Friday 8th October
Today is a sad day for Joseph and all cricketkind. Our original cricket, Crickey, hopped his last hop in the wee small hours of the morning and is now in cricket heaven - leaping from one fluffy white cloud to another presumably. I’m astonished he survived so long, to be honest, as they generally only last a week in captivity and ours have both lasted four times that. Joseph didn’t seem too upset at first. We gave him a quick, dignified burial in one of the plant pots outside the back door before getting ready for school. Then the floodgates opened. He was taking them in today for show and tell and I think that made matters worse. What upset him most is that ‘Freddie’, the second cricket we found, has lost his best friend and having had Josh out of his life for 3 months he knows just how awful that feels. I tell him that Crickey must have really loved him as he always stayed on his hand and never tried to jump off. Apart from Jiminy in Pinocchio, it’s hard to believe any cricket has ever led such a happy life, munching on fruit all day without having to worry about birds munching on him. Joseph perks up in the car but as we walk into the classroom together and the other children huddle around him to see what he’s brought in, he gets really tearful again. His teachers handle the situation very wisely, clearly explaining why he’s crying to the children that ask and engaging Joseph by asking him to point out his one remaining cricket, as it’s extremely well camouflaged against the leaves. When I ring Claire to let her know how brave Joseph’s been, I suddenly realise how upset I am for him and nearly crack up myself. What began as a miserable wet day soon turns into the Indian Summer we were promised by the weathermen, or weather people as they’re no doubt referred to these days. On the train I spend most of the journey watching fellow passengers pounce on the paper left on the seat in front of me, only to discard it within seconds as it’s only an issue of ‘Kent on Saturday’ and they’d rather stare at the floor or out of the window than read that. Leaving the train a stop early, I head for WH Smith to stock up on Deadly 60 cards for Joseph and will ask Claire to make sure he gets at least 3 cards tonight to compensate for his bad news. Josh is fast asleep when I arrive, as usual. Claire tells me he managed a few steps whilst holding the parallel bars this morning, so it’s no wonder he’s exhausted. I wake him up for his teacher who has gone to a huge effort to track down film clips of songs from all Josh’s favourite Disney movies and put them on her laptop. I daren’t tell her I’ve brought up a DVD I made that’s almost identical. Josh is just about coping with his hearing aids but it’s so hard putting them in for him as you’re terrified of hurting his ears and it’s difficult to set the volume level too. As a result, his left one in particular whistles all the time and drives him mad. At first glance, I felt the map of his hearing loss looked better than mine, but I’m not so sure now and will have to do a side-by-side comparison at home. It’s not that I’m being competitive, it’ll just help give me an idea of how bad his hearing really is, as it’s almost impossible to decipher what the words ‘ moderate to severe’ actually mean. After another snooze, I wake him again for the occupational therapist. He doesn’t want a bath after that, but I manage to entice him into the playroom to go snowboarding again. He’s so lovely at the moment, much more like his old self and a real pleasure to be around. Once he’s settled I call Claire to find out how Joseph’s coping and, being 5 years old, he’s absolutely fine now. Shame the same can’t be said about Crickey…
Saturday 9th October
So, the Chilean miners could be rescued tomorrow. I always said they’d be out before we were. We came into hospital a month before the tunnel collapsed and whilst our situations are in no way comparable, I thought we’d both be trapped until Christmas. Now they’re just hours from freedom, whereas we remain in our confined space for the foreseeable future - which is fine as we’re no longer in the deep, dark pit of despair we found ourselves in a few months ago. Josh sleeps for most of the day, but he’s exhausted and I can’t blame him. I think I even nodded off at one point although it wasn’t for long as Josh still needs the toilet a fair bit at the moment. His encephalitis would appear to have affected the part of his brain that controls his manners as he is so polite at the moment it hurts. He’s always been that way inclined, but last night he really excelled himself. It was around 3am and he was struggling to get back to sleep after a little accident because he was feeling so itchy. I rubbed cream all over him but it was still driving him mad when the nurse came in. ‘ Excuse me.’ he began,’ but can I have some Piriton please as I’m really itchy and I can’t seem to get to sleep. You don’t have to do it straight away. If you’ve got more important things to do, you can do them first.’ Bless him. I’ll tell you, that nurse came back with his Piriton within a matter of minutes, so maybe it was all a ploy after all. I managed to rouse Josh just after lunch long enough for him to catch up on a few more football matches he’d missed, but once he’d had his bath all he wanted to do was go back to sleep, which he did. I’ve spent most of the day working and getting nowhere which is pretty frustrating, but it’s a difficult brief and there’s not much time, so it makes marginally more sense than just mooching around. Joseph is coming up again with Claire tomorrow. He left a very tearful message on my Blackberry telling me how upset and sad he is because Freddie, his last remaining cricket, has died. It’s getting a little crowded in cricket heaven. When I call back, he manages to talk through the tears and fill me in on the rest of his day. Claire and I are considering getting him a proper pet but it’s a matter of what and, more importantly, when. Given our current situation the last thing we need is something else to look after. They saw some Degas today which are the size of chinchillas but are far more active in the day and like to be cuddled. Claire’s comfortable with them as their tails aren’t like rat’s tails which remind her of snakes. I’m home tomorrow and will study up on them, although I’m sorely tempted to go to Beaverworld and buy Joseph a Komodo Dragon just to freak Claire out. Better not as I’m unsure how Joseph would feel about feeding it crickets. We’ve had more than enough deaths in the family for my liking…
Sunday 10th October
Today’s date 10/10/10 is said to be the luckiest of the century. That’s certainly true if you’re a Chilean miner and we’re fans of the day too. Not the best of starts, as I nip into the kitchen on Robin ward and bump into a mum I’d rather not have met. As you know, I try not to venture out unless I can help it, mostly because Josh might be sick or need changing at any moment, but partly because you never know who you’ll bump into or how long you might be stuck there. There’s a cleaner hard at work mopping the kitchen floor and the mum keeps staring at her like she doesn’t belong there. Eventually, she turns to me and tells me, in front of the cleaner, how rude they all are. Whether she means cleaners, hospital workers in general or specifically Afro-Caribbeans, I have no idea but I suspect it’s the latter and it’s a conversation I’d rather not have at 8am on a Sunday morning. She then comes out with ‘ What would they be like if they were in here instead of us, I wonder ?’ A darned sight politer than her, I suspect. ‘Always treat others as you want to be treated yourself, is my motto in life’ she continues as if she’s just invented it, ‘ If she was in here I wouldn’t so much as lift a finger to help her.’ And so began a 10 minute monologue about how she was a veteran having spent several years in and out of GOSH and how her son appears to have poor T-cell re-constitution yadda, yadda, yadda. It’s not that much different to Josh’s case but without the Gastro problems or the encephalitis, but I daren’t say anything in case it sparks another 10 minute speech. By this time the poor cleaner has left and the moment my toast pops up I make my excuses and make a sharp exit too. Josh had another good night except for a 3 hour spell when I was up every 15 minutes with him. He then slept solidly from 6am until 11am when I tried to wake him as Joseph and Claire where on the way. I finally managed it 10 minutes before they walked through the door. Josh is still struggling with his hearing aids and I’m not surprised. They’re uncomfortable, they whistle, and when Claire announces their arrival with a loud cheery hello, they almost explode and he asks me to take them out. Joseph hoists Josh into his wheelchair again and they go snowboarding on the Nintendo together for 15 minutes before Josh has another ‘ little accident’ and I have to wheel him back to his room and hoist him back into bed to change him. He decides he’s too tired to go back and by the time I collect Joseph from the playroom he’s almost asleep again. Joseph and I walk across town to The National Geographic shop which a friend told me had a free animal show once a month and today’s the day. We see the tail end of the first show which included several lizards, a scorpion and a couple of snakes. Joseph’s hand was up like a shot when volunteers where asked for and got to fondle a lizard almost as soon as we arrived. After a 30 minute break the Animal Man, who is actually very entertaining and funny as well as informative, is back on stage and treats us to a bird eating spider, a huge millipede, a South American hedgehog, an armadillo and a skunk which Joseph gets to stroke. I was a bit worried about the terrible smell but as the skunk didn’t complain, I can only assume Claire’s been bathing Joseph more regularly than I have. As if that wasn’t enough of an animal extravaganza, Joseph and I head over to The Rainforest Café where we stuff our faces in-between the fake lighting flashes and thunder. I’m not entirely sure what I ordered as the lighting is so moody and atmospheric I could only just make out Joseph sitting opposite me, never mind read the menu. A quick stroll round the animatronic animals and the shop after we’ve paid the bill rounds off a perfect day. Well, not quite perfect as a boat apparently crashed into a bridge on the Thames and all Sevenoaks and Orpington trains coming into or leaving Charing Cross have been cancelled. Two tube journeys, a marathon walk, a mainline train and a car journey later we’re home safe and sound. When I ask Joseph what the best thing about the day was he says ‘ Seeing Joshie’ without a seconds hesitation. Claire had a long, deep sleep in the afternoon as Josh was zonked. She managed to persuade him to have a bath but he went straight back to sleep straight afterwards. Back home, I’ve compared Josh’s hearing chart with my own and it doesn’t look good. His hearing in both ears is on a par, if not slightly worse, than my worst ear. We have to just hope that his problems are brain rather than drug related and it will improve. Two deaf buggers in the family would be more than Claire could bear…
Monday 11th October
A clear blue sky greeted us this morning, but I drive Joseph to school rather than let him cycle so I’m back early enough to tackle the washing and the garden before catching up on the workfront. No idea where the day went, but when I finally come off the phone with a clear idea of what brief I need to concentrate on over the next few days, it’s gone 2pm and I have to leg it to the gym. Half an hour later I’m back home, feeling guilty about not let Joseph cycle this morning, I decide to push his bike to school so he can ride back. It seemed like a good idea at the time but after a mile my back’s telling me to stop. Ignoring it, I creak through the school gates just as the children come out. Watching Joseph speeding home along the pavement makes it all worthwhile. There’s just time for footie in the garden before Joseph pops next door for dinner. which gives me time to do a little more work. Well, it would have done if I hadn’t nodded off. Josh has been fine today, although still tired. Claire left him for hour for a stroll round Covent Garden and returned to find him lying in poo and calling out to the nurses. They’d changed him once and obviously didn’t expect him to go again for some time, but quite why nobody looked in on him when he called them is anyone’s guess. Claire was not a happy bunny. The wheels are in motion to try and get Josh into a rehabilitation centre as soon as it’s appropriate, but it could take anything up to 12 weeks for the paperwork and red tape to go though so we’ll still be lucky if we’re out before Christmas. I say out, but the chances are we’ll most likely be swapping life in one institution for another as Josh will be living there with one of us indefinitely as far as we know. It’s a step in the right direction though so we’re not complaining, although I’m starting to envy the Chilian miners again. They’re not due out until Wednesday now, but they’ll all be given iPods as a gift from Apple, £280 designer sunglasses to shield their eyes from the sun, a year’s free plonk from a winemaker and £6,000 from a local mining entrepreneur. They’ve apparently been offered lucrative advertising deals to plug anything from a beer called Kamikaze to drills and a sex-aid vitamin pill. But worst of all, Sir Bobby Charlton has promised them all a trip to Britain to watch Man United play and meet all the players after the game. Let’s hope Josh doesn’t hear about that one. I guess he’s just the wrong kind of trapped minor…
