Thursday 18th – Tuesday 23rd August
We’ve started preparing for Josh coming home, even though we don’t know when it will be. A couple of nurses from the Bromley home care team came up to GOSH on Thursday to discuss his long and short term needs. We know one of them well from our weekly visits when Josh was at home. He’ll need bloods taken at least twice a week, a special bed downstairs, a part-time or live-in carer and wheelchair ramps to get in and out of the house - which Joseph will no doubt think are for him and try and drive his BMX bike up. There’s been a suggestion we all live at the BMT flat for a week first, but that’s neither here nor there (literally) and totally impractical. A far better idea is that we transfer to our local hospital instead as it will be our first port of call when anything goes wrong. Josh is an incredibly complex patient and whilst the staff there knew him well, many of them have moved on over the last 3 years. His skin is looking worse and it’s the first thing I notice when Joseph and I walk in. It doesn’t seem to bother him and, apart from the pancreatitic blip, he’s been on an even keel since returning from Italy. The boys have a fun-packed afternoon and end up dancing around madly together after Josh’s physio session - just like they did in the good old days. When I phone Claire at home in the evening, Joseph’s in tears as he’s been thinking about all the happy times he used to have with his brother. Josh lost Alex when he was five and in many ways Joseph’s had to get used to living the life of an only child too. He copes so well and we couldn’t be prouder.
I’m awake at the crack of dawn on Friday. While we were in Italy they replaced the one big curtain that covered the window by my bed with two small curtains that don’t meet in the middle. Every morning I recoil in horror from the shafts of sunlight that blast through the 8 inch gap. I feel like a modern day vampire and would be a shoo-in for Robert Pattinson on the next Twilight movie if I was 30 years younger and didn’t have a tan. There’s a seminar about food at GOSH today. I don’t attend but hand over Claire’s copious notes that cover everything from the inedible halal sausages ( burnt to a crisp on the outside, raw inside ) to the timing of the meals which can often be as little as two hours apart. Add to that the fact none of the dieticians ever see the food that’s sent up and you can understand why we never order anything for Josh anymore. He sleeps until 2pm but is lively when he’s up and we even venture out to WH Smiths in Holborn so he can spend a birthday voucher. We watch a football match in the park until a couple of groundsmen turn up to carry one of the goals away. The goalposts have shifted metaphorically so many times at GOSH that we lose interest after that and return to the ward.
The weekend passes slowly. Josh is stable on most fronts, although his skin looks even more red, angry and inflamed. He wakes up on Saturday to watch Arsenal v Liverpool live on Sky and sends me out to get him a take-away at half time. A friend of mine is working at The People’s Supermarket in the afternoon, but I don’t pick up the message until the next day and miss her – which is a shame. Josh has another long sleep after the match but wakes a couple of hours before X Factor which we watch together. It’s the third consecutive series we’ve seen here at Great Ormond Street. My, how time flies when you’re enjoying yourself...
Claire and Joseph are up on Sunday. Josh wants to go out and they all head off to the park while I search the surrounding area for a shop that sells plastic footballs. The Post Office comes up trumps and we eat Al Fresco at Coram’s Fields before enjoying a kick about on the astroturf pitches. Josh manages to bang a few shots past Joseph before sitting on the bench ( literally) with Claire and pulling off a series of saves that show his co-ordination is still there, even if his strength and mobility aren’t. We play in the shade to protect Josh’s skin and have a whale of a time. It’s nearly 6.30pm before Joseph and I leave for home, by which time Josh is exhausted and back in bed and Claire’s ready to join him. The wasps we had sprayed last week are back in their droves which suggests the job wasn’t done properly. If I had a ladder long enough I’d don my ‘Scream’ mask again and do it myself...
Monday is Alex’s birthday. He would have been 10 years old had he lived. Claire and Joseph went to his garden at Beckenham Crematorium yesterday on the way to the hospital to leave a card and flowers. I don’t visit the garden but he’s in my thoughts all day and I sit down and stare at old photos for an hour or so in the afternoon with tears trickling down my cheeks. You never recover from losing a child, you just learn how to deal with it. We miss him so much, but whilst there’s a great big void in our hearts that can never be filled, Josh and Joseph have managed to squeeze into every other available space and we’re so lucky to have them. Joseph is out with a friend exploring an RAF museum in Hendon today. He was gone by 9am and isn’t dropped back home until after 7pm, so I had the whole day to myself. With the washing and ironing all done by 10am, I do a full inventory of Josh’s drugs in the cellar. Many of them are past their sell-by-dates and will have to go back to the pharmacist, but there are enough that he’s still on to make the task worthwhile. While I’m at it, I clear out the Homecare team’s box and check our syringe and elemental feed supplies too. After that I’m up a ladder picking apples. We’ve had a bumper crop this year with more good than bad. Imperfect ones go straight in the bin, the rest will go into Claire’s mother’s saucepan and become apple sauce. The rest of the day is spent in the garden pruning, weeding and doing manly jobs like mending fences. Josh had a good night after we left and has finally started watching ‘Glee’ with Claire. I’ve seen both series now and it’s my guilty pleasure. ‘The Killing’ and ‘Torchwood’ are both up there at the moment too, but ‘Dexter’ remains the best thing on TV by some distance. Season Five is drawing to a close on FX. Don’t miss it when it comes on Channel 4...
Tuesday should have seen us spend the day at Chessington, but rain unfortunately stopped play. It’s probably just as well as I read last night that they’ve changed the height restriction on Dragon Falls, Joseph’s favourite ride, from 0.9m to 1.2m. Apparently there are no signs up outside the park to tell you this piece of news and they haven’t changed it on their maps either. Does this mean he’s been at risk riding it for the last 3 years, or are health and safety simply getting their knickers in a twist again ? Chessington have also started charging £2 for parking too, which they defend by saying 20p goes towards a wildlife fund. Joseph and I enjoy a quiet day at home instead, playing games and watching movies. He has a tennis day tomorrow from 10am -3-30pm unless it’s raining again, in which case he’ll probably be forced to listen to Cliff Richard singing or something. If he goes, it should just about give me time to take the train up to London and swap round with Claire. I’m up there until Monday afternoon when we’re all hopefully off to see ‘Batman Live’ at the 02. It promises to be a ‘visual spectacular’, which hopefully means it won’t matter if Josh can’t hear any of it. He has another good day at GOSH, waking late but staying up into the wee small hours. It’s a bad habit, but it’s so good to have him up and about that we won’t be putting a stop to it anytime soon.
