I haven’t written Jamie’s Blog for a while – various ‘things’ have been happening, for once not really concerning Jamie so much, My mind has not really been focused on anything like writing blogs or making the world a better place. Andy has been in and out of hospital for the last few weeks. He had a tumour on his neck – luckily benign, but bad enough. It is called Warthin’s tumour – a rare tumour caused by smoking or exposure to chemicals. Now Andy works in a chemical lab and he smokes, so it is a double whammy for him. The lump suddenly started to get bigger and bigger so we knew we had to do something about it. He wasn’t well either. But now it is gone and things can get back to normal. In the meantime I tried – I needed to continue working – I can’t take time off in my job very easily. Now Andy is recovering from the operation and we can get back to our Jamie campaign!
It was really interesting on the Sunday before Andy went to hospital, because Andy’s tumour was pretty huge and Jamie must have noticed it because when we picked him up and went to get into his car, Andy rubbed his ‘lump’ and I noticed Jamie immediately rubbed his neck in the exact same place. Now, that might be coincidence, but there are many of these moments, when Jamie does something that shows his intelligence and observance and I never give him the benfit of the doubt. This time I am going to – I saw the look on his face! Andy says he was thinking – ‘why haven’t I got a lump on my neck’! I think he was thinking – ‘Andy is hurt, poor Andy’. I don’t know who is right and it doesn’t really matter. What matters is that Jamie’s development continues to mature and change and I am proud of him.
On a downside, Jamie had a really bad day on Monday 12th August. He had 3 seizures on one day – again! Not just little seizures, but massive big 4 – 5 minutes of fitting and not breathing properly. He recovered well, but was quite spaced out for a couple of days. We knew it was coming, because on Sunday he was very slow to respond to anything and he looked as if he was having great difficulty in making sense of us, or anything really. SInce my last post he has had a few seizures and the specialist epileptic nurse has decided to increase one of his drugs back up. Now this is such a dichotomy because this is the drug – it is called Keppra ( levetiracetam ) that seems to make Jamie’s anxieties and challenging behaviours worse. But he is definitely really ‘spaced out’ and not his usual self. What to do – limit the drug so his seizures are worse, and perhaps life threatening, or give him a drug that quite severely impacts on his quality of life? Sometimes I wish the decisions I have to make are not more complicated than what to have for supper. But life is never like that and you have to face the challenges thrown at you and just do the best you can.
But our Sundays continue to go well. Sunday 1st September – yesterday, we even managed to go for a little detour driving back to Jamie’s home. We had prepared well for it and even so Andy was uncertain it was the right time – just a feeling he said. But I wanted to try and so we went and had a look at the wind turbines – Jamie loves watching them. We didn’t stop the car but drove slowly past and then on past the fish shop that we used to go to a lot (Andy loves marine fish and has a beautiful tank at home). Jamie didn’t seem to mind at all and was really good, if a little anxious. My thoughts here are that we can gradually increase our time with Jamie again. We used to stay out for longer, but it got shorter and shorter for a number of reasons. Primarily because Jamie can’t cope with going to a public toilet – if it is not somewhere he is familiar with, then it is a total no-go and we have soiled pants and trousers. It is just not something we can sort out in a hurry – it is going to take a lot of thought and preparation. In the meantime, Jamie’s behaviour was so bad that we couldn’t stay out any longer – he was headbanging so hard, and crashing about in the car so much that it was just turning our precious Sundays into a nightmare. Now he seems calmer and more settled we will try for longer outings. As usual it will be a situation where everything is totally flexible.
I am proud of my son though – proud of how he copes with his difficult and confusing life, proud that he always makes the best of things and most of all proud of the person I see inside – hidden by his autism. He has a truly beautiful personality – I want the world to see it!