Is your soul tipsy, tired or as my favourite comedian would say… simply tickety boo?
Ash Wednesday, it seemed like a brilliant idea to give up alcohol for lent. I thought I might achieve more in the evenings, rest my liver, reassure myself that my evening celebration of ‘wine o’clock’ was harmless routine etc etc.
Day one: easy peasy – a pint glass of blackcurrant squash and an early night. I confess I felt slightly giddy with success.
Today is day two. And whilst I have stuck to my wine fast I am beginning to think that if you are the parent of a child with additional needs, alcohol is as necessary to survival as air and water…
Today I had a neurology appointment with Smiling Flower. Pete was away and as it is difficult to manage two small children and focus on a professional I dropped an extremely reluctant boy at nursery before rushing to the hospital. Of course there was no need to worry as clinic was running 45 minutes late. So I contained Smiling Flower, answering questions of several mums about her life and her language. Waiting rooms seem to bring out the inner journalist in everyone…
Finally we were seen, but of course the very important doctors were by now wondering if they were going to get a lunch break, and I was also stressed as my son needed to be collected by lunchtime. Within seconds they pronounced a new diagnosis to explain Smiling Flowers dizzy episodes. They were delighted with their decision – not epilepsy but a vestibular problem. I pointed out that she has no vestibular system so it is strange that a vestibular problem should be intermittent. They looked shocked and frantically pretended to read her entire fat stack of notes. They didn’t realise she has no semi-circular canals or balance nerve. Of course, they don’t have access to her brain MRI in the neurology clinic. We are referred to a vestibular expert… They also referred us for an ECG which they wanted done before we went home.
We raced down to the ECG department. Smiling Flower was really brave about having the stickers on her chest but broke down in sobs when the lady tried to clamp the wires on the stickers. It does look like they are about to electrocute you. So I put stickers on myself and wired myself up, grinning inanely at how fun it is to have an ECG. She was finally persuaded with the bate of pizza for lunch.
I came home, having collected my son and a pizza, and felt lost. I know that half the time we know more than they do about smiling flower and it makes me feel lost. It makes me feel like a small glass of wine to take the edge off the day; something to ease the feeling that I didn’t ask all my questions or push as hard as I could have to understand their theories.
On the upside, Smiling flower isn’t dizzy today and I felt so proud of how well she behaved at the hospital. She also communicated beautifully with her little brother this morning, trying to reassure him that school would be okay, and not to be nervous, even giving him a sheep to look after him. Maybe lent will work by adding ten minutes of positive reflection at ‘wine o’clock’ time. A friend of mine, Brian Draper, said it is more about creating space to add things in rather than taking things away. These thoughts are certainly softening my perspective… I think I will just try and find my own tiny positive each day to keep my soul tipsy in lent.