Wednesday, 27 June 2012

One of THOSE days...


No-one in our house was injured or suffered loss or trauma. I should not be complaining. A tiny boy was killed in a gas explosion in Northern England yesterday. Syria is in meltdown and its people are enduring terrible things. The world is full of grief.

So I have to get some perspective and be thankful. However... it was still a SOD of a day.

   Tigs was in one of his pain in the backside most delightful moods in the morning. He was not going to do what  I wanted him to do. He was going to do the opposite. Even if he didn't want to do it.. Sadly things degenerated into a battle scene, with a lot of screaming, where I ended up dressing washing tuthbri-ing combing creaming everything-ing him. This is Mr Independant who could dress himself at 2, and hates being 'done for'. It did not go down well. As a result we were seriously late leaving for school. Meanwhile I'd told Pup to set off for school on his own. He's quite capable of getting there safely. However he dawdled and dallied, took 5 minutes to decide to cross a road, and ended up getting to school after Tigs and I did.

SO: Both boys late for school. Tigs burst into tears as soon as he saw his teaching assistant, and had to be taken aside to be dried out before he could join his class. I went home and burst into tears too - sadly no-one there to mop me up. Cuddling the Ginger menace helped.

  Our neighbours have gone away for a few days and were expecting a 'large parcel'. They warned us before they went, but said that they had asked for delivery to be delayed until next week. It came anyway. Not one but two VERY large parcels. Himself managed to get them into their garage in the evening as we could not use our hallway meanwhile.

  My Toshiba portable hard drive died on me, it was my main place for storing all my photos. I can recover most of them, as they are stored in other places too, but there are a lot I had photo edited that are lost, and some personal files too. And it was the only place that I had organised my pictures, so hours of work to do again. I could have cried.

  I went into town and picked up my new glasses. I can see really well with them but they are very uncomfortable, and will have to go back. Then I had to do a massive supermarket shop as we had run out of everything (comes of going away on holiday) Supermarket shops are my pet hate, as time wasters they score about 12 out of  10 for awfulness (thank God for Ocado!)

  The pollen count here is about a zillion parts per million. We have a couple of wild areas in the garden with a lot of long grass, which I decided to tackle. BIG mistake. Had to retreat into the house sneezing and with horribly itching eyes, didn't dare open the windows for the rest of the day.

  And... it rained on the washing, and the tent put up to dry in the garden.

  However, whinge over. Today has been much better. We've made a few changes to how we manage Tigs, we had a happier morning I've sorted some of my photos. Kids did OK at school - no-one got sent to the head teacher, no-one got sat in the 'thinking corner'. Hoping life is on the up.

Sunday, 24 June 2012

We've been on holiday

   We were camping in the Lake District. We had some glorious sunshine, we climbed a mountain, rode a train, paddled in the sea, tried scrambling on rocks, both boys bottled out of abseiling.

We've let Pup do stuff that probably no kid with CF should do:

this was a pool at our campsite

We've let Tigs do stuff that probably no kid should be allowed to do.

yes, he landed safely... and did it again... and again.

We haven't lost all our commonsense however. The weather forecast at 6pm on Thursday night was dire. We were debating whether to drive home that night, but decided it was safer to stick it out and go home on Friday morning (instead of Saturday) I am so glad we did. We woke to pouring rain on Friday morning, and all got soaked getting the tent down. By the time we left the roads were quite scary, we had to drive first over small mountain roads that had become virtually streams. Then the motorway was pretty bad, heavy traffic, heavy rain, spray everywhere. NOT nice. It took 3 hours more than usual. However I'm glad we left when we did, because there was severe flooding in the Lakes that day; I think we just got out in time.  No-one was killed in the floods thankfully, but there were a lot of homes and other buildings damaged. 

Friday, 15 June 2012

A bit of a nothing blog

Not got much to say for myself at the moment, so probably shouldn't be saying much!

Our boys behaviours are challenging to say the least..

I'm overtired.

Monocat has had a lot of her teeth removed and is sulking. I think she'll be happer soon, her teeth were  really bad.

The Ginge excelled himself today, he brought two frogs into the house before breakfast, later the neighbours were shocked to found him in their bedroom, he must have snuck into the house behind their backs.

I don't have much positive to blog about work... but I don't blog about my job. BAD idea. However I would like to feel a little more positive about it.  :-(

Any good stuff? Well, Pup is learning to trot! 

 I've been practicing my drawing.

And The Ginge is NOT at all impressed.

Thursday, 7 June 2012

Adopting part 1

This is one I've been meaning to write for ages. 

  Every family has its own story. Each adoption story is different. I've been reading a few adoption blogs recently, and some are helping me gain insight into my boys, and why they are.... they way they are. 
I'll have to begin by saying that I think our attitude is not quite the same as that of many adoptive parents. The fact that the kids are adopted isn't something we focus on. We are always aware of it obviously, but our older sons medical condition has always dominated our experience of him; and that is the 'lens' through which we tended to view him from the beginning. When our second son arrived we were focusing on having a 'normal' child. Once the ordeal of adopting was over the adoption bit sometimes seems incidental. Of course it's not. It's central to them, and vitally important.

  Where to start? I find I don't want to write about the infertility issues, the years of waiting, of hoping. The highs and lows, the exciting meeting with social workers, to discuss possible children the phone calls to say we'd not been chosen. The good and bad experiences with many social service departments.
  I'll start with a prayer, in January 2005. I was losing hope that we'd ever get a child. We'd even been linked in 2004 with a little boy and lost him due to changes in his family situation. We were worn out with it all after a couple of years of waiting. So in weary desperation I prayed that we'd hear about the right child within the next week....
About 3 days later we got a phone call from our social worker telling us about a tiny boy just over 15 months old. We'd seen him in 'Be My Parent' but not enquired about him, because we'd given up trying for young children, we wanted preschoolers but were beginning to resign ourselves to accepting older kids. But this boy was a little different. He had Cystic Fibrosis. I knew a little about this condition from my nursing experience, Himself knew barely anything. We were told his life expectancy could be 30 years or more, but nothing was certain. He looked gorgeous, and seemed otherwise ok with no other issues apart from slight developmental delays which everyone said were due to being born prem and having so much illness in his first year of life. We thought, we prayed and we said yes. We discovered that no other families were seeking to adopt him. So we went into this with a great deal  of hope.

  Fast forward. We didn't get to meet him until June. Sometimes the adoption system in this country breaks your heart. Meetings, paperwork, e-mails, more meetings,the matching panel,  approval. A little boy waiting for a Mum and Dad. A foster family caring for a sick and needy little boy on top of their own family and a selection of other foster kids.

  Then there he was, suddenly centre frame. Our Pup. The person it was all about. Our new and terrifying responsibility. No longer a child on paper but a real live person. He was 20 months old, just walking, he could say 'hello' and 'car'. He was full of smiles, happy to meet new people,  gorgeous and friendly. That should have set off some alarm bells, but everyone kept reassuring us that he was normal. Just an extrovert. Well that is true. He IS an extrovert...
   We took a week to get to know him in his foster home, spending as much time with him as we could, while staying in a cottage nearby. We met his birth mum. We took him out, we learned about his routines, his medication, his physiotherapy - oh and all the normal toddler stuff. Then we had to go home without him. Two days later his foster carers arrived with  a carful of toys clothes, highchair; and one tiny boy. Our son. Two days later they left us alone with him, our new son.

 Most  of those first few weeks is a blur. We were so tired, we didn't know him , he didn't know us. We had to get used to living together, he had to adjust to a household totally different to what he was used to. No other kids, no dogs, instead 2 cats. People spoke with a funny accent. There were dozens of new people to meet. It was supposed to be a precious time of learning about each other. It was exhausting for us. We had so much to learn about caring for a child with Cystic Fibrosis. Just adapting to having a toddler in the house was hard enough. His nappies - Himself says that after changing a CF nappy no nappy will ever hold fears for him again! Doctors appointments, physiotherapists, dietitians, more social workers. Meeting family. 
  It was hard but I don't think  that my memory underestimates the fun, the excitement of seeing him settle in, of watching him adapt to our household, and become part of our extended family. of seeing him learn and achieve new things, Some bits were - and still are - very tough. He doesn't do food, and getting him eating was a massive battle. He came to us subsisting mainly on milk.

  I cannot imagine life without him now, and am so thankful we have the privilege of caring for this very strong resilient little boy, who has been through so much more than most kids his age. Yes, he still has big issues, but I am always amazed that despite everything he manages to keep going and keep positive.

Wednesday, 6 June 2012


   Pup is in pain tonight. He does get stomach pains, and often we are at a loss to help. This is one of those times. It's been sore for a couple of days. I've done the abdominal massage, I've done the calpol. He's had some very strong laxatives to clear him out (with good effect yesterday!). We are just praying it's not a serious blockage. When he was four he had emergency surgery for a blockage that put his bowel into spasm and he got an intussuseption when the bowel telescopes in on itself. It is less likely to happen again now he's older, but he does have DIOS, a CF related digestive problem.

  Often we struggle to know how bad his stomach pain is, and sometime whether it is genuine or not. He tends to complain of it more  when he is nervous (fair enough), but also when he has to do things he doesn't want to do - like eat. Food is NOT his thing. But tonight he does seem genuinely to be in severe pain, he calls it a 'spiky' pain and he hates it. We've sent him to bed with a hymnbook. Sounds silly? Singing always helps him feel better, it relaxes him and probably relaxes his stomach muscles too. I can hear 'Once in Royal David's city' coming from his room, with occasional bursts of some of the Jubilee songs he's learning in choir, or 'Easy Rider'. Or 'Heads shoulders knees and toes.' He enjoys a wide range of music. If he gets too sore he'll be down to tell us; but with luck he'll go off to sleep soon, that's the best thing for him!

Things were a lot happier this morning!

Saturday, 2 June 2012

Her Madge

In our house Her Madge is the queen cat, She Who Ought To Be Obeyed. (In her opinion at least)

   But this is not about the most important cat in the world, it's about the real Queen, who has been doing the job for 60 years and for whom I have a great admiration. I'm not saying I have a great admiration for Royalty itself, I have very mixed feelings about that institution, but the woman who represents Royalty in this country; she is quite something. I will struggle to find something original to say about her; her dedication, tact, care and devotion to her job, even in her mid eighties her unflagging zeal and commitment. Yes she has got things wrong, but she has got so many things right, and she has such a clear understanding of her role.

  She is going to be a very hard act to follow.

 So we will be celebrating the Jubilee this weekend, because I believe that 'Our Liz' has given a great deal to this country and she deserves a round of applause. And I know it is not at all fashionable to say  but I do love my country, occasionally I'm even quite proud of it. More often I'm embarrassed by it - but of couse being biassed I still think we're best, despite the politicans, the football hooligans and the binge culture.

So just to make sure I offend the few people who I haven't already upset, here is a tongue in cheek view of the world from an English point of view, for the rest of you: 

Another stand down.

For the second week running we've had a phone call from the riding school, to say that Pup's session is cancelled, just as we are about to walk out the door.
I am not complaining about this. It is disappointing for Pup, BUT the Riding for the Disabled organisation is run by an incredibly dedicated bunch of volunteers. A lot of them are horse loving teenage girls. Last week was exam week for a lot of them. You can imagine their mums: " No you can't go riding today, You've got to revise!" This week is bank holiday and school half term - they can't be expected to devote their whole lives to RDA. It is doing such good things for Pup. We are so grateful for all of those volunteers.

Thank you RDA!!