when I thought I might be heading to hospital with Mog last week on holiday the only thing I thought to show my friend was how to turn the ventilator off - I completely forgot to think about how freakish the whole "child on a vent" thing would be to someone not us. The first time I saw the machinery and the mask it was all hooked up to a Resusci Anne baby doll. A fairly freakish piece of equipment in the first place. Slap a breathing mask with elephant hosing over the top and suddenly it's an alien pod baby - and this is the child I would be adopting. I'm over it now; it's a piece of kit which helps her (and occasionally marks and bruises her face), and so it's welcome in our lives. But just now and again I hook her up

and I see it all with fresh, freaked, eyes once again.

And then I turn from her and post my middle child into her armchair, to settle her for sleep. It is soul-satisfying to have a six year old who settles herself to sleep with the aid of loud opera singers. It is less satisfying and slightly more stressful to know that the drugs she takes daily now include superstrong sedatives on a nightly basis rather than just as an occasional boost. And it is somewhat scary to think too deeply about the implications of not being able to breathe properly not just when lying down but when in any position other than upright. Most of the time I'm just thankful that we have the armchair and she's able to sleep safely in it. And grateful to the OT who is sorting out a better bed and more adaptations to the bedroom all of which should help. But then every so often, like tonight, I look at her snurfling in her sleep and am reminded just how abnormal this is, how far away it is from what the average six year old can manage. I'm used to the fact she can't roll, sit up, hold her head up, talk or swallow. But these are all optional - breathing is not. It isn't normal.


On a slightly different note, remember this?

In an entirely normal state of affairs for us, tonight I discovered what happens if you leave the Christingle orange on the nice wooden box and go away for a week. I'll spare you the photo.

Who needs normal anyway?
Tia