Wednesday 29 September 2010

Some questions ...

What do you do when the people looking after your diabetic child won't take juice with them to the park?
What do you do when they also won't take their mobile phone?
What do you do if you leave these people with your child to go to work for four hours, leaving lunch ready to heat and a snack for mid-morning too, only to call at 2pm to hear that your child has been allowed to sleep through the morning snack time and through lunch and has been left on the sofa sleeping until your call?
What do you do if one of them likes to play so wildly and madly with your child that they go hypo EVERY SINGLE TIME they see him?
What do you do if you had tried for more than a year to explain this issue to them and they do not change their behaviour at all?
What do you do if people you see regularly refuse to hear your words and refuse to take your stress and needs as well as those of your child into account?

And, what do you do if those people above, in every instance, are your own parents?
Back soon with the answers I have found and with the crafts as promised.
Just needed that off my chest after a sleepless night over it all.

Tuesday 28 September 2010

Frank let loose with a camera

We have been enjoying some family time here on muffinmoon mountain and I have forced myself to take a few days away from the computer. I find it hard and D-blogs and crafty-type blogs are such a comfort to me and I find I always feel better after reading them.
Mr Muffinmoon has a few days off work and we have decided to go out for day trips and get to grips with the garden.
We picked all our grapes yesterday and are now busy juicing them.
The juice doesn't last long but it tastes great and a glut of something is a very memorable thing for my little boy.
Frank and his Daddy also went scrumping for apples and we now have masses of them to store and process.
I love Autumn so much for this feeling of plenty and of squirreling away for leaner days.
I have made more than 20 jars of Cider Apple Butter and five bottles of grape juice as well as stewed apple with cloves.
Next up is an apple and thyme tart later this week and more mountains of stewed apples.
During all this boiling and canning and sterilising Frank was let loose with my camera and I always love to see what he has spent time photographing.
Here is a Frank's-eye view of our little world outside:
His new balance bike leading nonchalantly against the bench
An old double boiler he uses in the sand pit

Mr Muffinmoon cutting the grapes from the vine (I'd love to lose the plastic stuff in the garden but Frank loves his slide and his tractor)

The last sunflower holds it's own

Toys in a pot!

Some of the grapes ...

I have also been crafting like a demon with every spare moment and will be back tomorrow with photographic evidence.

Happy Tuesday to you all!
P.S. If you want cute pictures of Frank with grapes head on over to Mr Muffinmoon's blog : Big Swifty.

Wednesday 22 September 2010

Wow! Take it in ...

We had a call and a message left on our answer machine this evening.
After two articles about the support group we have begun, and a live interview on BBC Essex with my husband, an 83 year old man felt he wanted to call us.
He left the most amazing, heart-warming message.
At eighty-three he informed us that he has had Type 1 diabetes for 75, count them, SEVENTY-FIVE YEARS.
Since the age of eight.
He credited his good health and long life to the efforts of his lovely wife, whom he has sadly lost.
He said he is very careful with his diet and counts carbohydrates.
Let us get this clear in our heads.
This man was diagnosed in 1935.
He is still alive.
So, my lovely, supportive and so exhausted friends look at those numbers and smile and hope. We carry the weight of what might happen with us all the time.
I ask you here and now to add this to what you carry.

Tuesday 21 September 2010

With a little time

It is clear to me that time spent on the laptop trawling through blogs is a continual inspiration to , but it also steals every evening if I let it.
The boy wonder doesn't fall asleep that early and when I finally slump I don't have a lot of creative energy left.
These little beauties from this book were just the ticket for a tired Mama, who didn't want to go out in the dark to the summer house and use the sewing machine but wanted to watch "The IT Crowd" and do some hand sewing. Little Scandinavian Inspired egg cosies for my friend's birthday. Easy peasy to make and fun to sew.
Other crafty things are a-happening too at the moment and I'll post pictures as soon as I remember to take them in the first place! Ahem ...

Monday 20 September 2010

My love, the poet

It was the fantastic Colchester! Free Festival last Saturday and the Castle park came alive with entertainment of all kinds. There was live music, loads of great food, Granny Camp where you could learn age old skills like knitting and sewing, circus skills for all ages, a Kidstival area with masses for kids to do such as a fake beach with sand and fish to play with and a seaside post office where you could write a postcard and get it sent. There was art and craft and bouncy castles and a general air of life being GOOOOOD.
I did an hour's slot teaching children to finger knit friendship bracelets and Andrew, my talented and oh, so brave, love appeared at the Busk Stop as Fred Slattern, slum poet of Prettygate (that's the area of town where we live). Here he is mid performance. We had sorted out his "costume" the night before with me basically saying, " no, not that either...OK just put these on".
He took all my advice and insisted on badges, which went on his bag.
He looked cool. He performed well and people applauded. And those people were not just Frank and I!
I am the proud wife of a poet.
And he even washes up the dishes, not like most poets who just sit around "thinking".
Back tomorrow with some crafty updates.
Happy Monday to you all.
I want to say a huge thanks to all of you that commented on my trip to the coast in the van. Every comment is like a hug or a squeeze from a friend and means so much.
P.S. Jen, I'll take you and Addison on a road trip anytime!

Wednesday 15 September 2010

Home. And breathe ...

A picture heavy set of clues as to what I've been up to.
Can you guess?

Two nights away in a VW camper. Just two nights. No problem, right?
at the campsite there was no, or at best patchy, phone coverage
I was alone with my boy, alone with the weight of that responsibility we all feel so acutely
I was over an hour from home
the weather forecast wasn't great
And yet, I went for it.
And we both survived.
And I feel so glad I pushed myself to do this.
A couple of mild hypos but they were soon zapped with juice boxes and sleeping so closely with Frank helped me feel more confident.
Best moment: Frank walking to the shower block the first morning and saying : "Mama, kiss" and kissing me over and over and over again.
He loves camping out in the van.
Worst moment, and this moment nearly stole the whole bloody thing from me: A hypo coinciding with falling asleep on the A12 on the way home with me unable to stop in speeding traffic and shouting at him that I'd get the juice in two minutes; him falling asleep with his mouth open (you know, really dramatic imagery of a DEAD person) and me thinking "You bastard, diabetes, you will not have my boy".
Juice given and he slept an hour before waking in a great mood and eating a big dinner.
I needed a lie down in a dark room.
I accept this condition as the uninvited bad, and stinky to boot, fairy at the party but I hate the super-size-me additions.
When they fall asleep in the car none of us thinks: "Oh, great, I can stop for a while and read" or "I can listen to my music now rather than Wind in the Willows for the millionth time".
No, we have to think: "OK, is he low or crashing? Should I pull over now or keep driving? Is he pale? Was that a twitch? Is he about to fit? Oh, bugger, I haven't actually been looking ahead for two miles now ...
Oh, my friends, and on it goes ...
We had a great time.

Saturday 11 September 2010

It's a lonely road, but we are not alone

Today saw our first meeting of the Colchester Circle D Group that my beloved and I have set up to offer the beginnings of a network for other parents in our town whose children have Type 1.

We thought it would only be us and maybe one other parent, that people might feel too shy to turn up or just not up for talking about diabetes when they deal with it all the time anyway.
But with a facebook group all set up (Colchester Circle D) and the local papers calling me for a telephone interview and coming over for a photo shoot and the consequent article appearing two days before the meeting, things started to pick up.

So, this morning we were so pleased to see so many lovely, lovely people come along to the beautiful walled garden of the Love Bistro (I know, I know, it sounds so like a bad, bad euphemism : "Hey, baby, fancy coming on over to my Lurve Bistro?") and to begin to share their stories.
Oh, my, just to be able to talk about ratios, carbs, insulin names, BG numbers, pumps etc and not have to explain all the time felt so good (and super efficient!).
It does feel good to be with others who get it, so very good.

Monday 6 September 2010

En route

We finally have the internet back and I have been longing to let you all know how it went last week at the hospital.

To sum up: it was a hugely positive experience.

All the nurses and doctors knew so much about Type 1 that there was no explaining ANYTHING.

It was all just known and seen and understood.

We spent time going through the story of us and our boy's diagnosis after which we had a good look at some different pumps and went over the absolute basics of how they work.

That really annoying thing happened when you get asked if you have any questions and you (well, I do this, maybe I am the only one) go totally blank and almost ask where they got their lovely shoes or some such inanity just for something to say!

So, at the end of all this and after seeing three different people we have the following great news:

Frank is at the 50th centile for both height and weight (he was lower for at least a year after diagnosis so we feel very pleased about this)

We are on the list for a pump (we went for Medtronic and Frank went for blue) and should be good to go sometime around the New Year.

Frank HBa1c is at 7.7 according to the Addenbrooke's test - so he's holding steady.

And breathe ...


And here he is, the Boy Wonder himself, wearing and old, spare pump for practice. He loved the idea of a pump and was really into it meaning no injections (most of the time) and into clipping it on his trousers.

Every time I ask him to come over for his insulin now he says "I don't need insulin, I've got this!" and he points to his pump and does a kind of superhero stance.

Just adorable (it is possible I am biased!). And a close up in which you can also see his black crayon (he insisted everyone had to see his crayons and who am I to deny this?).

I found myself very tired after the build up to the hospital visit and so this week we will be enjoying quiet days at home. Today that involved lots of leaf rubbings and colouring as well as a trip to the local library for Autumnal-themed books and then some gardening.

You can see some of Frank's leaf rubbings hanging on the art wire behind him. They look so great as all the veins are picked out and we tried to choose autumnal colours. Some of these will be used for birthday cards and some to stick onto brown paper for wrapping paper.

I love crafty little activities like these and they remind me of how many hours I spent doing the same kind of things as a child.

So, we wait now.

And an idea of a trip to France in January might have to go on hold as we need to be around and available then.

No problem.

Maybe we'll just go earlier, maybe December again as we loved it so much last time.

Brittany is calling me.

But then it almost always does!