viewed from the 2nd floor of Birmingham Childrens Hospital
Tuesday was awful. On arrival at the hospital this morning, the day was grey.. but the sun was trying to burst, or rather claw, it's way through the clouds above Steelhouse Lane Police Station opposite the hospital. It's a beautiful building.. well, looks beautiful on the outside, I wouldn't like to spend a night there.... As I came out of the lift the view above caught my eye so I took a quick snapshot.
As I write this a couple of days later, I realise the symbolic relation between the building in the photo and us, imprisoned in the hospital ward / isolation room in the hospital opposite.
Eleven days - no trial, no jury, just a sentence. Possible chance of parole if the chemo and radiotherapy works out.. Joel can't escape, not yet at least.. so his boredom and frustration escalates. The fine motor control issue is causing tension and he throws things across the room at the slightest hint of difficulty. We don't shout at him for that - we can't begin to understand how frustrating and confusing that is, to suddenly not be able to do something you've been used to for years... but with this comes the strops - the tantrums, and the punches.
The day started off ok - Louise did some of the physio exercises we need to do with Joel every day - just simple stuff like balancing on one leg for 10 seconds, then the other leg, and high fives but making him reach up so he counterbalances his legs while sat on the edge of a chair or bed... then Rebecca comes and collects Joel for the REAL physio session...
As we go to the gym, we walk the 'airport' link corridor again and Rebecca asks Joel if he thinks he's getting on an aeroplane.. Louise asks him where he'd like to fly to. We all giggled discreetly at the response.. having no idea where it came from... "Afghanistan" he said, matter of fact.
Rebecca asked if Joel wanted to be a soldier... he probably wants to be a war correspondent rather than a soldier, but he gave no feasible reason. Just "I like Afghanistan". I think we must watch too much BBC News 24.
This tires him out again, but instead of giving in and having some sleep, he fights it. He refuses to go to sleep. This is going to be bad news later.
Patrick comes in to check Joel's obs.. I'd been explaining to Joel earlier about the torch test in his eyes, and what they're checking for.. "The little black dot in your eye, that's called a pupil... and when it's really sunny or bright, it closes up so as not to let too much light in..."... blah blah, you know the rest.. Well, Patrick had his torch ready and Joel was eager to have his eyes checked again.
Come tea time, the proverbial hits the fan. Dinner is taking a very long time.. We see parents walking back and forth with plates of food, and wondering why they're getting up for it themselves rather than being 'waited on' as we expect.. (Not that we expect to be waited on, but that's the protocol - food is meant to be dished out at the trolley cart and taken to each patient in turn...
Colin comes in to us and apologises immediately. "I could tell you a white lie" he starts... "But I won't.. I've made a mistake which I'll own up to.. I gave Joel's spaghetti bolognese to someone else". That's it. Joel was looking forward to his spag bol, and nothing else is going to suffice.. nothing. Absolutely nothing.
It seems parents are getting impatient at having to wait to be served their dinner that they're taking to queuing up as soon as the food trolley appears at the top of the corridor. Then they either change their mind about what they ordered, or ask for extras so they can have a free bite to eat as well.. (I've seen one parent ask for some fish fingers then stand there chatting to the guy while she EATS them in front of him!)
We take Joel to the food trolley and tell him he can choose whatever he wants.. there's fish fingers, beans, chips, wedges, cottage pie, lasagne, veggie burger, chicken, rice, lots of things.. Joel wants none of it and is just stropping, raising his voice and being intolerable. A queue starts behind us.. it seems like we've joined the 'queue brigade' and are now holding up other people who can't wait to be served.. I start to get impatient as Joel is being very uncooperative.... "What about this lasagne? That's like Spaghetti Bolognese" I say.. Louise snaps at me.. "He doesn't like Lasagne".
This is not true. He eats it at home. I've seen him eat it. He likes it. Sometimes he says he doesn't like it. Sometimes he says he doesn't like me. Sometimes he says he hates Louise. Not everything he says is true, all of the time.
I go back to the room, it seems my input isn't helping. Louise tells Colin to put fish finger chips and beans on a plate, then we go back to the room. Joel refuses to eat it. It goes cold. The atmosphere in the room is even colder. I go and warm the food up after about 15 minutes, Joel throws another tantrum, gets out of bed, and goes and stands in the corridor blocking the way, facing the wall. We play the silent treatment, thinking he'll get bored.
I'd have played it longer had it not been for the fact that he was likely to lose his balance and fall over at any moment, or cause an accident by blocking the corridor. I go and try to reason with him, not giving in. I tell him, "Look Joel, it's ok if you want to strop, we're here all night anyway, so you can stand against the wall as long as you like.. but it isn't going to get you spaghetti bolognese so you're only wasting your own time.. but, if you want to carry on standing against the wall, let me move you round to this one so you won't cause an accident.. ", and I pick him up and move him around the corner out of harms way.
Then he sits on the floor, head facing forward leaning against the wall. I realise he's still in a precarious place if someone comes around the corner and doesn't look where they're going.
Louise goes out to get him and bring him back - this doesn't help his strop, but eventually, after about 40 minutes of shouting and concerned looks from parents and nurses alike, he starts to eat the fish finger, chips and beans.
Then he settles back to watch a film on Louise's MacBook while Louise gets in the shower. When Louise emerges, Joel proclaims "You promised me I could play angry birds when I ate my tea....". I made no such promise.. Louise however did.. and I reminded him that he was in the middle of watching a film, but if mommy agreed that, then mommy would sort it out as soon as she could. Louise loaded Angry Birds and he started to play. I made a cup of tea and sat in the armchair..
I won't go into too many details, but the pressure of the day go so much and something had to give. Louise and I had an argument, about something so trivial as the camp bed. I kissed Joel goodnight, and left, angry.
I sat in the car for nearly an hour, feeling guilty for leaving, feeling angry at Louise for flaring up, and feeling even more angry at myself for not realising this was not Louise and I arguing, but succumbing to the tension that had been building up over the 11 days, especially today with the tantrumes, and having the sense to see it, and say "Look, lets stop, take a step backward and calm down"
At least next time, I'll have something to think about and hopefully be able to stop it blowing out of all proportion.
I don't sleep well Tuesday night. I don't imagine Louise did either.
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