2 Cor 12v9

Wednesday, 25 May 2011

Disney Day: A Repost

Friday October 10th 2008

I have outdone myself and have managed a feat any parent would be proud of. I have made myself seem some sort of earth mother.

Today, after weeks of build up and anticipation, was Disney day at school. Lessons were done around Disney-fied topics, the canteen food was all cartoon themed, and everyone, teachers included, had to dress up as Disney characters. And because I wanted to prove that even though I have continually lost letters, forgotten non-uniform days and repeatedly needed to be reminded of important events, I am not the worst mother ever Turtle had asked, I decided we could make our own costumes. That’s right, even though we have at our disposal in our dressing box enough pre-made items to make a Lion King, a Woody, and a Mr Incredible, I decided to go with his request and attempt to make a Wall-E from scratch. I asked Scooby who he wanted to be and he said Goofy.

‘Are you sure? Don’t you want to be something cool like Buzz Lightyear or Lightening McQueen?’

‘No, I want to be Goofy because ee’s funny and he dances like dis (mini demonstration) and says “Gawrsh!”’


And for Crash, I pretty much made the decision myself as he is prone to change his mind every couple of hours and chose a character from his favourite film – Monsters Inc.

So I spent Thursday trawling through Morecambe’s indoor market, trying to find thick elastic, superglue, fluffy blue material and plastic teeth, and I was pretty successful too (even if I did have to buy two fluffy blue dog toys so I could rip them apart and use their pelt as shoe covers).

Then I spent most of Thursday night, through to the wee hours of Friday, putting it all together. I have to admit that compared to the other kids in their official Disney Princess and Pirates of the Caribbean costumes, they did look a bit shabby. But you know what? I’m so glad I did it. When I showed them the pieces I had for their costumes last night, they were so excited. Turtle by himself took the initiative to colour the cardboard box we were using for Wall-E, and the other two joined in, crayoning the sides and the wheels. They loved it, and before they went to bed, we laid out all the things on the floor in the lounge. Then in the morning, hey presto! There were three ready-made costumes and I’ve never seen them get ready for school faster so they could get them on. It was a bit like Christmas (and anything Christmas-like makes me feel very happy :D).

And, not that I want to brag or anything, you know, but AHEM they did get honourable mention in assembly in front of the rest of the school. I don’t think any other bigger families had been crazy brave enough to try and make their own.

So here are the finished results:
October 019
Sully, Wall-E and Goofy (although if you didn't know that before I told you, I obviously haven't done a very good job!)

October 023
I could probably work out how to rotate this, but I'm tired and I can't be bothered.

October 024
Please notice the fine workmanship of the two-fingered gloves and the fact that the staples on the elastic held out till only 20 minutes before I went to pick him up.

October 021
My Goofy boy. Again with the non-rotation - sorry.

October 034
Thankfully we already had this hat - I just had to make and attach the ears.

October 035
He wore a pair of my shoes over his own shoes to get the slopey walk. I told him he should take the top shoes off for play time so he wouldn't fall over, but he assured me he could and would run in them and proceeded to lollop around the house to show me how.

October 022
My favourite blue jumper with purple spots added made a good body for Crash's costume. Halloween is a good time to get pointy plastic teeth.

October 027
Part of the decimated fluffy dogs, wrapped around a headband with silvery points (conveniently stuffed with the dogs' innards - don't share any of this with the children, will you?)

October 028
I ran out of carcass fluff to cover the whole shoes.

October 026
The whole happy crew. I made them, and their costumes too.

Wednesday, 18 May 2011

Facing the Future

Back in February, we started on the next chapter of Scooby's treatment, with a drug that would subdue his immune system. There was still little evidence that it was the immune system at fault, but as Manchester and Great Ormond Street between them had ruled out so many other conditions, we were left with few options. Two treatments were suggested and so we began on the least invasive and safest option of Azathioprine (generally used for transplant patients to stop their body rejecting the new organ). If it has been white blood cells going haywire in his brain, this would stop them in their tracks with relatively few side effects. Once he had been on this treatment for a few weeks, the idea was to reduce his steroid intake and see if he still manage. He hasn't been without steroids for the last 14 months so this would be a major breakthrough if he could.

He has been on the Azathioprine for a few weeks now, and unfortunately it doesn't seem to be working so far. Even before we reduced the steroid dose, Scooby was having seizures about once a week, but when we slightly reduced the dose these became worse, as did the shakiness in his arms and hands. We have put his steroid intake back up but it doesn’t seem to have solved the problem. It’s like the muscles in his arms are not quite under his control and he is having to use his whole arm, from the top of his shoulder downwards, to do simple things (like grasping a cup or a sandwich) that he only used to use his fingers for before. His left arm is much worse than the right so he is using it very little, and we are having to help him do every day things like getting dressed and putting his seatbelt on.

We still have a couple of weeks left of the initial trial of this drug but if it hasn’t started working yet, it looks unlikely that it will, which will take us to the second suggestion of a treatment, which is a type of chemotherapy.

Obviously we have been hoping that we will not have to go down that route. We are praying fervently that something else will happen to prevent it, but we are also preparing ourselves that it may be a necessary step. We cannot let his condition carry on unrestrained, especially as the steroids only seem to be slowing it but not stopping it fully.

Psalm 33:20

Because He lives, I can face tomorrow
Because He lives, all fear is gone
Because I know He holds the future
Life is worth the living, just because He lives

Wednesday, 4 May 2011

Doddi Wuh-Wuh

It’s been so exciting here in the last couple of weeks as Baby has suddenly started using words to communicate (yes, I know this is such a ‘parent of small child’ thing to say, but really, it IS so exciting! It’s like having a new toy to play with.)

Two weeks ago her repertoire consisted of: up, mamma (which she uses extremely infrequently), dadda (which she uses extremely frequently, with a little lilt on the end like she’s asking him a question which invariably means everything is dropped as she is picked up for being so cute – yes, he is wrapped around her little finger already), fish (shh!), more, and most randomly Batman, which she heard Rocky chanting one day and decided she loved the sound of it. So much so that as the boys keep experimenting with her, she has taken great pleasure in making them all giggle with it:

‘Baby, say apple.’


Giggle giggle giggle.

‘Baby, say chicken.’


Giggle giggle giggle.

Baby, say mamma.’


Giggle giggle giggle.

However, this week she has started using more words of her own accord. She points at things and says ‘Uh!’ which we think is ‘Look!’. She likes to drop things on the floor and say ‘Uh oh!’ and when giving and taking she says ‘huh-boo’ which is thankyou. Today at the shop I would hand her things, like a pair of slippers, and she would say ‘huh-boo’, then ‘uh oh’ right before she deliberately dropped them to the floor.

She has also learnt the word ‘doggy’ and can make a little woofing sound, but like her eldest brother at the same age, she wants to use it for every animal.

Tonight I read her and Rocky some bedtime stories. One book just had pictures of animals in, so as I turned each page, she responded in the same way.

‘Look Baby, a horse! Neigh!’

Doddi! Wuh-wuh!’

‘Here is a duck – quack quack.’

Doddi! Wuh-wuh!

‘This is a pig – (snorting noise that I’m not sure how to spell)’

Doddi! Wuh-wuh!

Rocky was giggling at it all, which was really not conducive to getting them ready for sleeping, but it was fun.

Afterwards it really got me thinking. At the stage she’s at now, watching her get this knowledge and begin to use is just incredible. It doesn’t matter that she’s using the words 90% wrongly – it’s the fact that she’s got them that’s amazing. Her knowledge of what she’s processing is so simple – ‘I think what I’m seeing is a dog. From my experience of the world, this looks like a dog, so it must sound like a dog. Therefore this picture = doddi, wuh-wuh.’

When people find God, the world is like this. What we had once been oblivious to suddenly becomes clear and begins to make sense. ‘Stuff was all around me before but I didn’t know what it was. Now I have started to realise and recognise the hand of God. It looks like God, it sounds like God.’ I imagine God in heaven going ‘Yesssss! She’s got it! Say it again! Fantastic!’

But we’re not supposed to stay in that place. What is an amazing first step is just that – the first step on a much bigger journey. Once we’ve grasped it, it’s time to move forward and learn. That thing over there looks like a dog – four legs, fur, long nose – but it makes a different sound, so it must be something else. It’s a horse. And on we move, learning new depths of experience and texture of this wonderful world around us. What we thought was amazing in the first place (seeing the hand of God in anything at all) becomes part of a bigger picture (seeing the hand of God in many new and previously unseen ways).

What hinders us so much in our walk with God is when we choose (unknowingly) to put God and His works in a box and think we know what is God and what isn’t.

So, for example, some people find God through answered prayer, and in the beginning of their walk with Him they see lots of miraculous provision and positive changes in their life. This is amazing and part of the awesomeness that God brings when we choose Him. But then what if, further down the line, not every prayer is answered? What if the marriage that was restored hits a rocky patch or financial difficulty hits? Some people believe (and teach their churches) that the Christian life is all about victory and prosperity and that’s the only way God works. Keep running after success, no matter what the cost, because that’s what the Christian life looked like in the beginning, so that must be the hand of God. But so often God in His sovereignty works through EVERY aspect of our lives, the good, the bad and the ugly, and we miss Him by refusing to look beyond the box we have put Him in. Within every experience in life there is a rich variety of depths, textures and valuable lessons but we so often miss them because we are looking for something that MUST look like and sound like a dog.

Or if we grew up in a fabulously safe and close-knit Christian community, there is so much simplicity in the early days – ‘If you walk your life like this, it will keep you close to God.’ There is so much truth in that and like a fourteen month old discovering what a dog looks like, it is fine to understand our faith on a basic and generalised level. But as we grow, in age and/or spiritual maturity, there is so much danger in that statement too. For all of us that grew up in Christian families, there will be certain issues that we find difficult to separate between personal choice and the work of God’s hand. We can easily judge other people based on their lifestyle choices and decide that a person who does things we would never do must be in the wrong. We deny the rich variety and individualism that God uses to reach out to every single person uniquely. We shake our heads and say ‘No, it must look and sound like this in order for it to be God’s hand, because that is my experience and my knowledge of Him.’

Don’t we all do that? It’s so much easier as people to categorise things broadly so we know safely what box to put things in, when we actually miss so much in our own lives and other people’s because we are too busy seeing only what we want to see. Let’s not be stunted in our relationship with God and try to fit Him into our limited view of the world! Let’s study Him, walk with Him, turn to Him in the middle of every circumstance, and talk to Him daily. Let’s keep that cute enthusiasm that comes from learning a new word and concept, and turn it to something new every day, instead of holding onto our old and limited knowledge of the truth. Foundations are just that – vitally important, but without anything built on top of them, it’s just an unused car park.

I don’t usually write down my rambling thoughts that come through watching my children learn, for fear of sounding either loopy or trite for spiritualising ordinary things, but it’s one of the biggest ways God brings things to my mind. It’s true what they say, that your children teach you just as much as you teach them. If only I could find the time to write it down each time it happened, maybe I wouldn’t have to re-learn things so often!

Lamentations 3:23