2 Cor 12v9

Monday, 28 March 2011

A Step Forward

Just a quick update – Scooby and I went down to Manchester last week for a few days. Since his time at Great Ormond Street, both teams of doctors have put their expertise together and been able to rule out many possibilities, narrowing it back down to what they thought in the first place – an immune system dysfunction. They think they can identify white blood cells in the biopsy from the brain, which would point towards this too. They are still unable to diagnose what it is or what has caused it, as he is lacking many of the markers that normally come with immunity problems, but they don’t want to keep him on the steroids any longer and they feel they finally have enough to go on, at least to make another step anyway.
So he is now having treatment that directly affects his immune system. Last week he was put on an infusion of methylprednisolone which is like a mega steroid dose, to wipe out those cells entirely. He is on a new daily drug (azathioprine) which will keep his immune system suppressed and he is likely to stay on this for a year or more. As we had been told to expect that the next step would be trying him on a chemotherapy drug, we are so grateful that they have found something much less toxic that may do the same job with many less side effects!
As with everything, this is an experiment, but we hope that it will prove to be the answer for both our situation and any other family that may go through something similar in the future. As much as I love the steroids for keeping my boy functioning and well, I can’t wait to get to the stage where he is no longer fuelled by them and will be able to cope with life a little better again.

Psalm 71:14



I am coerced into taking pictures of Scooby (and Mr Grumpy) at any kind of monument or sculpture that he sees. This one is outside the train station in Manchester. He wants another new picture of himself every time we walk past it.

Sunday, 20 March 2011

A Whale of a Time

This morning the boys decided they all had babies to look after and brought them down for me to look at them.
These are Scooby’s and Turtle’s babies (apparently the pants represent nappies too):

 
No wonder Mr Grumpy is so grumpy.

Here is Rocky with his:


And after a lot of clunking and crashing down the stairs, Ace appeared with his 'baby':


That boy, he can always be relied on to think outside of the box.

Thursday, 17 March 2011

Blows and Cushions



I said I would write a post about the positive aspects of the last year – here it is.
It feels weird in a way to do it, because we are going through some unpleasant stuff and I never know whether in emphasising the positives, it comes across that we are being trivial or flippant about a serious (and as yet unresolved) situation. And it’s not me or Richard that are suffering the worst of it, it’s Scooby himself, and that seems extremely unfair to say ‘Never mind, but isn’t it good that...’
But things are not black and white and while I cannot understand why all this has happened in the first place, I only know that it is happening and God in His sovereignty has brought so much good out of a bad situation. The only way I can describe what it feels like is to keep receiving blows but every time – and I mean every time – landing on something soft. As soon as you think you’re about to be floored good and proper, a cushion appears as if from nowhere and instead of a harsh impact, there is an unexpectedly soft landing.
These are snippets and generalisations but I hope they get across how faithful and amazing God is in any and every situation:
1.       Scooby’s overall health. From the very beginning, doctors have been baffled at the inconsistency between Scooby’s scans and his outward health. We get told most visits that we should have a very poorly-looking child – and most of the time, we don’t J In the beginning of this leg of the journey, when we had doctors coming to his bedside everyday with more bad news about what was going on in his body, this was the cushion. I’d hear the news, look at the boy bouncing around next to me, and inwardly thank God that nothing seemed as bad as it ought to be. This carried us so much in the first month, it was incredible. Even now, we are still being told that his shakiness and coordination should be much worse than it is, and that his brain must be working really fast all the time to make the necessary adaptations to control the changes going on in there. I agree, but think there's something else going on in there too ;)

2.       Time with my boy. I love spending time with all my children, but right from the start, Scooby seems to have been the one who ‘needed’ that one on one contact all the time. The others have always been more self-sufficient in imaginative play or construction, but Scooby just loves people. He used to beg and beg for me to sit and play board games with him all the time. Between jobs to be done, and school, and having a toddler in the house, I hardly ever managed to do that with him. But through what has happened, we have had loads of time together, doing things we both love. He is so like me in many ways and we have loved reading books together, doing puzzles and workbooks and playing board games (we are both very cool, I know). One of the main highlights of lengthy hospital stays has been setting up Monopoly games that have lasted days without fear of small hands to destroy it. One night we stayed up till 11pm finishing a game. He said that was his best day ever J We are never bored in hospital. We are weird, but we’re weird together.

3.       Rest for me in pregnancy. I was in so much agony with my fourth (and final!) pregnancy. I had a condition called SPD which meant that all the ligaments around my pelvis softened when I was pregnant. This was painful but manageable in the previous pregnancies, but unbelievable in this one. From four months, I’d had to use crutches and from seven months, I couldn’t walk at all. I was bedridden and had to crawl around the house if I needed to move. The first two weeks of last year I had spent feeling really sorry for myself and saying to God, ‘I can’t do this anymore! You have to intervene! I can’t look after a toddler all day or the other boys when they come home from school and I’m so scared I’m going to do myself permanent damage if I have to keep going up and down the stairs!’ Well, it was an unusual answer to that prayer, but little did I realise that for the last month of the pregnancy, I would get the rest I desperately needed, lying on a parent’s bed alongside my child in Manchester Children’s Hospital! The staff were fantastic with me and wheeled me to other departments whenever we needed to go for scans and xrays, and some would bring me food or a cup of tea if I was having a particularly sore day. When we came out after four weeks, we were given an appointment almost straight away at the maternity unit in our local hospital, and they induced me a few days later. Thanks to family and friends helping out, I was able to rest after Baby’s birth and was walking without the crutches by the time she was six weeks old. Without this intervention, I honestly don’t know how bad my back and pelvis would have been now and whether I would have fully recovered like I have.

4.       Permission to focus on the children. Lots of people have asked if it’s been difficult having a new baby while having everything else going on. In some ways it has, but mainly I think that it has actually given me more opportunity to focus on family than ever before. Even though Richard took Scooby straight back into hospital the day I got home with Baby, and they were gone for a month, I had great support for those weeks. My amazing sister moved in and travelled nearly an hour there and back to work so she could be there for me in the mornings and evenings to look after us all. A neighbour and a friend managed the school runs, and a group of people even got together to pay for me to a cleaner for one morning a week. For ten weeks it was like having a tracksuited, chain-smoking angel with a pinny on appearing at my door every Tuesday to whirl around my house and blitz every surface. It was amazing. Once I was back to health, and ever since, I have pretty much let everything else go apart from looking after the house and the family. Most of my days consist of to-ing and fro-ing, because Rocky has half-days at preschool, Scooby has just an hour or two at school everyday, and Turtle and Ace have regular school hours. Some weeks are broken up with hospital appointments, other with admissions that last several days. We’ve had to cancel invitations to parties and family events because we don’t want to be further than ten minutes away from Scooby in case he has a seizure (although finding a babysitter for five children is nearly impossible anyway, so it hasn’t made that much difference!). We’ve had to drop out of church events at the last minute depending on how he’s doing. But all this has meant that the children are my focus, and there is no guilt attached to saying ‘no’ to other things now. I know it’s a season and it won’t last forever, so I’m just enjoying that extra time I have to roll around with them and stay at home while the rest of the world rushes by. And, as all health scares do, it’s given me an extra appreciation of all the time we spend together and a determination to capture as many memories as possible. It’s made me focus on fun!

5.       Footprints in the sand. In the busyness and the chaos, there has been a peace like I’ve never known before. It’s so very true what they say about God carrying people through the storms of life. There have been many times in my walk where (rightly or wrongly) I have felt like I’ve been battling or pushing forward towards something, but last year has been very different to that. It’s been about clinging. Not in a desperate way, like off the side of a ship in a storm, but like a baby being carried by its mother. It feels like it’s clinging in order to stay up, but in reality it is being carried completely safely the whole way. God has been so real to me, and all the things I ever knew about Him are so much clearer than ever before. Words of old hymns come back to me as I fold laundry and make me feel restored and full of hope. Waiting times, that should be inconvenient, have turned into my secret quiet times, reading my bible in the car outside school while the babies are asleep in the back. Whenever I hit a wall and feel like I can’t go on (which is, on average, about once a day), if I take the time to look in the Word (and I don’t always because I’m slow and inconsistent like every other human), He just jumps off the page to me and everything makes sense again. I’ve had some really tough and distant-feeling times in my journey with God before, but this is not one of those times. Right now, He is definitely making that side of stuff really easy for me! Thankyou God.

6.       Being a part of something bigger. When Scooby was at his worst, this time last year, some amazing people began spreading the word on our behalf. Before we knew it, people everywhere were praying for our family and our boy. We were getting messages from places like Chile and Australia and South Africa and Germany and many many more, as well as churches all over this country, to say that they were praying for us. Some were rearranging their prayer meetings for us. A group was set up on Facebook for a day of prayer and fasting for him. Hundreds of people joined, including many we had never met. Friends who didn’t even believe in prayer started praying! Shortly after this, Scooby made a massive turn for the better and his health has never spiralled down like that again (thankyou God!). But as well as that, something else amazing happened as a result. People, including me, began to have their faith restored not just in God, but in the church as a global community. It was like seeing the Kingdom of God in action, and it awakened an excitement for prayer and unity that had been forgotten by many people. We are still receiving messages all the time from individuals and churches to say they are praying for us, and I am absolutely convinced that this is why we are experiencing the closeness of God that we are. I know I ought to have crashed and burned a long time ago, but the prayers of the righteous are powerful and effective!

7.       Scooby and Jesus. Scooby has always been the sort of child that is amazingly enthusiastic and compliant most of the time, but occasionally gets himself worked up to a point where he cannot control his temper. Unfortunately, the amazingly fantastic medicines that have kept our boy going and stopped him having continual seizures do have the combined side-effects of producing mood swings. Oh boy. Even his spectacular toddler tantrums couldn’t compare to him as a seven-year-old boy deciding that he would rather lie on a pavement in the rain than walk to his front door a few metres away because he thinks his mum (who is carrying a baby and a bag of shopping) can’t do anything about it. This has definitely been one of the blows and has been extremely hard to deal with because it is not very clear where the chemical imbalance ends and the stubborn child who needs boundaries begins. It has tested my parenting skills to the limit and is not fun when either one of us is slightly tired or overstretched. One particularly harsh time, as he was raging and storming in his bedroom, slamming the door over and over again and screaming at the top of his lungs, something in me snapped and I ran up to him shaking, ready to do anything to make him stop. But God took that five second sprint up the stairs to do something in me, and when I opened that door I lost my rage against him and just began praying over what was happening inside him. I didn’t shout or yell, I just prayed as I stood next to his little furious body and asked for peace, joy, calmness, love and gentleness in him. He stopped raging and became still and we crawled into bed together. I continued to pray in whispers over him, against the fear, the anger, the confusion and the anxiety that seemed to keep coming over him. And then, finally, we talked. He really wanted to be free of this uncontrollable feeling that kept coming over him. He hadn’t been able to acknowledge it up till that point but suddenly he could see it for what it was. We talked about Jesus and the Holy Spirit and having a changed heart. We talked about how God was bigger than any feeling or situation. He asked me to keep praying for him and to intervene with prayer whenever he started to get out of control. That was months ago, and since that time, he has prayed every day for peace and joy in his heart. He prays it for the rest of us too, especially if he thinks we particularly need it :S He still has tantrums sometimes (the lying down in the rain thing was just yesterday), but they are shorter lived and usually have a happy conclusion (unlike the long stand-offs we used to have where neither of us would back down).
There are many more. Many many many more, but these are the biggest ones, and the ones I can remember right now (and I feel like I've just skimmed through them without giving full justice to each aspect at all). As well as those, there are lots of individual incidents, like people being there at the right moment when he’s needed to be rushed into hospital; and having big travelling and food expenses to pay out for a hospital visit, then receiving a cheque in the post to cover the same amount of money. Friends who have come to visit at the right time, and the other kids being unbelievably helpful when we’ve hit a point of crisis. There are so many. We are so blessed.
And I am glad that this post is so much longer than the negatives one. It deserves to be.

Sunday, 13 March 2011

My Inspiration

My children really are so inspirational to me.
I spend so much of my day being overwhelmed by my responsibilities that I find it difficult to prioritise and know exactly what to do next. When every room is filled with clutter and unfinished jobs, which one should I do first? And where in the room do I start?
Thankfully my little team of helpers are always at hand to help me think clearly. I may put off mopping the kitchen floor for days, but suddenly when my three-year-old climbs into the fridge and tips part of a smoothie carton into a cup and the rest onto the floor, the decision becomes clear – I must get that floor cleaned NOW.
I spend lots of time folding and ironing their clothes but sometimes I keep getting distracted before I can actually put it away. It can sit in a pile for days until a particularly boisterious game of pirates means it gets toppled over and trampled on. Somehow the sight of all that clean laundry besmirched on the floor means I have no problem finding the time to refold it all and get it away in the right drawers, no matter how loud the baby cries or how near to tea time it is.
I often ask myself questions like ‘I wonder if it’s essential to spend time cleaning the toilet every single day? Surely that takes up lots of time doing the same thing over and over again when there are so many other jobs to do?’ Then I happen to go into the bathroom at the same time as one of my sons is using the toilet. And I realise that time cleaning the receptacle is definitely not wasted time. In fact, I should be cleaning it more times a day. And the floor, walls and everything else in a few metres’ radius around the toilet too.
You see how it works? What a blessing they are to a clouded, indecisive mind such as my own.


My children really are the reason I get up every morning.
Because I dread to think what they’d get up to if I didn’t.

Tuesday, 8 March 2011

What Not To Eat: A Repost

Monday 27th October 2008

How to make Stewed Mother

You will need:
October 2 129
Dried-up Horlicks
Golden syrup
Filter coffee
Vitamin pills (yes, my heart stopped at the sight of those too)
Strawberry Nesquik
Chicken Cup-a-soup



October 2 128
Crackers
Chocolate sauce



October 2 127
Strawberry sauce
Four individual sachets of sugar
A potato peeler (NOTE: not a knife, because everybody knows Mum goes ballistic at the sight of you using a knife. So a potato peeler is sooo much better...)



Stir it together until it looks like this:
October 2 132

Then make sure you track through as much of it as possible so the mixture can be evenly distributed throughout the house:
October 2 131

(Thankfully the recipe ends here - I caught them before they worked out how to turn the oven on, or before they ate any of it. Although in hindsight, maybe that was a bad thing - maybe it would have cured them from ever stepping foot in the kitchen again...)

Saturday, 5 March 2011

Happy Belated Birthday Baby Girl


My baby was one last Friday. I am so excited – this next year of development is just the best. Walking, talking, laughing, playing, it all seems to kick in in the second year of life. I love the little tiny cuddly baby stage (come to think of it, I haven’t yet found a stage I don’t like) but I just can’t wait till the next bit to discover her personality and be able to interact with her more. I really wasn’t like this with Rocky at all. I just wanted him to stay as a little baby forever and hated the thought of him growing up. With Baby, I feel like I did the first time round – enjoying the current stage but still impatient to see what will come next. Maybe it’s because I feel like I’ve been immersed back in the baby stage for too long now. With Rocky I think I was so amazed at remembering how much easier it was to have one baby at a time!
Or maybe because I’m intrigued about what it’s like to live with a little girl. I find it so weird after being surrounded by boys for so long to even entertain what a girl (as opposed to a baby as she is now) will be like in the house. Contrary to popular belief, a girl was not my aim. Lots of people will assume that we had so many children because we were trying for one – nope, we’re just that crazy! I wasn’t opposed to the idea of having a girl, but I don’t think I was ready for it either. When we suddenly went from having one boy to three boys, I firmly put the idea of girly things out of my head. I automatically bypassed all the girly aisles in the clothes shops and had gotten used to choosing toys and activities based on their sturdiness and easiness to clear up afterwards rather than their attractiveness and creative bias. It didn’t particularly bother me, because I was never a very girly girl myself. I did have one Barbie (decapitated hours after my birthday party by one of my brothers) and a dolls house that my granddad made for me (which had all its window boxes pulled off within a week by my other brother) but in general I liked more imaginative and adventurous things than fairytale romance. I loved Enid Blyton books (except for the girls’ schools ones) and hated wearing dresses.
So it really surprised me when I got home with my new bundle of joy in her yellow unisex babygro (who had been sleeping an NHS blue blanket for two days) and stepped into a world of pink. Richard had been gradually receiving cards at the house and setting them on the mantelpiece, then the sideboard, then the table – and they were all pink! My sister-in-law had brought her moses basket all freshly cleaned and set up in the corner. It was pink. There was a pile of presents waiting to be opened. They were all wrapped in pink. When I opened them, they were full of pink. Pink babygros, pink blankets, pink teddies, pink dresses! It still didn’t really hit me because it was all so familiar. It was my mum that brought it home. She arrived with more pink packages full of pink things. And then she handed me a little bag containing a heavy box. I looked inside and there was a little box set of four books. These were new ones, but copies of books that I had read as a child. Not only that, but my mum had read them as a child too. They were the stories of Milly Molly Mandy, written between the 1920s and the 1960s and were tales of picnics and thatched roofs and grandparents that lived in the family home and friends who lived up the road in the village and even – these were my favourite bits – contained the maps of where all the characters lived. I can’t even remember what happened in the stories or what made me love them so much to begin with, but when she presented me with this blast from my past, I promptly burst into tears and wailed ‘I’ve got a GIRRRL!’
           
My second epiphany came when I went to Next when she was about six weeks old. I’ll admit that I have for a long time harboured an assumed distaste towards all things girly. From my surreptitious glances towards the girls section previously, there seemed to be so much more plasticky, naff stuff around for girls than for boys, and it was all covered with glitter and fluff and the word ‘princess’. I had a couple of outfits that we’d been given double of, so I thought I would go and do straight exchanges for the next size up and then leave the shop. Instead I found myself, once having crossed over the unseen divide from the boys' side of the floor (two racks) to the girls’ side (entire rest of shop), in a complete state of shock. I didn’t hate what I saw at all. I loved it. There were so many more things to choose from! There were dresses and skirts and leggings and boots and tops with ready made layers built in – and tights! (I have discovered an unexpected love for tights with the way they frame those chubby little legs and, unlike all other footwear on pre-walkers, they actually don’t fall off). I stood and stared at it all for so long that a sales assistance came over to see if I was okay. I whispered that I was in a parallel universe and was having an out of body experience. Or something like that. Eventually, I managed to narrow my choices down from ‘the whole shop’ to just a few items that only came to three times the price of the items I went in with. When I rang Richard and told him what had happened, I don’t think he could believe that his previously tight-fisted, shopping-hating wife was falling to pieces over a few pieces of pink patchwork fabric.
I imagine that these things are just the first in a long list of new experiences I will come across as she gets older. I’m thankful that I get a long period of adjustment – so far the only difference at this rolly polly tactile stage is that she is, as the books predict, more interested in faces than her brothers were at the same age, which seems to mean that I have to keep her fingernails extremely short as she loves to grab handfuls of anybody’s cheek, lip or hair if they come too close.  This I can deal with, but the idea of the future – of the added emotional reactions, self-analysis and social pressures that seem to come as part and parcel of having a girl – well quite frankly, that side of stuff terrifies me. I think that is the reason I have always been so much more comfortable with having boys. They seemed to be little bundles of life, energy and determination that come into this world just waiting to be given a direction and fuel to keep themselves going and comfort inbetween crashes. Girls – they seem to me to be a whole different type of creature, needing much more detail and consolation than that. And – here’s the bit that scares me the most – when she gets older, am I going to look at her and see myself reflected in her more than I do in the boys? Will it be like watching a piece of me walking around, making decisions and going her own way? How do you let that happen?
And - oh my goodness - what if she actually chooses to like High School Musical and wants me to watch it with her? *boak*
What was I saying about being impatient for her to grow up? I think I'm pretty happy where she is right now actually, encased in those lovely little chub-enhancing tights.
Happy birthday Baby Girl  xx