Thursday 16th September
A strange night for Josh by all accounts. He didn’t settle well and started becoming confused again around bedtime. He told Claire that he didn’t want to be a dog anymore, that Clive ( my sister’s husband ) would save him and that Joseph was dead. He also asked Claire if she’s been shot at one point, which of course she hadn’t. Having said that she should be for spring cleaning the hall and putting far too many free standing objects between the front door and the alarm. It’s currently like an obstacle course or one of those traps Macauly Culkin sets to catch burglars in ‘Home Alone’. I’m working from home for much of the day and manage to get a fair bit done. When I pick Joseph up from school he’s sporting a ‘ I’ve bumped my head sticker’ which comes with a note from his teacher and a diagram of a child’s head with the approximate place of his injury marked with a large X. There were no notes in my day when most head injuries were caused by irate teachers hurling huge wooden blackboard erasers at you. Most people would call it progress, but sometimes I’m not too sure. My trip down memory lane continues when I head off to London for an agency reunion. It’s a mad rush as I have to transport Joseph from school to his tennis class and then back to a friend’s house for a sleepover before setting off, but I still arrive in time for a quick Chinese buffet to line my stomach first. It’s a really good night and there are enough old faces there to keep the momentum going until late. The old faces don’t actually look that old. I’d hoped to walk into a room full of decrepit pensioners, but everyone looked just the same. Either we’re all conning ourselves, or the people who haven’t weathered quite so well just decided not to turn up. I’ll stick with the latter theory. Home by 11.30pm and remarkably sober, I climbed into bed and read for 15 minutes just because I could as there was no Joseph beside me for a change. Whilst I did miss him during the night, it was rather nice not to wake up at 6.30am with a smelly little foot in my face…
Friday 17th September
Had no idea it was Friday today until I bought a paper for the train journey into town. The morning hadn’t quite gone to plan and my leisurely gym visit was abandoned due to work and hanging on the telephone for over an hour waiting for HMRC to answer. Josh is just unbelievable today and has come on in leaps and bounds. His comprehension of what we say is excellent and his replies are vintage Josh, only a little slower as if played back at the wrong speed. I’ve brought up a framed certificate for outstanding courage that was awarded to him, in his absence, by his school at the end of summer term. As if to prove their point, Josh manages to read it out aloud. This is miraculous as he hasn’t been able to read anything for two and a half months. He even manages to say ‘preparatory’ which I struggle with at the best of times. Claire has to rush off as Joseph’s school have called to say he isn’t feeling well. At least it’s not another head injury. Josh is happy to stay awake and lets me read to him until his teacher comes. Just before she walks in, Josh decides he’s going to hide and covers his head with a blanket. When she walks in, he yanks it down and yells ‘Surprise !’ Thankfully she doesn’t drop her laptop in shock as that would have been the end of the lesson. Josh keeps thinking his best friend, Nicholas, is in the room with him and as the day goes on, he sees Joseph, Stephanie and a cast of thousands in here too. After quizzing him for a few minutes it dawns on me that he’s making up a game in his head, he just doesn’t realise it’s not real. There are two gangs fighting each other- Indians and Skeletons. All his friends are on his side. Once I’ve drawn this out of him, all the comments Claire’s related to me about people being shot or saved or dying begin to make sense. I point out it’s not real but join in and before long every nurse that comes into the room ends up on my side or his. After his lesson we have a short break before the occupational therapist arrives with a new hoist which I’m allowed to operate. Once Josh is in his chair, we wheel him down the corridor to the playroom where we put on a magic show using props we find in one of the cupboards. Josh smiles and tells everyone that he feels ‘ really happy now.’ There isn’t a dry eye in the room. He stays in the chair for a marathon 40 minutes before we hoist him out and back into bed. After all his exertions, he just wants to go straight to sleep but as he’s producing slivers of diarrohea every 15 minutes and screaming in pain, it doesn’t look possible. Then, almost out of the blue, it stops and he sleeps. He needs a waft of oxygen overnight and when I place the mask on the pillow, he suddenly goes ‘ Ahh, I understand now, During the day I’m a sheriff but at night. when you give me the mask, I become a zombie.’ Oh, to be inside his head just for a few minutes to get a glimpse of what he’s going through…
Saturday 18th September
Josh pretty much slept through all night without anything to help him other than the natural hormone, Melatonin. He asked for water a few times, but other than that I didn’t hear a peep out of him. Whilst he’s enjoying a lie-in, I manage to get a little work done on a couple of different projects. The TVs are back in the rooms now, precariously balanced on side cupboards and probably far more dangerous than they ever were mounted on the walls. Unfortunately there’s no internet access for some time as they’re looking to add ‘parental control’. Given they’re only on Fox ward, where the average patient is about 3 years old, I wouldn’t have thought it was a priority but they ‘ need to ensure appropriate controls are in place to ensure that children are not exposed to any inappropriate content.’ Who decides what's ‘inappropriate’ I’m not sure. Personally I’d prevent them from entering the Teletubbies web site as I think they can rots young brains and are a genuine threat to Western civilization. Eh-oh. Josh is happy and smiley when he wakes up and, wonder of wonders, has recovered his footballing brain overnight ! Not only does he remember which team he supports, but when I go through all the season’s new transfers he can tell me which clubs the players were at previously. I’ve got my footie mate back ! After sitting up in bed to watch a few of the games he’s missed on TV over the last 3 months, he decides he wants a bath. It’s a long process getting him into the sling, hoisting him into the chair, pushing him to the bathroom and finally, lowering him into the water. It’s well worth the effort though, just to hear his satisfied sigh and see his beaming smile as the warm water washes over him. He stays in far longer than he should and I end up filling bowls of hot water to pour over him to keep him nice and warm. This isn’t as easy as it sounds as mistakenly turning the taps even the slightest bit in the wrong direction switches the shower on and I end up almost as wet as he is. Getting him back into bed takes just as long, but he’s so happy he doesn’t stop grinning and is fast asleep by the time I’ve massaged him with moisturizing cream to stop him getting too scaly. With Josh asleep I have time to eat and read the paper on the bed. There’s a story about a Brit who locked himself in a room for 121 days with 40 deadly snakes in a bid to beat the world record, not realising that it only counts if you’re in a bathtub with them the whole time. Please God, don’t let Joseph’s dangerous animal obsession turn him that weird or that dumb. Josh wakes after an hour and we hoist him out of bed and into his chair again for a trip to the playroom. Most of the toys, games and books in there are for younger children so there’s not much for him to do other than enjoy a different aspect. Luckily I’d checked it out earlier and set up an X-Box for him to try out. Amazingly he manages to go several rounds of Mario Golf with me before becoming tired. He somehow managed to thrash me on the first hole too. Just like Tiger Woods, but without the extra-curricular activities. Even though I know I shouldn’t, I end up wheeling Josh back to the room and attempt to operate the hoist on my own. It’s pretty straightforward , even for me, and I have him back in bed in no next to no time. After that nothing much happens of any note. I catch up on work and watch a couple of episodes of Prison Break while Josh drifts in and out of sleep. Around 8pm he starts to become upset and asks for a hug as he’s desperate to go home but this soon passes and once again we both enjoy a relatively good night’s sleep. I say relatively because I’m still up 5-6 times when he calls for water and have to change his sheets 3 times because he’s still vomiting for a reason we can’t yet fathom.
Sunday 19th September
And so yet another week ends, or does it begin on a Sunday ? I’m never sure. We’ve seen monumental progress in Josh as far as his brain is concerned and, as he told me last night in bed, he’s ‘ Back to normal again’. He’s certainly on the way. Having feared we’d lose him for so long, then worried about how much of him we’d get back, his progress is astonishing and every day we see more and more of his personality creeping back. We have to assume that the inflammation in his brain is going down and that the virus is retreating. His skin’s looking better too, as long as he hasn’t been on the tilt table – the effects of which you can see in the photo of his legs on the left somewhere. The big marks are stretch marks caused by the steroids which he has in several places now and may fade with time but will always be there as visual reminders of what he’s been through. Given Josh’s improvement, Claire and I discussed bringing Joseph up for the change over, but he still has the snuffles so it’s best left another week. Quite how Claire and I have managed to stay well for the last 2 years or so is a mystery. I’ve no idea how we’d have coped if we’d been sick and couldn’t be here for him. Cousin Lucie was our named third carer and would have done a terrific job, but it’s difficult to ask people to put their life on hold for weeks on end which is what it would have meant. It’s gone 1.30pm before Claire arrives as she’s taken Joseph to Mass first.By that time Josh has had a bed bath, done his breathing exercises, watched a couple of football matches, been hoisted out of bed and had a little accident while playing Mari Golf. It wasn’t a head-on collision with another wheelchair or a stray golf ball striking a nurse, but a bout of diarrohea all over his sling which meant that we had to hoist him out of the chair and back into bed to change him. Messy is too small a word but Josh remained cool, calm and collected throughout and didn’t complain once as we set about cleaning him up. He did fall asleep straight afterwards though afterwards though with another satisfied sigh.Claire and I sat down and tried to synchronize our diaries for the coming weeks but it’s becoming increasingly difficult to work out a rota as we’re both becoming increasingly busy. Josh is still asleep when I leave for Bromley and pick Joseph up from his grandparents. He learnt how to ride his bike without stabilizers yesterday and is desperate to show me. We drive to the local park and he is absolutely astonishing. He’s gone from struggling to stay upright for more than 20 seconds to completing circuit after circuit without even the slightest wobble. Looks like I have two boys to be very proud of this week…
