30th June 2004
I was just thinking about Neil, it has been four months, and every now and then, I think I am safely away from the rocks, on a good course, and then, I plunge again into the depths. Four months is so long, and so little too. Why can I not let go ? Will it help when Ari is aware of everything at last ? But when will that ever be ?
Ari’s progress report at home
16 June Wednesday = Ari rolls himself on the mattress on his back, from side to side with legs bent more consistent with yes/no nodding. On tummy can stretch out right leg himself. Will also sometimes say “uh-uh” for no.
17 June = Sheryl helps feed him with fork in hand, also if piece of food is placed in between thumb and finger, will eat it out of his hand himself. Still needs help to lift arm/elbow to mouth, will move head with both hands closed tight. Sitting balanced on edge of bed with hands holding silver bars (lowered) much better. (Still fall on left)
1st July 2004
Sheryl has the most imagination of all, to make Ari do things, she’s the best. She bought Ari a penny whistle type of flute 2 weeks ago. And Ari takes great pleasure in blowing it softly, taking it to his lips and showing off. We give it to him on the tilt table (which Leonard had Charles van Zyl make specially) so that he can scream alarm. The peg in Ari’s stomach we used to feed him with was removed a week ago by Dr Steven Levy, a quiet GP, funny, who visits every week. He just pulled it out! We have been giving Ari his medication crushed in custard since day one. Except the Quinine (horrid taste) that Leonard stopped. So soon we’ll be able to give him a different catheter, because the big bag is so uncomfortable, and the surgeon at Kensington Clinic wouldn’t put in the supra-pubic because he already had a stomach peg in. Ari’s sister Gina and her husband Manny supply adult nappies and other baby perishables from their Baby-Boom shop – creams etc. That’s so sweet. Jack Bert, Ari’s grandfather, brings us everything medical that we need from the Linkwood Pharmacy at cost, it’s perfect. I make breakfast, lunch and supper most times. Supply all blue linen, pillows and blankets. When the nurse Anna’s not here, Sheryl and I do all Ari’s exercises, as we are always in the know about what his body needs to do.
Michelle the OT does interesting exercises to make his muscles do everyday things and Pippa the physio makes his whole body strong. But with experience, Anna, Sheryl and I know how to stretch him so that he will be ready for them.
Ari said, “I’m cold!” I fell off my chair and had to ask the nurse Violet if I had dreamed it. When Sheryl came in, I asked him if he wanted some soup and he said, “YES PLEASE”. We all died and went to HEAVEN!
Ari was hungrily gobbling up a packet of jelly babies – a feat in itself, since he had to put each little sweet into his mouth after tweezing them out of the packet first with his clumsy thumb and forefinger. I thought, aah, can’t keep that to myself so I went to call Sheryl in her office. She was a little busy, so I went back to my comfortable armchair next to Ari’s bed and took up my Asterix book. The nurse Violet was writing her report in the next chair.
- “I’M COLD.
- Wharrt ???”I turned to Violet and said “did I imagine that, or did he say “I’m cold” ??”
She just opened her mouth in answer. And I slipped off the armchair in pure amazement, landing on the floor just as Sheryl walks in – and I tell her, “ Ari said I’m Cold !!!” No, she didn’t believe me. Sheryl goes to her son’s bedside and says, “say that again?” So Ari obliges, and whispers I’m cold – the lip movement was very clear and very visible. Leonard walks past the door and turns his head as we scream and squeal – he doesn’t believe us !
Later I ask Ari if he would like some of his Grandmother’s soup. “BALISE” um, what was that ? Leonard walks in. “PALEASE” !!! Leonard’s heart skips a beat, you can see it on his face – just like ours did ! Oh my goodness !!! Ari’s talking, there can be no more doubt ! Sheryl and I dance around and squeal some more, great big hugs in order, as Ari stares at us half stunned at all this commotion he doesn’t even know he’s caused !
The words seem to come out with much difficulty, but much intention – Ari knows what he wants to say, but he must plan it. Sheryl said, look, when Gaëlle kisses him, it seems to get the process going – because he sometimes makes his tongue wiggle around in his mouth when I kiss him. So we tried that a few times – not a bad way ! you see him practicing the wording under his breath before a very deep groan turns into an almost inaudible word.
Sunday 4th July 2004
Ari has spoken !!!!!!!!
Yes, I did fall off my chair when I suddenly heard him say “I’M COLD” – gee, he could have said “Hello Gaëlle” !
This is it ! I believe now with Ari being able to say what he wants, we are going to leap around the moon like astronauts on a fish hunt in space. Hum, yes. I am indeed ecstatic ….
Saying one word takes Ari a good deal of planning and thinking right now, and much super-human strength, but I have no doubt that each day is going to bring him back new vocabulary, and greater ease.
To New Fishing Grounds ! To Outer Space !
Monday 5th July
A new era has begun – a new person has entered our home, and the patient has left it. Ari’s started having fun exploring all the things he can say, and all the ways too. Sense of humour, here we come ! He knows his name, mine, Zoë and Luca. He calls everyone by name that comes to see him. So we know he hasn’t lost his memory of names and faces. Sometimes he starts babbling on without taking a breath in between, and so his words become lost in the air – it is often quite difficult to understand what he wants to say, as if he were whispering in gibberish. But then a word stands out and it all makes sense.