Friday 23rd July 2004
Ari called Gaëlle a stupid bitch because she didn’t want to take him to take a wee because she didn’t believe he had to go, because he went five minutes ago. So he says he’ll make a wee in Gaëlle’s office ! Ilan said I should record this. So we can have ammunition in the future.
We had KFC tonight, because everyone’s away (folks in Dullstroom and Zoë at Mamo), so Luca and I went to fetch the takeaways together at 17:00. Ari kept looking at his watch and asking how long we’d been gone. When we arrived, Luca gave him the Spiderman toy he’d got, and Ari put it straight to his mouth, he was so hungry. I said, uh Ari, just look at what that is before you put it into your mouth, and he looked, and went uh hum, ok. He really enjoyed his Double Crunch Chicken Burger ! he ate up his chips in two minutes and drank his whole coke. Then he was burping away like a machine gun ! because he swallows air a lot when he drinks, plus gas …
Last time he had KFC was a week after being home, I got him some strips, as I thought they’d be easy for him to hold, but there were so few, I ended up feeding him all the chicken from my burger, he was so hungry ! He was lying in bed, almost flat because he couldn’t stay sitting up for long, so it was a bit difficult to feed him then, I cut the meat into really small pieces and put them into his mouth for him. Not tonight ! he ate up all his chips, the incentive made him work hard to get his fingertips into his mouth, even turning his wrist around a little, and a tiny bit straighter. Luca didn’t finish his drumstick, so Ari ate it up, he was going to eat the cartilage on one side, but I asked him to keep his mouth open so that I could pull it out for him. The one on the other side he put into his mouth whole, but then he spat out the crunchy pieces, so I needn’t have worried !
Saturday 24th July
Rugby test Springboks vs. All Blacks this morning. 09:00 sharp, Ilan arrived as promised, with chocolate and ostrich biltong, as promised. Ari thoroughly enjoyed that. He had on his patch glasses, so he didn’t see two TVs. He even sang the National Anthem at the beginning, and he wanted to put his hand to his head, but had to settle for his heart. He watched the whole game, and wouldn’t take a piss break. Naturally, as Ilan was about to leave (five minutes after the game) Ari couldn’t hold it anymore … not to worry, quickly fixed up.
We put Ari in his wheelchair after lunch today, and took him for a long walk: the kids had a birthday party at the school, fifteen minutes walk away. He seemed to be enjoying the fresh air and sunshine, fiddling with his sunglasses on and off. It was quite a hard walk back up for us, all the way uphill again. He said he wanted to wee, so we said Ari kneyp like his parents say ! He did, but he started counting and counting, which is something he usually does when he’s experiencing pain, as a means to fly away, a coping mechanism. There wasn’t really much pee in the bottle after that anyway. He seemed really agitated, he carried on counting even when in his bed … so I cancelled the tilt table exercise for the afternoon. He had a good sleep, then he was in a bad mood, so I put him down on the mat and did some stretching with him. Always so much pain. Instead of counting this time, I got him to take deep breaths in and out, and that was good, it made him relax a lot. I think. Nevertheless, he carried on counting for hours, even after his supper. I reckon we shouldn’t have reduced his Rivotril medication, perhaps it did help him with the pain too. Strangely, though, it doesn’t seem to be his back that’s hurting mostly, just his knee joints and arms. That’s a good sign. I can’t really feel any knots in his back. Do you think the 10 minutes of reflexology my friend Emilie was able to give him on Thursday had so much effect ? or was it the letter to Betty Shine, the famous Medium, that I sent on Tuesday ? Or is he simply just healing himself and getting better ? that would be the most accepted reply. Well he’s still counting. And the whole afternoon, he hasn’t controlled his bladder, just went for it every hour – just before we could think to bring the bottle to him on the hour…
Luca and Zoë enjoyed their party this afternoon tremendously, especially since the jumping castle kept collapsing, that seemed to be the best part ! Zoë was keen to be driven back to my mother’s again for the night (she spent last night there too, after everyone had had tea with Ari), she said she was eager to watch the 25’000 cyclists or runners that were due to pass in front of the gate for the big 702 race tomorrow (or whatever it is). Luca didn’t want to go to Mamo, so I had to explain to him that we were just dropping Zoë off. Turns out, when we get there, he starts howling that he also wants to sleep at Mamo, so we say but you don’t have pyjamas ! so he says lets go home and get them. I disagreed, but then changed my mind, as a way to stop him crying. Good, we go. At home of course, he runs for his PJs. No no we have to have a bath Luca, you’re filthy – I was trying to stall him and make time pass so that he would eventually forget. But Mr Luca is 3 now, he doesn’t forget ! after his bath he wanted to wear his Spiderman suit again, but I had to argue about putting them into the wash. So he put on his PJs so that we could go to Mamo ! then I had to drive Violet to the bus stop – but he wanted to be driven to Mamo ! so I said, no you hug daddy and stay with him – afterwards, we’ll go. Eventually, at 18:30, there was no more denying to him that we were going. His little rabbit face promised me that he would be good, even to his sister, he said on the phone to my mum, he’ll sleep in the big bed and he won’t cause any trouble. So I drove him there ! Anyway, Ari was so busy counting that he didn’t notice the twenty minutes I was away. Took me longer to type all this !
Monday 2nd August
Ari has begun out-patient therapy at Kensington Clinic, two weeks. They are always negative, it takes Sheryl’s ideas to make Ari progress. She had them make back leg splints to strengthen his legs. We need to use the tilt table, that was so hard, but now that they are almost straight, he can almost stand up with them. Still very painful…
I had a good cry this afternoon, it all suddenly seemed too much. I realised that I need someone to look after me too. I married Ari because I felt he would be my strength and hold me tight through all of time – which he always did, he was my guide through life for the last nine years, my pillar of strength. Now the roles are reversed, I am looking after Ari, I am his strength. It is like having three children, except that the two smaller ones can look after themselves most of the time. Ari has become so demanding these last few days, he’s always calling Gaëlle-Gaëlle-Gaëlle the minute I walk away. Then it’s mommy mommy mommy. Luckily there are Ari’s parents. But they’re not here all the time , and they’re together, I don’t have anyone to lean on. Ari is like a baby, totally selfish, I mean he only thinks of himself, not that I blame him, he must be so frustrated, so bored, and alone, even when we’re there. And then in the evening I’m dead tired from all the lifting and the concentrating on understanding what Ari is trying to say, and being called to him all the time, and I have no energy or patience left, which means that I end up screaming at everyone, and then I hate myself because Ari doesn’t deserve it and the kids are just trying to have fun they are not deliberately trying to irritate me. I don’t want to leave them with a feeling that I’m an ugly person who is always shouting at them, like I used to feel about my father until I understood what stress is.
Last night we decided that Ari would sleep in my room for a change, just to see how things work out, since he seems to sleep all night anyway, and Pauline didn’t seem to be much use lately. So Sheryl told her not to come. The futon was put on the floor next to my bed. I put cushions all around it in case Ari rolled out. Ari and I watched a movie together when the kids had gone to bed, but Ari didn’t want to watch the end, so I had to switch off and take him to bed. It was easy t co take him out of the wheelchair onto the mat, I just let him fall to his knees. He doesn’t like that much because he usually falls on his nose (not hard of course). I lay next to him, and he chatted for a while, asking me tons of stuff, and wanting to have sex. Unfortunately, he still has a UTI (urinal tract infection), and I don’t really want to get it! That made me cross too, because it’s like he wants me to satisfy that urge too. Like eating or peeing, I basically have to help him out. So I put it firmly to him, no ! I don’t feel comfortable enough with him, he’s not the same Ari, I have to admit it. Only because if we were to make love, it would be something that we would both enjoy, for each other’s pleasure. No way as a demand. I know it’s just instinct and he’s not all himself. But then I said, well you’d better talk nicer to me, and he changed his tune: you look pretty tonight, I could look at you all night. There’s a little of my Ari in there. But still ! where’s the foreplay ????? At last he agreed to go to sleep, and we did get a few hours good sleep. Except when he rolled and took all the blankets with him. Then he gets too hot and pulls them all away. Then he’s freezing and I can’t make him warm fast enough. Luckily I escaped to my bed a couple of times too. Then there was a power cut, and I worried that I had to make him pee in the dark ? luckily again, there was a candle and lighter on my table ! That was great for breakfast though ! candle lit kitchen, which I prepared before the kids came down. I walked into their dark room with a candle and Zoë was a bit afraid, what’s that bright light ?? She said all the flames in the kitchen were too bright and were making her eyes pink again – so much for that ! Sheryl came in to help with dressing the kids while I gave Ari breakfast in the little armchair in my room. We managed to get ready just in time to leave for Kensington at 8am.
Wednesday 4th August 2004
Ari has been progressing tremendously now that he’s talking, his main aims in life are to gain the strength to walk again and talk clearly. This drives him to do immense efforts every day, encouraged and supported always by his family and closest friends.
He now knows about his accident in minute detail, but asks to be reminded all the time as his short term memory is still very shaky to say the least… Still, he promises everyone who visits him that he will take them fishing at all his favourite spots ! Now that he has had a chance to read some of the e-mails everyone has sent to him he is even more determined to show us all that he can make it back to the Full Ari in record time.
As always, many many thanks for all the encouragement we receive daily !!!! it has been instrumental !
Tight Lines to all Ari’s Friends and Fans !