Monday, December 29, 2008
Today she made it through with her three Grace, Luc and Jacob and one extra friend. We got the Christmas tree cake we'd made out the freezer and even though the smarties had run somewhat the children almost finished it in one sitting!
J had a great time playing with Grace who is 2 years older than her, but Noah and Isaac seemed a bit overawed by the noise and played quietly by themselves.
Hannah and Joe came too. Joe tells me he has visited us every day this Christmas. I think he's at a bit of a loose end as he has recently split up with Abi his wife of five years. Still we enjoy having him around and he is even helping out a bit with making coffee, fixing the computer for me and a little bit of child care!
We decided to take the kids swimming and try out Isaac's new Australian swim suit with floats in it. On the way we did our usual talk through the rules with Noah. "No running, always stay near an adult, listen to what mum and dad say" He knows this stuff and can even answer questions about what's good to do and what's naughty.
We had a great time until Paul had to get out to the toilet and leave me for a few minutes with all three little kids (Noah, Isaac and J) I turned to talk to J for a minute and then suddenly Noah wasn't there. Luckily I was wearing my glasses - harder to swim but at least a chance of seeing where kids are. I couldn't see Noah but I could hear him laughing and worked out he was in the adult spa just as I saw a life guard going over to the spa. A cross voice and counting to three and he was back with us. Paul and I had a little talk with him and he seemed to be settled and playing well again.
Then he sudden;y got out the pool and ran towards the other top pool and got in. I shouted at him in a very cross voice (I could tell it was cross as every other child in the pool apart from Noah looked at me in alarm!) and he deliberately disobeyed and went further into the water.
I sent Lily round as she's a good swimmer and lumbered after her myself. I got round to the top pool just in time to see Lily reaching Noah who was just out of his depth floundering a little with a life guard on the side about to go in.
Noah did have a cry then and seem to realise his behaviour had not been safe. He also had to go without watching his Wall-e DVD for the rest of the day, but any punishment that comes after doesn't really seem to teach Noah anything. We can't punish him by not letting him go swimming as this episode has made it clear he needs to be able to swim.
We have so many similar difficult behaviour episodes with Noah. He is always sorry after the event it's just that when he gets something into his head he looses all capability to think.
Saturday, December 27, 2008
Our Christmas Eve concert was the usual untuneful success - it is a family tradition now to start Christmas by lighting all the candles including the central candle of the advent crown while someone (this year J) reads "and she brought forth her first born son and laid him in a manger as there was no room in the inn"
Then follows Christmas singing and acting that has followed more or less the same format since 1992 - the video we have of that year shows Joe Sam and Beth put their all into it, playing trumpet, violin and recorder respectively and not trying to drag out the singing as they do now.
Lily was allowed to cast and direct the nativity play. She cast Sam as the innkeeper again this year, but whereas last year he had to play it in the style of Lord Voldemort this year he had to be "the joker" from Batman! Joe had to be the donkey and carry J on his back to Bethlehem!
Our concert also included dances to "Nothing but a child" by Lily and Isaac (Isaac's role was to sit in the highchair and have Lily stand on one leg and touch his head each time the words "nothing but a child" appeared). We also had "Last year I gave you my heart" choreographed by J. this included Noah J and Lily leaping forward and shouting "you gave it away" and reduced the audience to tears of laughter.
After the concert we open presents from the brothers and sisters to each other. This tradition was started when they were younger and in all the presents of Christmas day the small ones they had bought each other could get overlooked. Now these are their main presents and Hannah works most years to arrange a secret Santa so they don't have to buy for everyone. One of the best things this year was Lily giving each of her older siblings movie vouchers - however she had divided them up totally unevenly!
Hannah had made a Wall-e costume for Noah as this is his current obsession. He also got 2 Wall-e books, some Wall-e colouring books, some Wall-e snap cards and the Wall-e DVD which Santa bought in San Francisco as its not yet out in NZ.
J did very well with her favourite character Hannah Montana, getting Hannah Montana pyjamas (again from a well-travelled Santa who'd bought American clothes!) a Hannah Montana hat and wig, 2 Hannah Montana towels and a Hannah Montana mug.
I've been trying to explain to J that sometimes the best presents aren't actually those wrapped in wrapping paper but things people do. She is finding this quite hard to understand but I told her that Isaac learning to walk is a Christmas present to us, and that J herself is a present as we had no idea this time last year that she'd be here.
It is a moment that I will count as a present although it is bitter-sweet to remember sitting by J who is such a confused and hurt child during our church carol service and hear the choir sing
"Street child, beat child, no place left to go;
hurt child, used child, no one wants to know.
This year, this year, let the day arrive;
when Christmas comes for everyone, everyone alive.
Grown child, old child, memory full of tears;
sad child, lost child, story told in years.
This year, this year, let the day arrive;
when Christmas comes for everyone, everyone alive. , "
ps. Our house is coming on well. It's now got the shutters outside the study window and one of the balconies (which we hope will look better when painted.)
Thursday, December 25, 2008
We then went to the hospital canteen to wait for Paul and J was enthralled looking out the window watching the hospital rubbish be collected. Paul took us to his office where the other doctors spoke to J and she was allowed to look down a microscope at what she described as some purple dots and orangey things, then she got a Christmas chocolate from the secretary's office and on the way out saw some bags of blood in the blood bank. She was delighted by the whole visit.
Today's visit was unfortunately not quite so joyful. Isaac woke crying at 5.30am (nothing surprising about that) but his whole bed was soaking as his mickey button had come out and his feed pump had just fed the sheets rather than him.
We expected it to be the usual routine job to reinsert it, but discovered the gastrotomy hole had almost closed up and the small hole was not leaking at all which meant the button must have been out for a while. When we tried to get a new button in it just wouldn't fit and the gastrostomy started to bleed.
We phoned children's ward who luckily were very quiet with it being Christmas and they said to come straight in. Santa of course had filled stockings and left presents on the end of the beds of Noah, J and Lily who weren't yet awake and we didn't really want to wake them up and cart them off to hospital to start their Christmas day. So in end just Paul took Isaac in, with me worrying that this was going to mean a helicopter flight to Wellington or Auckland paediatric surgery unit to get the gastrostomy reopened.
Immediately after Paul left the children woke up of course! J was very pleased that Santa had answered the note she left at end of her bed.
We had a rather muted stocking opening at around 6.30 and Lily prayed for Isaac. I phoned Paul at 7.20 and he said they'd just managed to put another button in. They'd first put in a size 10 nasogastric tube, then after a while changed to a size 12 one and finally were able to change it for a size 14 button.
So by 8 O'clock they were back home - Isaac with a new toy for being in hospital on Christmas day and Paul pleased at having been spotted by some of the nurses from his ward who'd said "Eager to do a ward round today are you?"
So now we're celebrating our usual noisy Christmas with the added bonus of Isaac not needing surgery!
Monday, December 22, 2008
We're into Christmas events in a big way now. It was Christmas in the square on Saturday night - but as it rained it couldn't be held outdoors so was instead Christmas in the arena. A concert till 9pm when it was getting dark. Then the Salvation Army band led some carols, and people waved glow sticks as wax candles weren't allowed in the arena. I love the carols but it's interesting how most of the crowd disappear then not keen to include Jesus in Christmas.
Afterwards as it was already so late we said we'd drive past some of the lit up houses. One house is being featured on "Mucking In" - NZs cheaper answer to Extreme Makeover - house edition. It is now covered with lights and the owner dresses up as Santa and gives out gifts to children. It was quite special seeing how excited Noah was queuing in the dark.
Yesterday - Sunday was also a late night as we went to the carols and lessons by candlelight service at church, J and Noah behaved well, bribed by the thought of mince pies and Christmas cake at the end. Isaac entertained the people in the pew behind and attempted to join in with one choir item.
We bought the DVD "The Nativity" to watch on Sunday afternoon. Lily was entranced and today has spent a long while acting our the labour pains of Elizabeth and Mary!
Friday, December 19, 2008
I politely told friend she had to wait one hour between calls to us and told Lily not to wear her I-pod all the time. That same afternoon Lily went out to post a Christmas card and J on her way home from school saw Lily going the wrong way. I decided to phone her mobile but of course she couldn't hear it as she was wearing the I-pod.
After an hour and a half she returned home. She had decided to walk to where she knew there was a post box (not to the one I'd taken her to the week before!) which was unfortunately in the middle of town!
We always wanted Lily to be as independent as possible and now we're finding out what that means!
Wednesday, December 17, 2008
She was out shopping with her friend who also has DS. This friend told Lily she had no money so Lily paid for lunch. She then told Lily she was poor but Lily was rich. (This is due mainly I think to her parents being a bit more sensible with money than us and not allowing the friend unlimited access to her invalid's benefit)
Lily felt so sorry for the poor family that she bought a playstation game for the friend's brother and another for the friends sister (people that Lily does not know) - a total of $130
To make matters worse Lily and her friend (who had of course chosen games that they quite liked too) decided they should try the games out just to be sure they worked!
Paul and I got told this story when we got back from San Francisco (along with the one about Lily being missing one day as she'd gone to watch High School Musical 3 again, totally by herself) We spent some time trying to explain to Lily that you don't usually buy presents for people you don't know, that the family isn't really poor, that $130 is a lot of money etc etc None of this really made sense to Lily - after all she was just being kind. (I know a similar story about a friend of mine who's teenage son with DS bought her a $500 necklace last Christmas - but I digress)
Last night Lily's friend's mum phoned. Luckily Lily had bought the games from a shop managed by a man we both know who is father to a daughter with a chromosome disorder. He has agreed to give Lily a full refund!
So at the moment we're not letting Lily have access to her bank card when she goes out with this particular friend and Lily is supposed to talk to us before buying anything. But does anyone have any idea how we can help her understand why her behaviour wasn't appropriate?
a terrible picture of the boys but it shows their T-shirts that I got in AmericaJ is sitting in Isaac's pushchairthere was a Fijian and a Tongan choir then a donkey came along and gave rides
Tuesday, December 16, 2008
Reading through their website I was struck by this introduction to one of the leaders
"Pastor Guest believes that religious institutions in their claim to represent God’s cause in the world are thereby obligated to reach out first and foremost to the victims of affluence, and then work with the same in the process of recovering their humanity." - rather harsh I though at first but then remembered Jesus words to the rich young ruler.
I've read a few reviews about the church (how funny to have a site where you can write a church review!) where the comments that made me think most were
"They acknowledged a variety of beliefs, including the lack of belief, and noted all were welcome there. My favorite part was when one woman announced at the end of a song, "God loves you and there is nothing you can do about it!""
"The point at which Reverend Williams said that we must leave even our theology in the empty tomb was the point at which I could have given my life to Jesus... "
"As for Williams' message -- it can be reduced to this: "I'm a sinner, and I'm OK. You're a sinner and you're OK". Not exactly ground-breaking stuff, and also pretty much useless. Personal empowerment isn't Williams' message. It's "if you're hungry (even if it's because of your own laziness or irresponsibility), our organization will take up the slack indefinitely. If you do bad things, a supernatural being will forgive you." Free food and free absolution are just as much enablers of learned helplessness as are crack or heroin."
"If Rev. Williams seeks to create a community church which welcomes all for who they are, that is fine. But to carry the illusion this is a Methodist Christian church teaching Biblical values is a sham."
"Glide does everything my church talked about doing. I think if God was walking among us today; he'd be attending this church."
Saturday, December 13, 2008
One of the worst views of San Francisco and unfortunately the view from our hotel room! Paul declared it the worst hotel he'd ever stayed in in America but as there were 23,000 delegates at his conference, there was very little hotel space. The Mark Twain hotel is on the edge of Tenderloin, a rough district so there were lots of street people begging as we approached the hotel and lots of noise of drunks at night. The room was very dark (this picture looks better than it was as it was during the short period that sun shone on the wall) and needed lights on all the time. It also had a very small bathroom with no big towels, didn't provide breakfast and didn't have tea and coffee making facilities. We paid (or at least Paul's CME budget did) nearly $300 NZ a night for this!Our hotel was a lot nicer than the accommodation here at Alcatraz though! Here I am standing by one of the 5 feet by 9 feet cells that inmates spent up to 23 hours a day in.
We would highly recommend the trip to Alcatraz. It's part of a national park and I assume that's why it's not more commercialised. No cafes and only one gift shop, a great commentary to listen to as you walk around and wonderful views
Looking over to San Francisco and the Bay Bridge - the prison is so close to the city that sometimes the inmates could hear the noise of Christmas parties and be reminded of what they were missing
Looking the other way to Golden Gate bridge
Back by the piers I couldn't resist a photo of a fire hydrant - very different to anything in NZ or UK
If you look carefully you can see me standing by the red present at the bottom of this enormous Christmas tree. We had our lunch at Hard Rock cafe which you can just see behind. NZ doesn't have a Hard Rock cafe and I still have such fond memories of taking Sam to the one in London when he was about 10, so we tend to end up in one whenever we see one (although I gave the one in Singapore airport a miss earlier this year)
Another good place to eat we found was Boudins - they make the sour dough bread that San Francisco is famous for. Here Paul is having some chilli served in a bowl made from the bread - you finish your soup then eat the bowl!
We travelled for nearly 24 hours to get back. We left our hotel in SF at mid day - 9am NZ, flew an hour and a half to LA allowing plenty of time for our NZ flight at 7.30. The plane was really full with Christmas so near but we arrived a little early in Auckland (12 and a half rather than 13 hours!) at about quarter past five. We were then very lucky and manged to transfer to an earlier flight back to Palmerston. In fact we were back home by 8.20am in time to take Noah to school and immediately get cross with Lily who was walking around in her pyjamas when she should have been on a bus to work at 8.15!
Hannah and Joe were both delighted to have us back and said they may not volunteer for the job of caring for Isaac, Noah and Lily again!!
Thursday, December 11, 2008
Tuesday, December 9, 2008
Our hotel doesn't do breakfast and doesn't have a kettle so we have to buy bottled water and bagels from "Bristol Farms" which must be the world's most expensive supermarket!
Highlights have been going to Alcatraz - we had stunning sunny weather for that one day and for me going to Glide Methodist church. I am going to buy the book and movie "In the Pursuit of Happiness" as apparently the church is mentioned in them. I love their slogan "Radical inclusion". Paul is learning lots of haematology there are 23,000 delegates and lectures from 7am till 6.30pm.
I've enjoyed shopping but can't get the hang of the tax system or the American coins. The exchange rate is really against us at the moment so almost everything is cheaper in NZ.Macy's department store has so many offers though that we've brought a few things there.
Today Paul took lunchtime and the early afternoon off and we had lunch at "the Cheesecake factory" (we'd forgotten how big meal portions are so didn't have room for the planned cheesecake!) then walked round Chinatown. Yesterday we visited MOMA the modern art gallery where Paul thought he could have painted most of the pictures himself!
We're so proud of the kids especially Hannah, coping back home. We'd have been even happier if we hadn't heard from them that Noah had climbed out his bedroom window and been brought back home by a neighbour!
Wednesday, December 3, 2008
So at 8 O'clock this morning when I noticed the front door open, I quickly discounted the thought that Noah had taken himself off to school as I saw his sandals and back pack were still in his cupboard. (Every day he tells me he wants to walk to school by himself and every day I tell him he needs help to cross the roads). I carried on getting Isaac's nappy changed and dressing him, while calling Noah's name and telling myself Paul had left the front door open on his way to work. There was no response from Noah, and Lily and J couldn't see him in the garden or the playroom so it dawned on me he must have left the house.
I put Isaac in his pushchair and with that very calm voice that doesn't quite mask the worry within told Lily and J to stay in the house (J has major anxiety issues over this but I wasn't thinking about her) while I went to look for him. I walked along the first two roads of the route to school calling his name, then decided I'd better go back home and phone school to see if he'd turned up there. Just as I turned round Noah called out from the garden of a nearby house - not of anyone we know. I marched him home asking far too many far too complex questions in far too angry a voice and found out nothing. Later I worked out he hadn't heard Paul say goodbye to him when he left for work so Noah had decided to go out and find Paul.
I'd just recovered from this when J's taxi came. I went out to say gooodbye to her leaving the door on the latch so it wouldn't lock behind me. Next thing I know Noah's by my side waving J off and when we get back to the house I see the door is locked shut as he's fiddled with the lock. Th back door is locked too so Isaac is alone in the house.
This is one time when it's lucky to have a daughter flatting just across the road. I pull Noah across the road to Hannah's house and we knock and shout until we wake her up and she gets out of bed to give us her key.
I can't think of sensible consequences for these acts so instead Noah will get the ultimate December punishment and have to giveaway the chocolate from today's door in his advent calendar.
Tuesday, December 2, 2008
Travelling without any children is going to be so much easier - I think even the twelve hour flight to LA will be peaceful. Paul will be at his conference of 15,000 delegates and I'll be Christmas shopping and reading novels and trying not to worry about everyone back home.