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Wednesday, 30 November 2011

Home Ed: The Whys and 'Why Not?'s

We're still at home! That's nearly four weeks and Scooby went for his third chemo intake last Thursday. So I can take a break from the medical updates to talk about school instead!

I can't really assess at this stage how 'well' it is going, but I'm certainly glad we're doing it. Over the summer, we went for a daily structured approach (apart from the weeks we went on holiday) and it seemed to go well. There was a timetable for each family member and things had a natural flow to them, which gave me the confidence to make the decision to home educate, but then the last week of summer hit and things have been haywire since then. The schedule had to go out of the window and although I tried to bring it back on calmer days, it had lost its usefulness as everyone was out of it rhythm. Also, Scooby could no longer do things independently, so neither he or I could do what we were doing before. So we shuffled and rethought and after several doubts about the whole thing, I decided to loosen up in some areas and firm up in others and things seem to be working well again.

The point of homeschooling was to take a break from the disjointed way we were living and try and to find a flow that made our family life and the kids' education stronger and more fluid. Last year was spent in a haze as I tried to keep up with four different timetables including school, preschool, child-minder and medical or educational appointments. The two younger ones slept at really irregular times because of their time spent in the car and would be tired and grumpy in the day and wide awake in the evenings. Scooby would manage half a day at school some days, and other days not at all. There were days I had to go and pick him back up after half an hour; and times when I'd wake Baby early from her nap, drive Scooby to school, realise he was too shaky to stay and have to bring him straight home again, then endure a full scale medication-fueled tantrum because he'd wanted to stay. He would eventually wear himself and fall asleep, at which point I then had to wake him up because it was time to pick up his brothers from school... Not fun.

Added to that was the fact that Ace, who has always had a strong speech delay and needed extra staff support at school (still waiting on a diagnosis for him too!) was retreating more and more back into his non-communicative state that we'd worked so hard to get him out of. He would come home and switch off, and I would still be frantically running round trying to get all the basic everyday jobs done that all the car time and grouchy toddlers had prevented me from doing during the rest of the day, so I wasn't in a place to be able to help him. Richard worked long hours on two jobs so he often wasn't home till late so he was exhausted too - and even Turtle had developed such a bad nervous twitch that we were considering taking him to the doctors!

During this time, I was following a few other mum bloggers to fuel my enthusiasm and keep me in perspective, and I was intrigued by a couple of them who home-schooled. Their way of life seemed so different to the way I was living, and I liked it. Then I got closer to a good friend who was home schooling, and had some good conversations and insight from it. I started researching it, and realised it could actually be the right thing for us at this time.

I was more surprised than anyone - my previous perception of home education was not a good one, and like most people, for three large concerns:
 1. How on earth can one person teach a child everything they need for the whole of their life when people spend years learning their specialised subject before they teach it? Surely that child will grow up with a really limited education?

 2. What about the socialisation? Cutting a child off from regular contact with his own age group is not setting him up to be able to cope with a wide variety of social situations in the future.

 3. Every mother needs a break! How can someone's sanity cope if their kids are with them all the time? It would drive me insane!

That's what you were thinking too, right? :)

Well, I'm not going to answer all three of those now (I'm tired and I want to go to bed), but let's look at the third one, shall we? As you can see from the above, I wasn't actually getting a break anyway. I had at least two children with me all the time, except for a few weeks in a row where I managed to wangle a two hour child-free period on a Monday morning, at which point I would run through my house like a headless chicken, managing to make a very small dint in the chaotic mess that was my house, which would be completely undone by Wednesday. It took me more than two hours to drop everybody off and pick them all up again for the sake of that 'me-time', and I had to pay money to do it! The lack of focus on anything other than getting everyone where they should be (including into bed...) was killing me.

Then, I spent the summer researching pirates with them, and we all loved it. Suddenly, we were all engaged in something together, coming up with ideas, playing games, reading stories, building a giant pirate ship, going on treasure hunts - and part of me woke up again. I was more chilled and relaxed and eager to spend time with them. The mummy-guilt that comes from always running out of time to do the things you wanted to do with them wasn't there. The house wouldn't have looked any tidier to an outsider, but I could see things changing - by being home more, I was able to keep chipping away at each job, and the boys could do it alongside me, instead of the frantic military style tidying we had always tried to do before at the end of the day - you know, the You-Will-Not-Leave-This-Room-Until-It's-Done type tidying.

I found that when I stopped searching for a break from them, I didn't really feel the need for it anymore. I just enjoyed them instead. So many mums of grown-up children have said to me that if they could go back and do it again, they'd home school too for the same reason. I'm not saying I don't get tired and wound up with them, but with less time pressures, we can slow thing down and have less of the stress points that we had before, and we can adjust our days depending on how we are all doing. With Scooby the way he is, plus two preschoolers, I wouldn't be getting time on my own anyway, so it made sense to me to get more of a handle on how we spend the time and make it better!

That's point three in a nutshell - will I still be thinking like that in a few months' time? Who knows? :) I'm viewing this as a break from outside pressures at the moment, so we may go back to how things were, or we may make a permanent decision, but for now I'm just happy to enjoy the time we have all together.

Friday, 18 November 2011

A Sigh of Relief



This is what I wrote a couple of weeks ago in hospital:

Life for us in many ways at the moment is a living nightmare. While we struggle to find a way to keep Scooby stable, he is constantly shaking and usually on the verge of a seizure. When he tries to move himself - as young boys do, because even if only one of their four limbs work properly, they will still attempt to move around the bed because they are not designed to sit still - he usually slips and bangs his head or gets stuck in a difficult position or brings on a seizure because of his movement. He needs us to dress him, feed him, hold a book for him and take him to the toilet. So we can't really leave his side for more than a few minutes. If one of us goes upstairs to get dressed or put laundry away, we have to make sure the other one is on duty on the ground floor. We take it in turns to sleep on the sofa as his hospital bed is in the living room, so we can be with him through the night. Richard tried going to work last week - he was only there three hours before I had to call him home, and he arrived back at the house at the same time as the ambulance. We can only seem to make it for two days at home at a time, and it’s become far more stressful having him at home than at hospital because there are more rooms, more children and more responsibilities to meet, and far less medical interventions at hand to help.

The stress on us is hard to bear but it’s far worse to see him struggling with his lot. He has rarely complained in the past, not even when his legs stopped working, but now that he can’t use his hands, he can’t do all his favourite things like colouring, writing and playing board games. He can read a little bit but we have to position the book for him and he can only manage a few lines before his eyes ‘go funny’. A lot of the time he just has to curl up on his left side to hold the shakiness back, and he watches TV and listens to books on CD or tells me what to write or draw in his activity books while he watches.

For some reason – I hope it’s due to the medication and not The Thing in his brain – his seizures have changed. They used to be short and sharp, so he would still be conscious but it would take over his whole body in spasms, but now they are shallower (sometimes we can’t really tell he’s having one – he tells us he can feel it and then we see little jerks in his hands and feet) and last for what feels like ages. We can give him rescue medicine up to twice a day if they go over five minutes, but each one lasts between ten and forty minutes and he’s having about ten a day so it doesn’t seem to be working. So once we’ve given the medicine twice and he’s on his fifth or sixth seizure of the day, we have to ring an ambulance to transport him safely into hospital. So far the only medicine that stops them properly has to be administered through a canula and there also happens to be a worldwide shortage of it - last time we were told that there were only five vials of it left in the hospital and they’d come from America and there was no chance of getting any more. (We were also told that if Scooby needed all five vials and a blue-light trip to hospital everyday so he could spend the nights at home, or free bed and board for as long as we wanted it, then we could have it all, cos that’s how great our NHS system is and I think the staff and the system are AMAZING – we are so blessed to live in this country.) So he has the medicine there and has about twenty-four hours relief from seizures, but by the time he has been monitored for a couple of nights there and he comes home, the cycle has started again.


I could have written more, about the stress and the unpredictability and the strain on family relationships and the chaotic mess that our house was turning into, but I stopped there because I knew I wasn’t going to post it up as it’s too negative and depressing and I hate being those things, and there was, for the first time in this journey, pretty much nothing positive to add. He was hanging on by a thread and so was our sanity.

But I can post it now because I want to show you the contrast. Two weeks ago, just after I wrote that, he changed anti-seizure medication for about the ninth time. He came home on weekend leave from the hospital and we carried on with the above, with slightly less seizures. He went back on Monday but he seemed more stable so they discharged him. We managed three, then four, then five nights in a row, and just as we were thinking he would have to go back in because the seizures had increased again, they suddenly changed in temperament back to how they used to be – short and sharp and over in less than two minutes. And then, after seven nights, they stopped altogether. And in the meantime he was beginning to do things we hadn’t seen him do in a long time. He was sitting up unaided, and able to hold a juice cup.  Then he started to shuffle on his knees on the floor while he was playing with his brothers, and trying to hold a spoon at meal times. Then he was able to climb from the floor onto the couch, and feed himself (very messily!) and grasp a chunky pen enough to be able to write very wibbly-wobbly letters. And he seemed to sort of wake up again too. His loud, excited voice was back (as well as his piercing ‘I-need-something-right-now! voice) and his words stopped being drawn out and slurred. Two days ago he asked if he could read the original Winnie-the-Pooh book. I gave it to him, thinking he would balk at the volume of writing and the tiny print, but he launched into it and read the first two chapters out loud without stopping while I stared at him, open-mouthed. He’s been using the laptop to do his schoolwork (his choice, not mine!) and teaching his little brother and sister how to draw basic shapes on the Aquadraw mat on the floor.

So, it could be the new anti-seizure drug that has made this difference, or the chemo having positive effects, or the amount of faithful prayer he has received, but in the words of his brilliant consultant; “None of us are clever enough to know what’s caused this change, but none of us are stupid enough to try and find out, so we’ll all just keep doing exactly what we’re doing!” And although I am hopeful, I am also aware that with the many ups and downs we’ve had, this could be just another up period before another down one, but even so it is a very very VERY welcome relief from the hellishness that this autumn has been. So we will thank God, keep praying and enjoying being able to breathe again for a while.




Sunday, 6 November 2011

Bunches of Cuteness

Normally I don't get too gushy about the whole 'I've got a baby girl after four boys' thing, not being a girly girl myself, but yesterday, when I was finally able to do THIS twenty years after I used to do it on my little sister, I'll admit I was pretty darn excited :)



Wednesday, 2 November 2011

Rocky Road

So we brought Scooby home on 17th October after a month in hospital. Then we took him back on the 19th. Then home again on the 21st. Then back in on the 24th. And home again on the 26th. You get the idea - things are not looking good. His seizures are out of control. We've gone from two or three three minute seizures a day to up to twelve seizures a day that are mostly lasting between ten and twenty minutes. The nature of the seizures have changed - they are more 'shallow' than they used to be in that he is stretched out instead of curled up and he can still talk throughout them, but they go on for what feels like forever and we have to give him his rescue medicine to try and make them stop, but it doesn't seem to be effective. As always, he is baffling all the experts. Each time he goes back in, a new plan is formed, medicine doses go up, but almost as soon as he's home it all starts again. He's currently on seven different medicines, plus the rescue ones they give him through a canular whenever we have to take him in.

Again, I don't want to be writing about this. So I will write about a happier occasion - Rocky's birthday. My baby boy was four on Tuesday. I really can't get over it - he is such a three year old in every way that he really doesn't suit being four. I am much more reluctant for him to grow up than any of the others, even Baby (who, btw, needs a new blog name as she is now 20 months which is officially past the baby stage) whose growing up just excites me rather than making me sentimental.

He, however, was ready to be four and to receive the presents that came with it, so I had to go with the flow. Unfortunately, Scooby had gone back into hospital with Richard the day before so we had to go with plan B (we haven't ever just made plan A for anything for a vey very long time) which was to spread out the festivities over several locations.

First I took the four children to McDonalds for breakfast, as is customary, for a gooey breakfast.



He opened a couple of presents there.


 Isn't that the best look of anticipation ever?


 The Tongue of Concentration... 



Ah, googly eye cards. You gotta love 'em.

The he came home and had bonus time on the Wii (boys are such simple creatures to please).

I'd asked him what he wanted for a special birthday dinner and instead of asking for Chinese food or home made pizzas like the others would have done, he simply wanted scrambled eggs, much to my relief as even I can manage that one.



In the afternoon we went to the hospital with the rest of the presents and got a huge surprise! The night before, Scooby had been really upset that he wouldn't be at home for his brother's birthday, but I told him the party would happen wherever he was, so he needed to get busy planning some ideas for it. I was thinking he would come up with some simple ideas, like Simon Says and musical statues, but he had roped the hospital staff into turning his room into a birthday grotto! There were lights hanging from the ceiling, disco balls shining around the room, music playing, a birthday banner on the wall, two birthday cakes and a card and a present.





We had a great time - we played Pass the Parcel and musical statues, opened his presents and had a birthday feast in a side room. 



The party planner, very pleased with himself.





 *UPDATE* Since I wrote this, we've been home, back in again, and home again (I couldn't get the photos to upload to the internet from my phone at the hospital!). He was in for four days this time, as his seizures are getting worse. He's dosed up to the max so we could bring him home for a little while, but we know he'll be going back tomorrow or the day after. He's now had his second dose of chemo but it will be another couple of months to wait until we know if it's working or not. Until then, we have to use whatever we can to keep him going.

Friday, 7 October 2011

Wiping It Clean

I'd noticed recently that quite often the hand towels in the bathroom were smeared with marks that quite clearly had not come from clean hands or faces - smears that looked like the remnants of bolognaise or chilli or hoi sin sauce.

So we have had several mother-to-boys talks about lazy hand and face washing. 'Wiping your dirty hands and face onto the towel,' I explain while they fidget and look around and wish I would be quiet because they were in the middle of something far more important like a game of Star Wars The Clone Wars, 'is NOT the same as washing your hands and face with soap and water. It will not clean away your germs properly and it makes the towels dirty so that makes more work for Mummy...' etc, etc.

They tolerate these little one-way conversations because they know that if they dare interrupt or look like they're not listening, I will then go back to the beginning and say the whole thing again, so the smart thing is just to let me say it once and get it over and done with. Once today, anyway - it will come as no surprise to any of us when I repeat the whole thing again tomorrow.

Then yesterday I saw it again - the brown smear. I went to throw it in the washbasket with a sigh when I suddenly stopped and took a closer look. And I realised I may have been wasting my time on the 'lazy face washing' thing.

So me and my three year old have had a sit down. We have discussed that no matter how lovely and soft and easier for little hands to hold a towel may be, it is not a suitable substitute for toilet paper.

And I may be using only white towels for a while, just so I can keep a better eye on things.

Tuesday, 4 October 2011

Changes


Gosh, I wish I could get on here to talk about more fun things – like what we are doing at school and trips out and other adventures, but I can’t seem to find the time between doing it all, and it seems more important to update on Scooby’s progress, so I’ll do that again for now and hopefully somewhere along the line I’ll find time for the rest!

The chemo went ahead last week. We’d got to the point where we feared it may not happen at all – he was so poorly that they kept having to put it off but eventually they’ve got him stable enough for his body to cope with it and he’s had the first dose. It’s only the first of six monthly doses so it will be a long time before we know whether it is effective or not, but it’s good to know we’ve got the first one under our belt. It’s a very mild dose of the drug so the side-effects will hopefully be very minimal (we haven’t seen any yet) and although there are some long-term possible health risks, compared to what we are seeing this brain disease do, it’s a chance worth taking.

We have also seen an improvement in his movement and shakiness. ‘Improvement’ is a relative term as he is much worse than he was two months ago, but better than he was two weeks ago. I don’t realise until I begin to tell people, ‘He raised his left arm to wave at the doctor this morning!’ or ‘He’s been able to grip a paintbrush while Richard guides his hand!’ and realise they are not excited like I am, but rather shocked, that I probably haven’t been conveying how bad the situation has been! Two weeks ago he could only lie in his bed and wrap his arms tightly around himself to try and stop his body from constantly spasming. He was on three types of anti-seizure drugs but the only relief from shaking was when he was asleep. He couldn’t stand up at all and only moved from his bed when we carried him to the toilet, after which he would usually have a seizure due to the activity. He could eat if we put the food in his mouth but would get too tired to finish a full meal and would only have short conversations before wanting to go back to sleep or tuning into the television so he could focus his attention on trying to stop the shaking. Since the beginning of August he hasn’t been able to walk up stairs and only managed a few steps at a time inside the house, but he got to the point where he couldn’t even bear any weight at all. Even being sat up on a chair for a couple of seconds without being held or strapped in wasn’t possible – a mixture of seizure activity and the dizziness caused by the drugs would send him pitching forward.

A few days ago though, they tried him on a new, stronger anti-seizure medication. I haven’t been with him for over a week as I started with a cold so I couldn’t swap with Richard due to risk of infection (he’s full of immune-suppressants so can’t fight any viruses), but Richard has reported  that he’s been sat up a lot more and shaking a lot less. He’s had a few days in a row without seizures and has begun to bear weight on his legs very briefly again. The drug has made him drowsy but that side-effect should wear off as his system gets used to it. So, if he continues to become more stable, he could be home in a couple of weeks. Tomorrow an occupational therapy team will come to our house to see what adaptations can be made for him. The doctors don’t want us to go back to carrying him up and down the stairs everyday and so they want to make sure we have these things in place before he comes home. With a four-storey town house with several split levels, I have no idea how they are going to manage this, but we will do whatever it takes to get the boy safely home. I don’t know how it will all work when he gets here – I am afraid of another experience like the one in the last post – but so far for every blow there has been a cushion (see this post) and I know this is how it will continue.

There’s been so much prayer for us all and some days I can palpably feel it holding me together. I would love it if we could also pray and thank God for two amazing people who are going way above and beyond their duty at the moment to get us the best care and fastest tests and results possible, and that is Dr Stephen Hughes and Dr Grace Vercello. Dr Hughes has been with us from the beginning and is the best communicator and passionate advocate of our case that we have seen (Richard has tried to kidnap him to bring him home with us a few times but apparently he has ‘other patients’ and an actual wife at home so we are obliged to go to where he is instead), and Dr Vercello came on the case a few weeks ago and has moved things along at an amazing rate. She is fiery and compassionate all at the same time and comes to see Scooby at the beginning and end of every shift she works, as well as the official visits with her team inbetween. As well as praying for wisdom for this case, it would be great if they could experience some of God’s blessing and closeness in their lives as a result of all this. There’s so much prayer going into our situation, I’d love it if some of it was heading their way as a result of people knowing their names!

Saturday, 24 September 2011

The Last Eight Days

Scooby came home late on Thursday night, ready to wake up at home on his birthday. As is tradition, we started the next morning with a birthday McDonalds breakfast. We started this a couple of years ago as Ace and Scooby's birthday is always during term-time, so they got a special treat before going to school. This time of course, we could extend that treat to 'No school at all!' as we took the day off home schooling. 

Ace had a fantastic birthday. McDonald's breakfast, no school, presents, playing games, Chinese for tea, movie night - but most important of all, I broke their usual half-hour-twice-a-week-on-the-Wii rule and let him play his new Lego Wii game for three hours. That is heaven for a techno-minded new eight year old.

Scooby's birthday was very different - he had all of the above (except the Wii game) but he also had six seizures, two long sleeps and uncontrollable shaking all day, topped with feeling really run down and miserable because of his current medication side effects. I spent most of the day holding him and trying to keep his shaky limbs calm. We abandoned our plans to go to my mum and dad's in the evening and stayed in. The next day he was the same. He couldn't be left alone at all, except when he was asleep.

Around tea time we put him in the pushchair and all went out for a walk with some friends. The other kids ran around and played on the park, but he just lay back in the pushchair and shook. We had just turned round to come home when I saw the tell-tale sign of his eyes rolling back in his head. He was having an absence seizure, which unlike his normal seizures, last for a long time and make him completely unresponsive. As we bent over to try and revive him, Richard realised he couldn't hear him breathing. We rang an ambulance immediately and our friends grabbed the other children and took them home. For a long time we could only hear tiny shallow breaths coming from his mouth so Richard ended up hauling him out of the chair and onto the grass and doing mouth-to-mouth on him. Eventually he gave a little cough from his chest and we heard a proper breath come out, and then the ambulance arrived. Once on the machine, they saw his oxygen levels were just 60%, and he stayed on oxygen for the rest of the evening.

So Scooby's birthday weekend was cut short. He stayed in our local hospital for two nights and was transferred back to Manchester on Monday morning. He stayed in the High Dependancy Unit for the first few days while they monitored him closely, and gave him stronger anti-seizure drugs and the high steroid dose we'd been waiting for. He is now on the regular ward, but we know that we are facing being here for a while now. After last weekend, we need to see him more stable before we can bring him home.  We are also looking at long term solutions for how he will manage at home. Physiotherapists have seen him in hospital and given him special equipment to help him get around, and they will visit our home to do the same.  Richard and I are taking it in turns between him and the others, doing three or four nights each, then swapping over. And Turtle, Ace, Rocky and Baby have just had a fantastic four days up at my uncle and auntie's farmhouse in the Lake District, so they are very pleased and blissfully unaware of the severity of the situation, as usual!

Thursday, 15 September 2011

Scooby and the Chemo


It’s usually difficult to write updates about Scooby’s condition because most of the time we are in limbo mode – as in, ‘he seems to be doing much better but it may be that his symptoms are being masked by steroids’, or ‘he’s much worse but he’s just started a new medication so he may be better in a few weeks.’

We are in another one of those times but I will attempt an update here (by the way, I’ve created a subject link along the bottom of this post so if you want to read the whole past history, click on ‘Scooby Syndrome’ and all the past posts will come up).

Since the end of March, Scooby’s been on a drug to suppress his immune system and there’s been some highs and lows but it doesn’t seem to have done the trick. He was gradually worsening (getting more tired and shaky) and so we knew things weren’t good, but then we had a scan in July that really surprised us – it showed that the dodgy material in the brain had faded, indicated it was all old activity, with nothing new. This really encouraged all of us and so the doctors wondered whether his shakiness was due to seizure activity – like a prolonged small scale seizure between the actual seizures, as a result of the damage already done to his brain. So they put him on a new anti-seizure drug but we had to wait for a while for results, because with all these kind of drugs, you have to start on a small dose and very gradually build up to the full dose over a period of weeks. Over the summer he got worse until his legs were shaking so badly he wasn’t able to walk at all. Occasionally he can make a few steps in a row but then his knees buckle and he’s on the floor. So we’ve been carrying him up and down stairs, and to and from the car, etc. We have a fantastic double in-line buggy designed to take his weight and carry Baby too, which was paid for by a local charity, so we’ve still been getting out and about over the summer, but with his lack of ability to move and his almost daily seizures it was clear things were not good. After being in and out of the local hospital in the last few weeks (one visit was with a prolonged absence seizure that lasted over half an hour which was pretty scary) we took him back to Manchester where they repeated the MRI scan. As expected, it was worse. Why the last one was better, we don’t know, but this one showed clear spreading of this disease or material that still doesn’t have a name.

So now we are going to move forward to the option that has been on the table since the beginning of this year, which is chemotherapy. This particular type will attack a few different areas of the body, so it stands more chance of working than anything else. Obviously, chemo is never pleasant, but this particular type and small quantity, carries much fewer side effects and long term consequences than chemo normally does. Having seen what this brain disease is doing to him it now seems much more of a risk worth taking than when it was first discussed.

He was due to start it this week, however the initial tests he had when he went in showed that his blood count was low, and as chemo lowers your blood count even more, he needs to have a healthy one to start with. They were going to give him a large intravenous dose of steroids to boost his bloods, but he keeps having high temperatures (a symptom we haven’t seen in a really long time!), so they think he must currently be fighting an infection, in which case they don’t want to give him more steroids which will knock out his immune system......

So the plan (as of a few hours ago) is that he comes home, has a couple more days to fight this cold, and goes back on Monday to see if the mega-steroid boost (not an accurate medical term) can be given then.

Bad news = the inevitable is prolonged, he’s not feeling well due to the various meds and his cold combined, and his mood swings are worse because of the side effects

Good news = he gets to spend his birthday at home tomorrow with his twin and the rest of us J

Thursday, 8 September 2011

The Lessons of Summer

How was your summer? We had good bits and bad bits. Well, only one bad bit really (unless you count the general bad bits that comes as part and parcel of motherhood – the brotherly tensions, the disciplining, the grouchy moments both from them and me, etc, but we are allowed to forget those bits and focus on the good bits because it is our parental right). Scooby is worse again and is becoming more and more limited in what he can do. I’ll do a separate post about that soon but this one is to tell you what our summer, with its many good bits and its big bad bit helped us to decide.

 It reminded me how much I love being with my children and how I prefer to be with them than ferrying them off to different places all the time.

It showed me that all five of them seem to flourish when given more time at home, balanced with meaningful activity and routine, including proper nap times, play times and brain-engaging times.

It removed from me the sick feeling I’ve had every morning for over a year when I woke up dreading a day full of overwhelming responsibility and chaotic to-ing and fro-ing and the resulting tantrums and stress.

It proved to me (possibly for the first time ever) that if I really set my mind to it, I CAN follow a set routine and fit far more into my day as a result AND enjoy it at the same time.

It looked a little bit like this (brotherly tensions, disciplining and grouchy moments both from them and me have been edited from this video):




It was fun, it was purposeful, it stretched our knowledge, character and imaginations, and we didn’t want it to end.

So we’ve decided it won’t.

Welcome to our new venture: The Scholes Academy of Adventure and Learning, open 365 days a year.

(We're still working on the name btw....)

Tuesday, 21 June 2011

Why EVERY One Of Us Needs Church

Perfect People

Never let 'em see you when you're breaking
Never let 'em see you when you fall
That's how we live and that's how we try
Tell the world you've got it all together

Never let them see what's underneath
Cover it up with a crooked smile
But it only lasts for a little while

There's no such thing as perfect people
There's no such thing as a perfect life
So come as you are, broken and scared
Lift up your heart and be amazed
And be changed by a perfect God

Suddenly it's like a weight is lifted
When you hear the words that you are loved
He knows where you are and where you've been
And you never have to go there again

There's no such thing as perfect people
There's no such thing as a perfect life
So come as you are, broken and scared
Lift up your heart and be amazed
And be changed by a perfect God

Who lived and died to give new life
To heal our imperfections
So look up and see out let grace be enough


There's no such thing as perfect people
There's no such thing as a perfect life

So come as you are, broken and scared
Lift up your heart and be amazed
And be changed by a perfect God

Be changed by a perfect God

Natalie Grant




Friday, 10 June 2011

Room Tidying for Boys 101

1. First, find something really interesting in your room that you never noticed before. It could be a book that is way too young for you, a sock that you suddenly realise can be stretched to far greater capacity than you ever imagined, a drawer handle that can be unscrewed and wedged between your mattress and the bed frame, or your blinds or curtains, which you always knew were there but have found an unexpected new use for, like swinging from the pole, wrapping the fabric around yourself like a Jedi knight, or pulling out the metal rods from inside the blinds and whipping your bedcovers with them.

2. When you hear footsteps on the stairs, immediately hide whatever you were playing with and dive to the mess on the floor with a slightly bemused look on your face as if you can't quite believe that all with all the hard work you've been doing, your room still looks a mess.

3. After escaping with a stern warning, resolve to finish the job faster and perform the all-encompassing clothes decluttering method. With a wide scoop of your arms, pull together as many clothes as you can see (don't worry if some books, papers or toys get caught in the mass, mum operates a great filtering facility before they enter the washing machine). Do not waste precious time checking if the clothes are dirty, or indeed, worn at all, as in the case of them falling out of the drawers while you were dragging out an item from the bottom of the clean pile the other day when getting dressed. Carry the hulking mass to the laundry basket and deposit a third directly inside, with the remaining two-thirds liberally scattered around the base of the basket. Note: in order to provide some variety and try and outwit your parents, every fourth or fifth time, simply throw the large pile into a clothes drawer instead and stuff with force until the drawer will just about half close.

4. With the time you have saved, you now resume #1 until caught out. If your parent is otherwise occupied and just calls up the stairs 'Have you finished yet?' the stock answer should be 'Not yet!' with an air of hopeful expectancy as if the completion of the task is imminent.

5. Take all your books and put them on the bookshelf. Don't worry about standing them up correctly or with the spines outward so you can see what they are, as you’re just going to tip off the whole lot next time you want a book anyway. Once you've got them all precariously balanced, turn away quickly so you cannot see them fall off, and are therefore innocent of any responsibility for them.

6. Using a similar scoop method as for the clothes, arm yourself with a mixed gathering of toys / rubbish / juice bottles / socks that you didn't catch in the first scoop, and put them in the nearest toy receptacle, irrespective of the label that may be on it.

7. Any remaining articles should now make a small enough group to be pushed under a set of drawers or wardrobe, or, if previously caught put by that tactic, use your imagination to come up with newer more imaginative hiding places such as down the side of your bed, inside your wardrobe or even under your bed covers, as it will be hours before you have to think about them again.

8. Having crawled inside your duvet cover three nights ago, it is now a tangled mess and beyond restoration by yourself, so plead ignorance, say you tried, and leave it a twisted knot somewhere on your bed. Perhaps put the pillow where it ought to be to pretend you made an effort.

9. Proudly announce you are finished so that can reap your reward of playing on the Wii or going to Grannie's house. Accept any praise or thanks that come your way gladly, because you may only have a few hours, or even minutes, in which to enjoy it.

10. When your various arty crafts are discovered, do NOT admit guilt until you have employed the following tactics: a)If you share a room or even have another sibling in the house, blame it on them. As unlikely as it seems that your fifteen month old sister was pulling clean paired socks from your top drawer and throwing them in the laundry basket, it's worth a shot. b) Pretend you just missed a spot and insist that the pile under your drawers or duvet must have been there for ages; you just hadn't noticed. c) You can just skip to this one if you want, but you may want to practice in the mirror first. When confronted, looked completely shocked and in disbelief over what has happened. Use phrases such as 'They were DEFINITELY still on the shelf when I left the room' and 'But I'm SURE I checked them all before I put them in' and 'What?!? How did THAT happen?' while scanning the room with your eyes as if suspecting goblins or other mythical creatures to be at loose within the house.


Note: the author does not accept responsibility for any punishment or withdrawal of privileges that may come as a direct response from the above advice. In fact, the author can almost guarantee some kind of penalty will result from this course of action, but from the experience of the author’s children, can testify that the compulsion to act in such a manner when asked to perform a simple task like tidying ones room will in fact overcome any fear of consequence, thus propelling you the reader (if you are a small boy) into the above scenario regardless of what past experience or present warning or future expectations may be internally trying to rationalise with you. So, in a nutshell: don’t come crying to me if you don’t get your turn on the Wii.

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!”’

‘Okay…’

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.’

‘Batman!’

Giggle giggle giggle.

‘Baby, say chicken.’

‘Batman!’

Giggle giggle giggle.

Baby, say mamma.’

‘Batman!’

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

Saturday, 23 April 2011

Good Friday Fun on the Farm

We spent yesterday in the Lake District at a friend’s farm. It’s the third time we’ve done it during a lambing season and the boys absolutely love it. As well as getting treated to a warm welcome and a huge feast (including rhubarb and raspberry crumble which was one of the best combinations EVER!), the farmer allows the boys to get stuck in with the animals. We went up on the fells to herd sheep into different fells, rescue small ones stuck between fences, and reunite lambs with their mothers.
Ace is in his element in environments like this. It’s about doing, not talking – using intuition and all the senses to engage, and learning with his hands. We brought a lamb down from the fells that had been rejected by its mother. He carried it all the way back himself and sat cuddling it at the bottom waiting for the farmer to return. He kept reading the number sprayed on its side and whispering to it; ‘One hundred and twenty three. I will remember your number and then I will know you.’ I think he’s logged it for our return next spring J
In the barn with the parentless lambs:



Scooby was keen too:



Turtle and Rocky were more cautious and kept their distance but they were all very keen on the idea of these:

Thankfully so was the farmer and unexpectedly gave Richard the key to the other one:

I don’t know who was more excited, him or the boys (although once they got up on the hills Scooby was clinging on for dear life screaming ‘This is the best day of my life! This is better than Christmas!!!’, so maybe actually the boys won):


Turtle got to ride up front with the farmer:


Me and Baby headed back to the farmhouse for a peaceful rest while they spun round the hills for forty five minutes.
They arrived back dirty, windswept and tired out – just as a day out for boys ought to make them.
And an extra highlight for me was this. As we were wandering, Ace spotted a piece of wood and ran excitedly to his brothers yelling, ‘I found it! I found Jesus’s cross!’
We turned to look and there he was with this:


For a boy who is short on words but big on actions, I love what he’s captured here, especially this ‘power’ shot J


Thankyou so much, our farm friends!

Thursday, 14 April 2011

Potential

I am a rubbish photographer. I often see potential amazing scenes that are in front of me every single day but I know that in trying to capture them I usually miss the moment by a mile and in trying to reproduce them once the moment has passed I just get cranky children giving me weird looks into the camera.
That’s motherhood I guess. A thousand amazing golden magical moments every day but a brain that’s been turned to mush and is incapable of holding any of them in its memory.
Anyway, these are from a while back (about 18 months ago) and are taken by an amazing photographer with an amazing camera and a tidy background (yes, the three things that I don’t have). Obviously they didn’t make the cut into wall photos but I kept them and saved under the name ‘potential’. I love the story they tell.


 ‘Okay, fantastic positioning. I’ll just adjust the light and the focus, then I need all of you to look at me and smile at the same time.’



‘No no, ignore your daddy making funny faces over there, look this way towards me. And smile.’


‘No really! I’m over here! Scooby, there’s nothing under there, leave the backdrop alone – this way please!’


‘No no! Now two of you are looking and smiling but Rocky has got up – go back! Back! Not you Ace! Come back out from the curtain!’


‘Aargh – it’s too late. We’ve lost the shot and the camera is about to be eaten....’


‘Oh well. I guess we'll go with one instead.’  J

Magic moments can come in so many different ways, but rarely what we are expecting.

Thursday, 7 April 2011

Siblings


I cannot imagine life without brothers and sisters. I know many people don’t have that luxury due to circumstances beyond their control, and I am so glad I am not one of them. I grew up in a family of four children, and was determined to have four children myself. But then I got greedy and added an extra.
I don’t know why I was so determined to have four. If you’d have seen me as a twelve year old, claiming that my brothers were the worst creatures on earth and that I couldn’t stand being around them, you’d have wondered why I was thinking of inflicting the same punishment on my own children in the future. Fighting over who controlled the remote, yelling at them for stepping into my private sanctuary  bedroom, kicking each other under the table for making irritating noises at meal times and trying to spread the blame for any trouble we found ourselves in – we must have driven our parents crazy. There were times of real genuine loathing in our teenage years where our prime aim in life seemed to be to either gain supremacy over each other (through verbal arguments or worse) or just make sure we avoided each other like the plague. I honestly started a weekly countdown in my head in the year before my older brother left to go to university.
Despite all the aggravation though, there was something about the security of having those people alongside me in life, sharing experiences and learning to navigate  a path with them already on it. Between the conflicts, there were (sometimes few and far between) moments of comradeship and understanding that made it all worth it. I can’t say I ever remember my older brother specifically rescuing me at any point during our school years, but just having someone always in the year ahead of me meant that I never had any fear of what was coming up, even though I was really really shy when I was little. I think I just assumed if he was already there, then it would be okay, and if there was anything to warn me about, he would let me know first. (In fact, I do remember a late night talk now just before I started high school where I was filled in with some general lingo and innuendo that meant I wouldn’t be exposed to any ridicule by not knowing it. I don’t know what cost you bought all that information at, but you saved me the same grief by passing it all on for free. Thanks bruv.)
I can’t imagine who I would be now without those experiences. I think I may well have grown up with an unrealistic view of who I am. There’s nothing like siblings to bring out the worst in you and make you face those secret, unpleasant places that can so easily be hidden to the rest of the world. Without that, how would you grow as a person and understand your need for forgiveness and redemption?
As we have grown into adulthood, our relationships have changed hugely. We are now really close friends and allies. We have challenged each other, helped each other and even lived with each other temporarily without any fighting between us!
And there have been several times when I honestly think we have saved each others’ futures. There are at least two occasions in the last few years where one of us was teetering on the brink of making choices that would have caused irreparable damage, and at the point of crisis, it was siblings who were there in the right place at the right time to tip the scales back. God used that unique brother-sister relationship of equality, common history and knowing each other inside out which meant we could hear and grasp the heartbreaking agony of making those decisions but still speak the truth that needed to be said.
Of course there have been other times when we have interfered and got it really wrong, but we’re allowed to do that with each other too!
I hope and pray I can foster some of the same relationships in my own children and see that irreplaceable bond between them in their adult lives too. I hope it will make my own times of watching the sibling rivalry more bearable. I may need to remind myself of the necessity of it a few more times before I’m done.
We have walked together, cried together and celebrated together and I think we will continue to do so for many years to come.