2 Cor 12v9

Monday, 31 January 2011

Hospital Perks

We had another mixed up weekend. Scooby had continued to deteriorate all week, until he could hardly function on Saturday. He had several localised seizures in his face and hands, and was so shaky that he couldn’t hold a drink to his mouth without it spilling. Eventually we took him to the local hospital, although we weren’t sure they would be able to do anything. We were really glad we did though, because he got the point where he couldn’t speak at all, then finally had a full body seizure while we were there. Thankfully he slept really well and when he got up the next morning, he was able to move around fairly normally again and we came home at lunchtime.
Tomorrow we go to see his consultant in Manchester, and depending on what they see when they assess him, we may stay in for a couple of nights. I’ve packed up just in case.
Unlike us, Scooby is very excited about this due to the enchanting beings they have in the Royal Manchester Children’s Hospital known as play specialists. These are people who hold the keys to wonderous cupboards of stuff in endless supply to keep children entertained, and give gifts galore (like colouring sheets and activity books) to help take their minds off their current situation. My only complaint may be that these people are too good. Once exposed to their wonder, children become entranced and forget everything about the trauma of hospitals – the needles, the tests, the lying still for brain scans – and begin to beg to go back again. They there are trying to recover at home with their boring old usual toys that they’ve had for months (or even years) and – even worse – they have to share (share!) them with their siblings too. And as for mum, who always seems to be too busy doing unnecessary tasks like cooking food or folding laundry, she can’t hold a candle to John from ward 78 who has all the time in the world for Junior Monopoly and games of bowling on the Wii.
So although we are hoping to come home straight away again, he will be vying to stay. Either way, someone will be happy by the end of tomorrow.
Just in case, I’ve stashed my new Jodi Picoult book and my hardly used DS in the overnight bag too  – well John can’t be expected to occupy everybody at once, can he?

Tuesday, 25 January 2011

Institutionalised

~~~Thankyou so very very very much. I am so grateful for the people we have in our lives who are willing to take time out to find out what’s happening in our world, to pray about it and to give words of encouragement and empathy. It makes a hugely massive difference, it really does. Some days I can almost feel it carrying me. I can't say it enough - thankyou.~~~

On a different note.......
Turtle came and asked me what a word was the other day – ‘I can’t remember what it is’, he said. ‘Is it demented?’
‘What are you trying to say?’ I asked.
‘It’s a word for people who are at home a lot, like you.’
‘Domesticated?’ I ventured.
‘Yes, that’s it!’ he skipped back to write it down.
Leaving me behind to contemplate the difference.

Saturday, 22 January 2011

Dark Days

It’s been a tough old week.
There’s been another slight change in Scooby, mainly in his hands and face. He’s had moments in the last six months of stammering and getting twitches in his cheeks but it seems to be much more frequent recently. Sometimes it’s like watching someone in a faulty video – you know, if the tape’s slightly chewed, and the screen flickers? That’s what I keep thinking as I watch him talk and his mouth or cheek seems to move the wrong way, like little spasms in the muscle. He’s completely undeterred by it, and will keep talking anyway, sometimes starting his speech again if he feels it’s not coming out right. Occasionally I’ll stop him and get him to rest if his cheek’s moving too much because it seizes up and he starts to panic.
His hands are the other place that the spasms start, especially as he’s doing something fiddly like getting his seatbelt on, or pushing his arm through a sleeve that’s got tangled. The other boys are good at helping him when he needs them to, which is good because it’s building teamwork and a sense of reliance on each other. He’s struggling to do most things that require a great deal of muscle control, like cutting with scissors, or fastening a button. Although he doesn’t normally sit still anymore (because of the medication, or to compensate for the involuntary movements, I don’t know) when he tries to be still, you can see his hands trembling slightly all the time.
I contacted his consultant on Monday to let him know he was getting worse, and within the next few hours Scooby had two more seizures. One was a small one on Monday night, which he has occasionally had since being on the anti-seizure drugs, but the other was a big one on Tuesday afternoon as we were getting in the car. He didn’t regain consciousness for about ten minutes afterwards (which feels like forever while you wonder whether to call an ambulance or not) but eventually he came round and then slept it off for a couple of hours.
Thankfully his consultant was with the neurologist at the time so when I rang they were able to advise me to increase his medication, and in the meantime they are trying to move the next procedure forward as it’s clear things are still deteriorating inside his head.
The news we received last week was that the biopsy has given them a different picture than the material found on the lungs. Rather than it being inflammatory or like an immune system dysfunction, it looks like the patches in the brain may be cells that have starved of oxygen and/or blood. It’s possible that this happened as a knock-on effect of an faulty immune reaction somewhere else in his body (which would connect the different findings) but what they need to do to confirm that is more investigation into the blood vessels going into the brain. His doctor compared it to the process that happens to the heart when people have angina.
What we are waiting for now is a way of conducting these investigations, as Manchester haven’t got all the equipment in place yet. He may need to go to another hospital to have it done, or they may be able to get the equipment into Manchester for him or, if everything is taking too long, they may just have to start him on a course of treatment to open up the blood vessels, which would hinder their investigations and the long-awaited diagnosis but may stop this awful degeneration from continuing.
So now we are waiting.
And that is why this week has been a tough one. Because it is now exactly a year since all this started. In retrospect, the process in his body must have already started months (or even years?) before then, but we were blissfully ignorant about it and had no idea what was about to happen. We went from a possible stigma in his eye, to suspected inflammation of the sinuses, to a presumed brain tumour in less than a week. This day last year we were in an ambulance in the dead of the night headed straight to a consultation with the top paediatric neurosurgeons in the country. Obviously, the next few days that followed changed everything again as they began to find more pictures of the puzzle, but there was always a voice in my mind saying ‘Well, at least it’s not a tumour, whatever it is,’ and that’s always helped me to keep things in perspective.
But there is a tiny bit of me (the voice behind the voice) that says ‘But at least they would know what to do with a brain tumour.’
I’m not belittling how traumatic a brain tumour is. I know that if it had been one, we might have lost him already by now, or he may have had the expected surgery and we might have spent the last year looking after a very ill or permanently brain damaged child. He might still have been fighting it now, and having seizures, and endless hospital trips, and uncertainty about the future. I am so grateful that we didn’t have to go through major brain surgery or chemotherapy.
But I never ever thought that a whole year on we would still be here still wondering if all those things were going to happen. Because they are still a future possibility. Thanks to the biopsy, they know it is not cancerous or a tumour, but they still don’t know whether he may need radiation or chemo or surgery or any other of the best and worst treatments out there. We still don’t know what this process is that seems to be marching on through his brain, and how it can be stopped and where it will end. We don’t know why he can’t seem to function without the steroids and why his body stopped working without them.  We are still watching, sitting, waiting and I really really wanted to NOT be doing that today. I wanted to be able to say ‘Wow, remember this time last year when we thought it was a tumour? What a relief!’
This is not a rant about the NHS. I LOVE the NHS. Without it, we would be thousands and thousands of pounds in debt (or in piles of paperwork between the insurance companies) because of the biopsies and multiple MRIs and other scans and tests, and we would constantly be doubting whether we were choosing the right doctors in the right hospitals or whether we needed to be spending more cash flying him somewhere else to someone who claimed to be the best. Instead, we have been given the best doctors without having to ask for them, and they in turn have spent hours and hours of their valuable time researching and communicating on our behalf with top specialists around the world. I know that things are moving slowly because we have the best and sometimes the best are required at conferences and to give their expertise to so many other cases. It’s also moving slowly because they don’t know what it is and so they need to be absolutely certain before giving any treatment that it is going to be beneficial and not ruin their investigations by covering up symptoms or making the process worse. I am so very grateful for this.
But I am tired. And frustrated. And sometimes scared. This is a post of those things, and soon I will write another post (I promise! J ) about the good things, and the blessings, and the way God has held and supported and cushioned us, and proved Himself faithful to us over and over and over again. This has been a much bigger reality in the last year than days like today when I feel stretched and down and unsure. I’m writing this to be honest about the worst parts of this journey we’re in, because it’s important to face them. There are days where God does have to bring me face to face with what we may be facing and say ‘This is real,’ because if I don’t have days when I shake with fear (like last Monday after his fall downstairs) or cry over making the simplest decisions because I don’t know what the next few weeks will bring (on Wednesday in the car on the way home from preschool), then sometimes I think I am exercising faith when it is really denial, or experiencing peace when it is really numbness.
Thankyou God that we are allowed to surrender to bad days to help us keep the rest of life in perspective!
(But whenever You decide it’s time to get past this bit of our lives and move on - I’m ready. Just sayin'.)

Thursday, 20 January 2011

Why I Enjoyed My Brief Period of Home Schooling

Scooby started asking what different buttons on the car dashboard did. So I told him.



This one is for chopping the car in half. The back end comes off and slows to a stop in the road. The front half is okay because it has the engine and the driver so it keeps going.





This one chops the car in half again, but vertically. That way you can get rid of the passenger side, so if you’re the driver you don’t have to share with anyone else. It will be a bit breezy though.





This one is for the ejector seat. Every car needs an ejector seat.





This one spins the car round suddenly in the road. Very useful if you're being chased by bad guys.





This one makes the car and everyone in it suddenly freeze. This will make the bad guys suddenly crash into you and smash their own car into smithereens, and it also has the added advantage of making you impervious to bullets. It is pretty difficult to switch it off again though, due to being frozen.


This one turns the car into a triangle shape. This is useful if you find yourself going through a triangular shaped tunnel or you need to fit through a crevice in a rock. We can’t leave it on all the time though, or our heads would be squashed.




This is the self-destruct button that blows up the car. At this point, he asked his first question: ‘Why would you want to blow up your car?’
‘Because sometimes,’ I told him, ‘people get bored.’
He was very satisfied with my answer.

Sunday, 16 January 2011

The Incredible Hulk: A Repost

16th June 2008
Here’s a typical on-the-way-home conversation that I am subjected to on a regular basis. My children are bombarded with all the advertising and merchandise that is actively targeted towards six year olds (examples include dressing up outfits for Pirates of the Caribbean, sticker books for Iron Man and Kids Meal toys for Spiderman and the Fantastic Four) but because of the language and violence, the movies themselves are rated 12……
Turtle: Mummy, have you seen the new Incredible Hulk movie?
Me: No, but I used to watch it on TV when I was little.
Turtle: The movie?
Me: No, it was on the TV. Like one of your programs.
Turtle: Oh. Was it a cartoon?
Me: No, it was a, erm, real life, you know, like…. (drawing a blank)….not actual real life, but with real people in it.
Turtle: Oh. Who was the baddie?
Me: I can’t remember.
Turtle: C’mon, tell me.
Me: No, really, I can’t remember. It was a long time ago.
Turtle: Was it the Abomination? (referring to something he’s heard on the advert for it)
Me: Um, I don’t…. Oh! (suddenly remembering) Well, the Incredible Hulk was actually the baddie, but he didn’t mean to be.
Turtle: (blank look) How was he the baddie?
Me: (excited to be remembering something useful to a six year old) Well, he drank a potion and it meant that whenever he got angry, he turned into the Incredible Hulk, he did things he didn’t want to do.
Turtle: So why did he drink the potion?
Me: Well, he didn’t know what it was. He was trying to make something else and he made a mistake.
Turtle: What was in the potion?
Me: Um, I don’t know.
Turtle: I think it was…….eyeballs……green syrup…..and……some dirt.
Me: Okay.
Turtle: What colour was the potion?
Me: Er, I can’t remember.
Turtle: Was it pink or green?
Me: I think probably green.
Turtle: Yeah, I thought so.
(settling back in his chair while I sigh with palpable relief at having given satisfactory answers, until…)
Turtle: What did you do when he drank the potion?
Me: Well, he turned green and got so big that he ripped his clothes, then he started to break things and…
Turtle: No. What did you do when he drank the potion?
Me: (pause) What do you mean?
Turtle: How did you feel?
Me: (wondering whether they have started teaching Key Stage 1 counselling as part of the new Ofsted regulations) Well, I was appreh…. I was worried, because I didn’t want him to do it.
Turtle: Yeah, but were you like this….(pulling anguished face) or this…(scared face) or this….(hiding face behind hands).
Me: (struggling not to laugh) Er, like this… (pulling anguished face and hoping no other drivers are looking inside our car).
Turtle: Yeah, I thought so. (pause) What did you do when there was fighting on the program?
Me: Well, I don’t like fighting, so I was like… (trying to do a scared and reluctant face).
Turtle: (in disappointment) Oh.  What did your brother do? (paraphrase: because as a girl, naturally you are rubbish at watching and appropriately reacting to decent fighting programs on the TV, so I want to know what a male child would do in a similar situation.)
Me: Um, he was probably excited because he liked the fighting (paraphrase: I have no idea, I wasn’t really watching his reaction and know that he is actually a bit of a nancy who likes housework and cries at sad films, but I suspect that’s not the answer you wants to hear).
Turtle: Yeah, but was he like… (closed happy mouth smile), or like...(toothy happy smile), or like…(mouth open wide in a silent cheer).
Me: Er….(conscious of man on bike alongside us at the traffic lights)…like this (closed mouth smile).
Turtle: Yeah, I thought so. (pause) And what happened in the middle?
Me: (wishing there was less traffic so we end the torture sooner) In the middle of what?
Turtle: In the middle of the program.
Me: With me or Uncle Dave?
Turtle: (withering look) With the Incredible Hulk.
Me: Well, he, er, just, you know, the usual stuff like the police trying to get him and things like that.
Turtle: (astounded) Were the police the bad guys?
Me: No, the Incredible Hulk was the bad guy, er, but he didn’t mean to be the bad guy, it was because of the potion, so the police, er, they just tried to capture him because they thought he was the bad guy.
Turtle: (as if talking to a simple child) So, who was the baddie?
Me: Well, it wasn’t quite as straightforward as that, there wasn’t really a bad guy, they were just after each other, because they thought…because the Hulk did things he didn’t want to do.
Turtle: So why did he drink the potion?
Me: OKAY, WE’RE HOME!!!
At least it wasn’t as bad as the time he wanted to know what happened to King Kong at the end of the film. I made him ring Richard and ask him instead.

Thursday, 13 January 2011

A Review: Abby Scott



I have a wonderful, very talented and musical cousin called Abby. She brought out her debut album a few months ago and it is really actually very good. I’m not saying that just because I’m biased (which obviously I am) but also because it is really actually very good.
If you’d like to see and hear for yourself, her website is www.abbyscottmusic.com and she’s on Facebook too.
It’s got some really funky contemporary songs with pithy, to-the-point lyrics, some amazing make-you-want-to-cry soulful ballads, and – here’s what I love the most – some songs about REAL love. Not "I’ve just met you but I’m going to kill myself if I can’t be with you" drama queen type love, but the everyday, lasting, committed-to-each-other, stable type love. There are just not enough of these in the world, in my humble opinion.
Those are my thoughts on it, but in case you need any more convincing to check her out, here are some rave reviews it has received in our own vehicle:
‘I like this music, it’s kind of, hmm, yeah, cool.’
‘ Mummy, this song makes me feel all happy. It’s all about different colours and makes me think of Bonfire night.’ (Rosy)

'Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaahhhhhhhhhh.........' (That's the sound of a ten month old joining in with music she likes) (Fly Me Away)
‘WAAAH! I don’t want to go to school!’
‘Why not?’
‘Because I want to listen to the rest of the song!!!’ (Reconsider)

And: ‘Mummy, can you put it on song number four?’ (Fool)
‘No buddy, I’ve changed it for a Christmas CD.’
‘But I want to listen to number four!’
‘I can put it on track four but it’s not the right CD so it will be a different song.’
‘Can I hear it?’
(Song goes on)
‘This is the wrong song!!! Grrr! When will Christmas be finished?’
So there you have it folks.
Abby Scott. Better than Christmas.


Monday, 10 January 2011

Not The Best Way To Start A Week

We were all going full throttle this morning, getting ready for work, school and preschool, and I was feeling pretty smug (my first mistake) about being slightly ahead of schedule. Everyone was dressed and we were just waiting for the last child to come down, when I heard an agonised yell. I had just answered the door to my friend whose son we take to school in the mornings so I didn’t go immediately. I knew it was Scooby shouting but I still didn’t go. I thought of all those times I had heard him shriek and dropped what I was doing and shot up the stairs prepared for an emergency, only to find him simply struggling to get a sock on or shouting at Rocky for invading his room. So I waited, finished saying goodbye, and shut the door. As I did I heard a ‘thud thud boom’ from the top floor. I ran up to see what had been dropped.
There at the bottom of the top flight of stairs was Scooby, with his face down and his body curled up  shuddering over and over with a seizure. I rolled him over and into my arms and his face was covered in blood. He hadn’t lost consciousness but he had no control over his movements and was gulping in air and blood and spluttering it back out again. I yelled for Richard until he came with a towel to soak it up and just had to keep whispering in Scooby’s ear to try and calm him down so he could stop convulsing. The more upset he became, the worse it got, but eventually he calmed down enough for the jerking to slow down. When he was still and I managed to wipe his face, we could see the blood was coming from his nose which was swelling up and turning purple. He began moaning and trying to talk so I tried to calm him down again but by this time I was blubbering too and mouthing to Richard ‘I think it’s broken,’ and ‘WHY didn’t I come up sooner?’ so it took us both a while to calm down. We couldn’t move him until the effects of the seizure had worn off and he could move his fingers and toes again so we knew nothing else was broken. It felt like forever.
Richard scooped him up and took him off to hospital in his van while I carried on shaking and crying and trying to hide it while I finished getting the others ready. I rang the school and explained that we would be late and eventually managed to get my act together to remember lunch boxes, PE kits and everything else that we needed.
Monday morning is now my free slot in the week, which means three separate drop offs to get all the kiddos to where they need to be. I was twenty minutes late at each stop which meant I had to explain it three times, but I only burst into tears at the first one, over a nice classroom assistant when she asked what had happened. After dropping Rocky off at preschool I took Baby to the childminders and only as I got there did I realised that I had now talked to several people but hadn’t yet wiped the spattered blood off my face and neck. What a nice picture that was.
When I got home an hour and a half later after the incident, Richard rang me to tell me he had finally arrived at the hospital after being stuck in town for over an hour and then he’d had to park far from the hospital as the car park was overflowing. He’d carried Scooby, who was no longer bleeding but still couldn’t move properly, through the town centre to get there.
The next phone report, an hour later, was a much better one. After waiting in the reception for a while, Scooby had suddenly decided that he was feeling much better and began to whirl round in the play area doing what he called ‘A Tap-dancing Dance of Joy’. By the time he went in to the doctor, he was asked how he felt and he sang chirpily ‘I feel GREAT!’ So after a quick check up, they were very satisfied that his nose, and everything else, was unbroken and he was fine to go home. Richard left the place feeling like a fraud, which in my opinion, is the best way to leave a hospital.
Scooby has carried on being very jovial for the rest of the day – indeed, the highlight seemed to be the fact that Richard had bought him a bottle of Cherry Coke from the hospital and he couldn’t wait to share some with his brothers when they each came home.
I took him with me to do the school run so he could show off his war wound.
‘Is it very red?’ he asked me as we got back in the car, as so many people had commented on his swollen and battered nose.
‘I’ll show you,’ I said, and pulled down the mirror on the passenger side.
He inspected it, then pushed the mirror back up and said, as if he was a casual observer of the whole incident; ‘I don’t think I want to look at it anymore now. It looks very painful, doesn't it?’

Thursday, 6 January 2011

Happy Birthday Child No 1




Turtle turned nine on Tuesday – nine! That’s halfway to eighteen (which I’m sure you already knew).
We ended up, through a complicated but unfortunately not unfamiliar situation, in Manchester for the day to go to a hospital appointment which actually didn’t happen. As we’d all gone down together, we made the most of it and went to the Lego Discovery Centre at the Trafford Centre. It was a fun, expensive, memorable day.
Turtle is very proud of the fact he is nine. When I rolled him out of bed early on his birthday (due to our tight schedule for the non-happening appointment) he staggered out and went and stood on the stairs in front of the mirror, pulled himself up to his full height and gave a little smile.
‘Hmm,’ he smiled. ‘I’m definitely taller than I was when I was eight.’
He does seem to have risen to the thought of getting older in the last few weeks. As absolutely lovely and good-natured as he is, his head is often on another planet and he finds it hard to come away from whatever is running through his imagination at that moment. When he’s given something to do that conflicts with his inner monologue, like homework or tidying his room, he usually makes a fuss and will do anything to avoid it, but recently he seems to have risen to the challenge instead. I think he’s finally caught on to the fact that the sooner he does the job, the sooner it will be over.
He also seems to be learning how to use his imagination to help him in his jobs rather than hindering. A few days ago I was trying to bath them all alone and Baby wouldn’t settle on her own once she was dried and dressed but I still needed to get Rocky and Ace out of the bath. So I left her in Turtle’s charge, which doesn’t usually work that well as he usually gets distracted and wanders off or just forgets that he’s watching her until she starts gagging on a piece of Lego.


 








This time, however, I came back to a beautiful scene where a very quiet and fascinated Baby was being taught all sorts of valuable life lesson by her oldest brother.
‘I’ve decided she is old enough to learn about How to Have Adventures,’ he told me. ‘Now Baby, we’ve covered what to do in the desert (accompanied by a sweeping arm movement over his beige dinosaur bedspread and the cuddly toys arranged on it) so it’s time to move onto the ocean. The first thing you need to know for your Ocean Adventure is that THIS (flourishing a plastic shark from behind the drawers) is very dangerous, and under no circumstances should they be approached.’
At this point Baby gave me a huge grin as if to say ‘Have you heard this mummy? My brother is the cleverest boy ever and he’s sharing his wisdom with ME!’
She’s not the only sibling entranced by his entertaining powers. Turtle and Rocky share a room and so Rocky has always been closest to him out of all the brothers. When I say ‘closest’, I mean he reserves the right to take, play with, dismantle, and claim rights to any item that Turtle owns, while defending the same item to the death (or at least to the very-loud-howling-noises) if one of his other brothers touches it. He hero-worships him and wants to do everything alongside him, from sitting next to him at the table, to holding his hand when he crosses the road.
So much so, that on Tuesday in the Trafford Centre when we lost Rocky for three heart-stopping minutes and thankfully had him returned by a very kind lady, after I grabbed him and cuddled him to my pounding ribs with tears in my eyes, he immediately looked beyond me, his frantic mother, and wailed ‘Where’s Turtle? I lost my bwudder Turtle!’