light :: chai :: smoothie moustaches

Our breakfast table this morning saw us enjoying Berry Blast smoothies from Heather's Wholefood Kitchen and, for balance you understand, croissants alongside!
Today saw crisp clear blue skies, the like of which are so very welcome in February and which lift the spirits so immediately.
The light in the dining room at breakfast time (around 8am) was just gorgeous and here you can see our usual set up of diabetes kit, Lego instruction manuals and breakfast.
In this rather foodie post I must also mention that Andrew and I have been enjoying the odd chai made with rice milk of an evening. It has been lovely on these chilly evenings to sip something so gently spicy and warming.
I managed to give up tea and coffee about ten days ago.
I love both but had such a snotty heavy cold that I couldn't face the cow's milk I normally have in tea and the thought of a milky latte made me feel ill, so I went cold turkey on the caffeine and thus the milk.
After a couple of days I had a few hours when I would have gladly sold a kidney for a cup of really strong tea or coffee but then it was fine.
I had been using oat milk in cooking and smoothies but this week tried rice milk and prefer its taste. The problem here can be that these things are not so easy to come by. The big supermarket near me, for example, sells oat milk but not rice milk. For rice milk I have to travel further. I suppose it all boils down to me getting organised and buying in bulk as all these things are long life products anyway!
And, of course, how could I not post this picture of Frank with a great big smoothie moustache?! We've had smoothies twice this week already and I am finding them a great way to sneak all kinds of goodies into my suspicious around food boy!
The Wholefood Kitchen course is going really well and my intention for the course is to really increase my intake of veggies. I love them but admit I am lazy about eating loads of them. Fruit I manage more often but veggies take a bit more prep and I have committed myself to taking the time to make this happen.
This evenings meal of curried vegetable chowder was soooo tasty and will last two more meals, so the prep time really isn't wasted.
Happy Sunday to you all.

The Power of Yes ~ You Can Do This

If you are new to this lark of being a parent to a child with Type 1 Diabetes I have some things I'd like to say:

• 
  
  Welcome. Come in and sit down. Have this cup of tea (and yes, we do drink it like this in England, all day!).


• 
  
  OK. A door has closed, actually it has slammed in your face, probably bashing your nose as it did so. Children do not get diagnosed with Type 1 Diabetes gently, over a long period. It's a sudden diagnosis (with a slow mo "Oh, of course, that's what it was " thing playing out in the parents' heads) and life will NEVER be the same. NEVER. That road you thought you were rolling down is gone. But that's OK because, when it comes to it, insulin exists and your child is about to have a fabulous life.


• 
  
  Have a good cry. Shout, sob, let the snot run down your chin. Then pick yourself up and get on. Your child still has Type 1 Diabetes. Damn. Repeat this as necessary. Two and a half years in I do it once or twice every four months or so. I have stopped wondering when I'll get used to it. I already am. It just still knocks the wind out of me on occasion. I still grieve. I am still raw to a great extent. I allow it to and then return to kicking it into shape.


• 
  
  Take each day as it comes, at first. Planning for parties and trips and flu season can come, and will come, as and when you need it to. If your child has a fever, read up on fevers. If you have a trip planned, buy juice and snacks and read up on travelling with the D-sprite coming along too.


• 
  
  Get on line and CONNECT with others. Yes, you are shocked and yes, you are tired but there is such comfort in being in the company of others who are as wrecked as you. They get it, fully.


• 
  
  Say yes to life; to experiences. A regular routine is so good for the management of Type 1 Diabetes BUT doing other exciting stuff feeds the soul and is imperative. Choose wisely the first party or sleepover or trip and plan well. It might still be crazy but you'll learn and you'll feel great for looking it in the eye.
  ********************************************

You Can Do This because many others do it too.

And they are not superhuman.

Just parents and carers.

You are not alone.

*****************************************

You can do this also because you have to.

And with that thought comes a certain freedom.

It's non-negotiable.

Get that kettle on and do it with pride and soul and attitude and the knowledge that you are among friends.

P.S. Always skip and eat your carrots.

My little extra safety net

I have a lovely, creative friend (Hey, Tanya!) who is a jewellery designer.
We met when she started the Knit & Natter Group that I have been going to for two years now.
Generally, she works in silver and gold and I love her work.
When she quietly told the small group of us at the knitting group that she had an idea for a range of children's jewellery we were all really pleased for her and, I have to say, I was particularly excited as I thought Frank would really understand why I'd like him to wear one and would feel OK about it.
The bracelet, and there are necklaces too, comes in a range of colours and we chose the sea colours for Frank as he is so into his sea creatures at the moment.
The beads are imprinted with my mobile phone number. If Frank and I are separated anywhere public he knows to tell people that my number is on his bracelet so that I can be contacted.
It has become increasingly clear to me that a medical bracelet is great but Frank has tended not to want to wear one. I would like him to and he will soon I am sure but this one makes sure too that I am contacted for information.
This reassures me as I remain unconvinced that every medical person knows how to deal with Type 1 Diabetes.

*****************************
My photos don't do justice to Tanya's great work but if you fancy an extra little safety net then I would definitely recommend these.
Frank's one stood up well to beach time and showers and he has taken to reminding me of times we go out to new or big places that he might need his bracelet.
Tanya's website can be found here : www.tlk-jeweller.com/cherubs
And I get no discount for this!
Promise!
I just love the product and drool over some of her other stuff too ... but that's for another post.

haiku

having put to sleep

the child there's the laundry now

and the summer moon

Issa, Japan

Peanut Butter Krispy Treats

Thank you to everyone that took time to respond to my call for help. It really, really helped to hear other stories and some great ideas too. You are all fab!

*************************************************

In an attempt to get the Boy Wonder to consume a variety of grains ... oh, who am I kidding ... in an attempt to get Frank to eat ANY GRAIN OTHER THAN WHITE WHEAT, I stealthily add various things to recipes he might eat.
To his white bread I add whole wheat or rye or rice flour. He used to eat rice but won't now. He will allow pasta on his plate but tends not to eat it!! At someone else's house he will devour a whole bowl of Bolognese and pasta but, alas, not at home.
He is suspicious that I am sneaking contraband into his food.
He has a point ...
I have taken to adding ground linseeds or ground almonds to his porridge, making it also with half oat milk and half cow's milk. I sneak squash and sweet potatoes into Bolognese sauce. He will eat raw carrots and celery and peas from the pod and that's it for veg.
I am sounding so over-controlling here but I am concerned as he won't eat other veggies or rice and with his Type 1 Diabetes I am aware that any days of high BG will result in an extra loss of nutrients.
I think we do OK, all in all.
I am not panicked about this but maintain an awareness of what foods are building his body. He eats ice cream and crisps, I am no purist and am very clear on the idea of never forbidding any foods. Children with this condition need no extra food issues in the mix, ideally.
I am reading "The Healthiest Kid in the Neighbourhood" by William Sears at the moment. Lots of the information in it isn't new to me as I have always been interested in nutrition (thankfully, as I had a head start on getting a grip on the whole carb counting thang) but it is very informative about snacking and phases kids go through. I have also found it really useful for giving me ammunition when shopping with Frank. Saying things like "We don't buy that in our family" has been working wonders. However, I think of people like Meri, with older kids, and know I will only be able to use this for a short while. I'll be shopping on line soon!!
One snack that I have rustled up this week has met with a lukewarm response but hasn't been rejected outright are the Peanut Butter treats above. They are really tasty (Andrew and I love them!) and from this book, which has me inspired to go veggie again very soon.
I bought my ingredients in the Wholefood Store in Manningtree (the store I long to be locked in overnight!) and used puffed quinoa instead of rice. They are gluten free and I like to keep them in the fridge to keep them more solid and chewy.

Peanut Butter Krispy Treats
3/4 cup smooth unsalted peanut butter (I only had salted so I omitted the extra salt)
3/4 cup maple syrup
1 scant teaspoon fine-grain sea salt
2 1/2 teaspoons agar flakes
4 cups unsweetened crisp brown rice cereal

Combine the peanut butter, maple syrup, salt and agar flakes in a large sauce pan over a low heat and stir constantly until smooth, hot, melted and bubbling just a bit. Turn off the heat and add the cereal. Stir until well-coated. Transfer to an 8 by 8-inch baking dish and press into place. Refrigerate until completely coo, then cut into small rectangles with a sharp knife.
Makes around 20 treats.

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In more specifically D-related news we had our first failed site two nights ago and were up until 3am testing and bolusing every hour until we decided to grasp the nettle and change that bastard. Frank moaned a bit but then chatted to us and we all go on with it. the cannula was all bent sideways. His pre-breakfast BG was 5.7, such a relief after 23.8 and similar all night.
In retrospect as I primed the set something felt different in the spring-action thingy, but instead of not using it, I kind of imagined it would all be OK even though it felt a bit wrong.
Next time I won't do that. And from what I read there will be a next time.

River Cottage Canteen

(Andrew's bitter at the River Cottage Canteen)

After leaving Devon last week we headed East.
En route to my sister's place in Dorset we stopped off at the River Cottage Canteen in Axminster.
We are big Hugh Fearnley-Whittingstall fans in this house and so admire him for all he has done to raise awareness of local food issues and animal welfare.
At the canteen Frank was able to have an organic beefburger and chips (he never eats the bun). The salad leaves on the side were regarded with horror and removed by me.
He regards them rather like I would a dead rat on my plate!
(The boy wonder and his meal)
(The other boy wonder eats his faggots)

And Andrew chose Faggots.
I kid you not : pig's heart, liver, and fatty belly meat wrapped with caul (membrane from the pig's abdomen) No idea what it's called in the USA.
Am pretty sure it's not the same thing ... ahem.

I had the beef burger too. I am not at all fond of red meat but felt that here, in this cafe, of all places, it would have come from a happy cow.
I was veggie for22 years and still struggle a bit with the dead animal aspects of meat, even though I am in favour of it being eaten and farmed sustainably.
This day was a happy food day.
Other days are not so great.
****************************
I love to cook and have had such a great time introducing my boy to a whole variety of foods and tastes.
He began with rice porridge and mango and banana.
He ate everything I gave him, except avocado.
My boy that eats absolutely almost anything has now become the same child that (I swear he said this) told me three nights ago, on being presented with his bedtime snack of dried apricots, almonds and slices of apple: "This apple isn't crunchy enough, Mummy".
My mouth dropped open and I felt bewildered, again.
I am struggling to get a variety of food into him.
He is eating things one day and refusing them the next, often for the most spurious reasons.
He will eat meat and potatoes.
White bread and peanut butter (although I an now sneaking almond butter into him by stealth as I hide it under the peanut butter! Mwahaha!).
Carrots and peas from the pod.
He would live on bacon or

salami given the chance.

Have any of you been through anything similar to this?
Is it a phase?
Do you have any recommendations?
What more can I do?

P.S. I honestly don't let Frank know I have these concerns. He knows I want hm to eat lots of different foods that help him grow strong, but that's the extent if it.

The hypo in the night

Two nights ago Frank had a hypo at 2:15am.

Well, he called "Mummy" quietly twice in his sleep and, as he sleeps in a little wooden bed right next to ours, I heard him.

The first time I wove his quiet call into my dream and the second time I woke and saw that he had thrown himself forwards on top of the covers.

So, I checked his nappy, which was full and his PJs, which were soaking and got up with a sigh to change the sheets, PJs and nappy. Even with great BG numbers he drinks water in the night.

It has become a habit and I am loathe to force a break in it as most nights he is OK.

This scenario is nothing unusual for us. I got on with the changing and reassuring that he'd be warm and dry in no time and he got on with relaxing and dozing like he normally does.

Then I tested his BG as that very morning I had mentioned to Andrew that it seems like a good idea, if one of us is up anyway to do a test.

He had crashed.

2.9.

Two point bloody nine!

In the night.

And still drinking copiously, as though he is high.

I believe I muttered "Oh, F**K!" to myself and legged it to the packs of apple juice we leave for just such an occasion (although occasion sounds like a wedding or celebration of some sort and this most certainly wasn't that!).

I applied juice to my child and then sat reading in the room next door for fifteen minutes until I could test again.

Numbers good.

Boy sleeping.

Mama's nerves jangling like a big bunch of keys on a rodeo rider.

Good grief as Charlie Brown would say.

****************************************************

So, anyone new to the Type 1 malarkey, or just a friend popping by, I can say this much:

I am tired.

Always.

But I WILL stay awake because adrenalin is an amazing thing and the alternative just doesn't exist.

I WILL do my damnedest to keep my child alive and well even if I lose my mind at times in the process.

I WILL ramble on about Type 1 as though you all know all about it because you really should.

*********************************************************

Andrew and I have zero local support network with all this.

We are alone.

But it matters not.

He is ours and we love him.

My heart beats for him.

Always.

And anyway, who needs sleep?!

P.S. In case anyone wondered, no, I did not take photos of my sleeping child as he lay in bed at a BG of 2.9!!! This is a photo from earlier in the month when I wanted to capture his messy sleepy hair.

Put the pancreas aside and let's talk Spleen

And specifically Spleen Qi Deficiency.

Have I put you off already with the weird Qi word?

I hope not.

I hope you know me well enough by now, some of you at least, to know that I love good food. I'm not a great believer in faddy food trends but rather favour well-made food with real ingredients.

So, I am not about to get all weird on you all.

Let me tell you the story ...

************************************

I am a MamaPancreas called Jules.

I am a good pancreas and do a great job but I am tired.

Always longing for just a bit more sleep; not much, just a bit MORE than I am getting.

Since Frank started pumping insulin I and my sidekick Andrew have been doing more BG tests than ever and have been testing at 10pm, 12 midnight and 2:30 for around six weeks.

Those times make it hard to get sleep in between and have both tended to stay up until midnight every night.

This shouldn't be too bad but I was feeling really tired.

More than usual.

Add to this the general waking up suddenly every morning with a four and a half year old landing on me like an eagle swooping down on its prey, and the subsequent long days of mamalife.

I felt like I was walking through treacle.

Wading through life.

I hadn't expected to be skipping exactly but less backward drag in the heavy feeling legs and arms would be good.

So I decided to take restorative action and eat lots more salad and make green smoothies and pink smoothies, and eat raw food as much as possible.

You see I have a soft spot for craft blogs, and all these amazing women with their Waldorf children who wake up singing and bake bread together whistling and never watch TV, were drinking green smoothies and bleating on about how great they felt.

I swallowed this, wanted the light feelings and was dazzled by the idea, the mere smidgen of the idea of being LESS BLEEDIN' TIRED!

For the last three or four weeks I have included lots and lots of smoothies in my diet, lots of salads, lots of raw things.

OK, I still craved milk chocolate and gave into those cravings sometimes and I have been eating bread a lot too, to the exclusion of other starches, but let's be clear: I have been eating lots of salads and loads of fruit.

***********************

Then came last Thursday.

My sometimes day to do my own thing.

The day when heroic hubby sometimes steps in for me to do my own thing.

After a fruit and yoghurt breakfast I drove joyfully out to meet my Knit&Natter group at the tea room at the Tiptree jam factory, knitted sitting in the sun, nattered and then left bang on time to drive home as I knew I'd have lunch alone.

A huge salad and a green smoothie were made.

Spinach and oranges and red onions and pine nuts and cucumber and feta cheese were in the salad.

Mango and banana and apple and more spinach were in the smoothie.

I ate the lot whilst sitting on the bench in the garden in the sun.

Idyllic.

I felt smug.

I was treating my body well.

I would feel so much better soon.

*******************************

Cut to eight fifteen that evening and I was putting Frank to bed.

He is in his little wooden bed next to my big one and as he drifts off playing alphabet games with me I felt more weary than ever in my life.

My very bones felt tired.

I was face down on the double bed slurring my words Frank fell asleep and I slept too.

This is sometimes normal, this falling asleep with one's child, but believe me when I say this felt different.

There was no feeling of "I'll just have a nap".

I was pole-axed.

I woke at 9:45 just in time to do the ten o'clock test.

And then my tongue felt sore.

It felt really tender. So I stuck it out at myself in the mirror and saw a tongue but with these weird teeth marks, like scallops, down the edges.

Weird, maybe it's a sign of tiredness, I thought, and padded over to the laptop to look it up.

*********************************

Ah me, I know what you're probably thinking.

The Internet.

Don't go on the internet for medical stuff. It will overload you.

Well, it didn't.

I was fine but I did startle my husband by laughing and snorting madly for long minutes at a time.

******************************************

A tongue with indentations down the side is, in Traditional Chinese Medicine (TCM), a sign of Spleen Qi Deficiency.

Fair enough, "But what does that even mean?" I hear you cry!

Here it is (and I am only kind of summarising what I have found out after a week on line, I am no expert in this):

In TCM Spleen Qi Deficiency can develop when a person is or has been stressed for a long time, is not rested sufficiently and has extensive worries either real or imagined.

Sound familiar?

It is a result of the body's resources becoming drained and of "dampness" and "coldness" and foods that create damp and cold in the body (as viewed by TCM) being consumed in large amounts.

Symptoms can include tiredness, heavy limbs, weight gain, sore tongue with indentations, weak muscles and thus sometimes prolapses and hernias.

Foods that worsen this condition were listed on quite few sites and they were ALL, without exception, the foods I had been eating and had been increasing in my diet:

Raw foods, salads, iced drinks, smoothies, cold water, wheat based bread.

I kept laughing because even the bloody pine nuts were mentioned!

EVERYTHING, absolutely EVERYTHING, I had consumed that day had wiped me out.

The theory is that cold and raw foods take extra energy for the body to process them as they have to be heated by the body to body temperature before it can extract the goodness from them.

I had always thought raw was always always preferable to cooked.

It seems not in certain cases, such as mine.

I would have loved to be cynical here but what I had eaten and how awful I was feeling just slotted into place.

By chance I hadn't eaten Spleen supporting foods but had eaten Spleen depleting foods.

To the letter.

It was a strange experience reading those papers and visiting those sites and seeing that maybe I wasn't so bad at no sleep as I'd thought.

Maybe nurturing my Spleen Qi would be of benefit because I'm not up for buying supplements or tonics when good food and some sleep and exercise should be good for all of us, right?

The next morning I began eating more cooked and warm foods:

oatmeal and maple syrup, rice cooked with milk and cinnamon, rye toast and honey, stewed apples or pears with maple syrup for breakfasts.

Soups and stews, and herbal teas like ginger tea for lunches.

More soups and stews, warm stir fries and sweet potatoes baked in their jackets for dinner.

Sweetness is needed and natural sweet flavours like maple syrup and dates and figs are good for this Spleen Qi Deficiency apparently.

Eating these has helped my chocolate cravings be less strident.

I am eating hardly any raw foods.

Just for a while, almost as an experiment.

It feels quite maverick in contrast to the raw foods, green smoothie, spring cleansing blogs I'm reading.

And the verdict?

After a full-on weekend and a really massively busy week this week so far and continuing until the weekend (hubby working two jobs this week, Frank out for the count with a fever today, Jack coming to sand the floor in the dining room on Thursday so it has to emptied etc etc - ie.LIFE!)?

The jury is out long term but in the short term I am feeling so much less tired.

I promise you I am sleeping no more at all but just feel normally tired rather than pathologically exhausted.

I know nothing really about Traditional Chinese Medicine and its recommendations but I am going to look more into it.

**************************

Here are some links :

http://www.pulsemed.org/dietspleendamp.htm

http://www.mybodywisdom.net/pdf/Spleen_Qi_Nutrition.pdf

http://www.curepoint.co.uk/healthy-diet.shtml

http://www.acupuncture.com/nutrition/diet.htm

I was going to ask you to let me know what you think, but I reckon you'll do that anyway!

Week Two with Lucky Pump

Please excuse my absence this week.

I am following all of your posts but finding very little time or energy to comment. You are all with me every day, I just don't feel up to much but getting to grips with this new phase.

But after my saint of a husband letting me lie in this morning I have time and energy for an update of our week:

**************************

Lucky Pump is with us all day, every day.

He comes cycling with us when Frank comes out to the local shops and the library with me, nestled in Frank's pocket as he races along.

We are in telephone contact every day with the hospital as we all work to fine tune the basals and we are testing BG all through the day and then at 10pm, 12 midnight, 2:30 and then on waking at 7am.

We work it thus: one of us does the 10pm and the midnight whilst the other, in theory, gets some sleep in the spare room in anticipation of doing the 2:30am test.

In practice, we both stay up until twelve and then whoever is doing the 2:30am test sleeps fitfully until their shift.

We are exhausted and the day before yesterday I broke down as I was so very very tired and yet couldn't sleep even whilst lying in bed.

My poor husband had to deal with a sobbing wife at one in the morning, convinced she was an unfit mother.

This new piece of kit attached to my baby clearly has me wired too.

It does not feel under control yet.

I lie awake watching him breathe and, tell me you don't do this and I won't believe you, having those dark nighttime thoughts that seem built into the human psyche about what a terrible person I am and wishing I was a calm zenlike mother rather than this complete mess.

Then sleep overcomes me after the final test and in the morning Frank wakes and smiles at me and says "Can I have a story?" and all is well. I feel like I have a newborn again as the nights are long, but this phase will pass and I will sleep for more than half an hour at a stretch again.

Andrew is amazing in this.

He has always coped more graciously with less sleep than me.

*********************

And on the up side: I love how the pump has made snacking much less of an obstacle course.

Today I made wholemeal chocolate chip cookies and Frank, who has declared he only likes uncooked biscuits, polished off the scrapings in the bowl.

How could I resist taking a picture of this boy, this wonderful boy, licking the bowl with such gusto.

This is how he lives life.

I have much to learn from him!

P.S. A quick kit question for you: What kind of little bags or packs are good for kids Frank's age to hold the pump? Where can I get a little bum bag for the pump? Well, we call them bum-bags over here, but I have heard them called fanny-packs in America (this for a British person brings a whole different image!).

What do you do at night?

Can anyone recommend some good stuff?

I'd be so grateful.
My love and friendship to you all.

I am always so grateful for your voices and thoughts.

And beyond ...

Oh, what can I possibly say to explain how I am feeling?

We have pump training next Tuesday and the following Wednesday at Addenbrooke's in Cambridge.

We want this.

Frank wants this.

BUT I am aware that I am feeling so scared and jittery and freaked out about taking on this NEW THING.

I've become so relaxed about injections and thought I'd be feeling great about the pump but, when it comes to it, diabetes just sucks, doesn't it?

Even when you have to do new stuff it's scary rather than exciting.

It's never like "Oooh, a new flavour of cheesecake, that'll be good".

No.

It's "Oooh, shit, I might get this wrong and he'll bleed or be rushed to hospital or collapse or have ragingly high blood sugar for a while or ... or ... or ...".

Diabetes sucks.

I know this will be great for our ability to maintain Frank's health but I am scared.

Plain and simple.

Diabetes has so leeched my confidence and sapped my intelligence that I fear taking this on in case I am not up to the job.

I know Andrew feels the same.

I will be back next week with an update.

I believe we have a week of using the pump with a saline solution to get used to it before we are allowed to do the real thing.

So many of you have been here before and I had contemplated not posting about my wussy feelings but I do want to be honest.

Happy Weekend to you all and off we go ... to infinity and beyond ....

Wish us luck.

Smugness Comes Before A Fall

Two and a half years ago I was the smug Mum of a child that slept really well. I distinctly recall chatting to a friend around the time of this photo and she was telling me how often her two year old woke up in the night.

I suggested a sippy cup of water as that seemed to help Frank sleep through. I felt happy my child drank water and thought he was just like me as I always have a glass of water by my bed.

One sippy cup became three all lined up in his bed and he needed them topping up at 1am, 4am and then woke for water early in the morning.

His nappies were flooded.

His cute sleeping bags soaking wet.

In Dorset, visiting my sister, in the May before diagnosis in the October, one of the requirements of the holiday cottage was a washer dryer as we always had so many PJs and so much bedding to wash.

Hindsight is a wonderful thing, eh?

It's all so clear, all the signs when I look at it now.

But with no history of diabetes in the family and no real idea that it was even a possibility for tiny children, we staggered on washing and drying more than any family I know.

Scroll forward to now, or rather last night to be specific.

Frank is in our room on a camp bed and we are all happy with this.

He came in at Christmas and is staying there for a while.

Last night his BG was good before midnight. But the habit of drinking water in the night is now, it seems, so ingrained in him that he needs it all the time. Last night saw me changing his nappy four times and his PJs as many too. His sheets were wet and I put him on a towel as I had no energy to strip the bed too.

I hate this aspect of the D for us. I can't bring myself to deny him water.

It's water.

He seems to really need it.

He now has a safe sippy as I got concerned about him having drinks from plastic for so many hours of each day. He has a Klean Kanteen for daytime and he drinks a lot. Even when the numbers are good he likes to drink water.

But I am tired.

I am so gentle with him. Always. I will never complain to him about needing water or peeing a lot or having to change his bedding three times a night and his PJs four times and his nappy five times.

I can't imagine the time when he is dry at night and as he gets bigger and his bladder capacity even greater I may have to fashion some kind of super nappy by sewing loads of them together.

I fear we are alone with this one.

It is just what Frank is like and we have to deal with it day in day out and night in night out.

I see no end to these nights of BG testing, nappy changing, PJ changing and washing and drying each day.

I have no conversation left. Jen's post the other day about going to a New Year's party and not blurting out that Addison has diabetes as a conversational opener for the first time has really struck a chord with me.

I admit I cried when I read it.

I want this day to come.

I am not there yet.

I am lost in the eye of the storm of this disease.

I have nowhere else to be and nowhere I'd rather be. But there are long days and longer nights when I realise I have lost all sense of myself.

I am avoiding socialising sometimes because all I can think about is diabetes.

If I stay home with my boy and we dig the garden and go to the library and bake biscuits then I can almost forget the D because it is so automatic and we are not weird to each other!

So we bake and cycle and walk and dig and I knit and we paint and we watch Toy Story for the billionth time and I blog about knitting and sewing because it's all I do that isn't D.

And what sustains me is seeing my boy grow and develop.

What sustains me is reading other D-parents' blogs and knowing their hearts like I know my own.

And boy, that feels good...

2011 ...

... is a year of plans.

There will be more

• knitting and a mastering (or should that be mistressing) of cables
• sewing (of our own clothes)
• learning new things (crochet for starters)
• planting veggies in the garden and eating them (that means you too, Frankie Boy)
• trips (to the Isle of Mull, the Cotswolds, Finland, the beach (lots) and Dorset are being planned)
• exercise & fresh air
• embracing of the moment
• music in our lives, both live and just around us at home
• art
• locally sourced food on our plates
• blogging and photos
• comments on blogs and yet no guilt if I don't find the time
• sleep ( a girl can dream ...)

There will be less

• screen time
• guilt
• worry about what others think
• fear of the future
• "responsibly sourced Madagascan prawns" on our plates (oh, yes, I fell for this one a month ago and hubby is still laughing at me!)
• time spent with people that don't sustain me or "get it" with regard to the D

Are you planning more or less of anything this year?

Happy 2011 and I look forward to sharing this year with you.

My husband posted this the other day (it's a friend of his) and I wanted to share it with you today, at the beginning of a new year.

It's raw beauty brings me to tears and it feels such a privilege to hear it each and every time.

Oedipus and I'm Wrecked

This scene on from our week sees Frank out for the count on the sofa and me wrapped in blankets, reading, feeling crap.

Hello all.

Here I am raising my head again and realising a whole week has gone by.

The sniff and the red nose turned into a full-blown cold with added extras of a fever and hacking 40-a-day cough.

Yum.

I managed to get through cooking for nine on Christmas Day and then declared myself an official wreck.

Frank caught the lurgy too after wishing me better by kissing me repeatedly all over my face! It has thus been a lively week in terms of BG testing and insulin needs and sleep has been lacking for all of us.

The Mexican wave of lurgy continued to our lovely French guests, Severine and Louise, who left us on Tuesday with cheery waves and hacking coughs.

Now Mr Muffinmoon has it but declares himself "at 80%" (yes, he is a nerd with numbers, great for a D-parent really).

Frank has been sleeping in with us whilst our guests were in his room and the other night Mr M left us together in the big bed to sleep well and in peace in the spare room.

Frank declared, on waking, that it would be good idea for Daddy to sleep there all the time "because I just want to be with you all the time and you're not prickly".

Be still my heart.

That boy can floor me when he says things like this and as much as I love my husband, I could so easily go for this Oedipal scene.

I like hearing him breathe and sleep so much better myself when he is with us.

I am very much in favour of co-sleeping in general and defy any family to say that their children have never forced games of musical beds into their lives!

Now with us all ill it makes sense to sleep near each other because we can and the carrot of a little bit more sleep is a potent one indeed.

So, it is New Year's Eve and we are poised to enter our third year as parents of a diabetic child.

A child that makes my heart sing like nothing else.

A child I want to raise to engage with life and never let his diabetes hold him back from taking part in anything he wants to try.

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Happy New Year to you all!

Much , much love and a big hug ( at arm's length, of course, in case I infect you).

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And I leave you with a photo of what remains of the Christmas Cake.
Huge great chunks of it were given away to family and friends and Frank won't eat it, but it is still tasting great and looks so lovely with its hat of nuts.

My post seems to be weirdly spaced, a bit like me this past week! Apologies for that, will try to sort it soon.

Wow.

Wow.

This is all I can say.

Just finished breakfast and checking comments on my post from yesterday.

Found this.

"Ilya
Sorry to disappoint you but the way you feed the kid and your perfidious I heart insulin slogan is a premature death sentence. Do some reading if you really care about the kid. I'm pretty darn serious and know your reaction in advance. You are wrong. Insulin kills and this is a fact.
15 December 2010 01:58 "

How helpful.

The Diabetes Toad

My cousin, Maggie, lives in Ottawa and kindly sent me a special feature from The Globe and Mail all about Diabetes.

She, herself, was diagnosed with Type 1 in her forties.

A huge shock and I happened to be over visiting when the doctor rang with confirmation of the diagnosis.

I remember her son, Jorin, hugging her and them both crying and I quietly left the room to let them talk and be together before I spoke to her later about what it meant and how she felt.

I was clueless.

She handled it then and handles it now with her usual, and enviable, forthright attitude and determination to look it in the eye.

With Frank's diagnosis, somewhere around fifteen years later, I was still clueless.

Maggie never made a big deal of it but just got on with it.

Nothing was hidden, but I never asked many questions either.

Now we see each other every six months and have so much to talk about.

Not that we ever struggled but the Big D does make an appearance in our conversations now more than it did before Frank's diagnosis.

Knowing what I now know, I feel ashamed of this, of not finding out more and being more supportive

So, Maggie ticks along managing her Type 1 brilliantly. She chooses to not have a pump and that works for her.

We want a pump for Frank to let his tiny body have less daily invasions.

We are all doing great.

And then I sit down to read the articles from The Globe and Mail supplement.

I read a few lines and this incredible physical, totally physical, feeling rises in me, like a submerged toad that has been in the pit of my stomach, rising and rising to my (now constricted) throat and I close the paper, and feel the hysteria subside.

What on earth is that?

It's the Diabetes Toad.

It lies there, watching and waiting and rising to strike when you let your guard down for a second.

All seems well and then all of a sudden up pops the freaky toad, all full of its own importance, and I am knocked for six again.

Like it happened two weeks ago not two years ago.

I have been pondering this post for a few days now and was interested (and relieved) to read both Meri's and Reyna's posts saying very similar things.

Sometimes the magnitude of DIABETES and not the numbers or the carbs or the exercise hits us all and we crumble a bit.

For a while.

And then, well, what are our choices here?

Let's be honest.

Are we able to say, "Nope. Can't do it anymore. Too scary. Gonna give it to someone else?". Ha!

We want to do it because we need to do it because we have to do it.

The momentary wobbles are about looking into the abyss and then going back to the coal face (crazy mixed metaphors, I apologise!).

And at the coal face is where we belong.

I certainly wouldn't want to be anywhere else.

So, day to day, the Diabetes Toad is pushed down by life. Everyday life.

And to lighten the mood here are some images and thoughts of this week so far:

1. I've been sewing to YouTube of The Dick van Dyke Show. I love him so much. And I hear even porpoises love him these days. I've always said porpoises have good taste ...
2. We've got snow and lots of it. Frank is a happy boy.

3. Snowmen have been built. This was the first one after just a night of snow. He's kind of small but the latest two are much bigger.

4. A Christmas Cake has been baked. I soaked the required tonne of dried fruit in brandy for a day and then made the cake. We don't normally have one but Sev and her friend Louise are with us over Christmas, along with my parents and aunt so a cake might be called to do service!


It gets wrapped like a parcel before going in the oven for three hours.

And looks like this when it emerges.

I will "feed" it with brandy every few days up until Christmas and cover it with fruit and nuts and then glaze it with apricot jam.

Traditionally it is eaten with a chunk of crumbly cheese but most people these days probably go for a cup of tea alongside instead.

I will happily post the recipe sometime if anyone is interested in cakes that are so heavy with fruit they could sink a ship!

It tastes great, I assure you.

And

5. Mr Muffinmoon is out at a Poetry Slam this evening, performing as Fred Slattern: Slum Poet. What have I planned? Tamari cashews and a gin & tonic, that's what! Oh, and knitting like a mad witch as it's already December and I've been slutty with my handmade promises ...
Much love and peace and great BGs to you all.

Taking the D to Brum

We are just back from five days in Birmingham (nicknamed Brum for those of you unaware and confused by my cryptic title).

It was a first for all of us having never really got to know this lovely city before.

And it really is such a lovely, multi-cultural, friendly, lively city.

I really was so very impressed most especially at the fantastic, friendly service in all the cafes and restaurants. People spoke to me and engaged with Frank.

It is sadly not always the case elsewhere.

We had such a good time, stayed in an apartment in the Chinese Quarter and spent lots of time at the Frankfurt Christmas market that is there every year.

Andrew and I did what we call "divide and conquer", which involves us taking turns spending days or half days with Frank. It seems to work for us and then we get alone time in a coffee shop and a gallery or just mooching around.

Day one saw Frank and I at the Sealife Centre where his treat was this rather fetching shark on a stick! I try hard to get as many wooden and natural toys as I can but, c'mon, he's four and a half, sometimes a shark on a stick is just what is needed!!
At the market there was a cute little roundabout, which the boy had to ride three times and still kept chanting "Again, again, again, again" but at two quid a go we had to stop there.
At no point did he smile for me on this thing as he was so engrossed in driving that engine.

On our last day we went back to the BMAG (Birmingham Museum and Art Gallery) to show Frank the activities for children. We had both visited it on our alone days and want him to find some of the joy and beauty that we do in art.
Brimingham has the most amazing collection of art by the Pre-Raphaelites. Oh my, it was lovely.
It also boasts an Edwardian Tea Room, which is no bad thing ...
And then there was this amazing, just amazing, tactile, warm wooden puzzle of the Modigliani portrait above.

I loved this so much. Frank did it three times and had to be dragged away.

And then back home Frank and I had so enjoyed the pretzels we'd eaten we decided to make some of our own, leaving out the poaching them in water first (as I nearly set fire to the house last week making bagels and not remembering that a tea towel placed on the oven top next to an open flame WILL CATCH FIRE - I've lost a little poaching mojo).
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And onto the BIG D.

We had such a varied time with it all with Frank's number being so bloody random that I sometimes wonder if it isn't all a great big social experiment. His fingers are increasingly reluctant to bleed and I loathe pricking him four or five times every meal time. It's so crap and whilst I am on forced-jolly-auto-pilot, there is a part of me still screaming that I hate it and it's not right or fair.

My poor beautiful, brave, brave boy.

I find that wearing.

One night I slept so little and was up four times in the night that when it got to my alone day I spent it in the art gallery and then
bought a DVD and some yummy hummous and salady bits and lay on the sofa half asleep for the afternoon. Oh, and some chocolate.

Is it bad to go all the way to Birmingham to lie on a sofa for a couple of hours?

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I will be back tomorrow with my response to Jen's kind award (Thanks, lovely Jen!!) and seven things about me that you might not know.

You already know that I use the words "salady bits" ...

D-Blog Day - Six from muffinmoon

Having dried my eyes from reading everyone else's six things they'd like people to know I feel ready to add mine and I apologise to anyone, friends and family alike, for the language I might use.

What I'd like you to know about Frank's Diabetes:

1. I did nothing to bring it on, Andrew did nothing and Frank most certainly did ABSOLUTELY NOTHING TO DESERVE THIS. (So, to the woman who asked me just over two years ago, Frank having been diagnosed barely two weeks before, "So, when did you stop breast feeding?" I now say "Oh, just f*@k off". At the time I blathered something about auto-immune issues).

2. Frank's diagnosis robbed me of a feeling that I could cope with anything. I now know I can't. I can deal with diabetes most days really well but can't be allowed to operate any heavy machinery anymore as I am too sleep deprived and carb-fixated. It steals your bounce and makes mortality a constant companion. I will never let Frank know how hard I still find it. He needs to be free to just be a child.

3. Frank can eat anything as long as it is measured and accounted for by me or Andrew. We let him eat and he eats well. Sugary sweets wouldn't have been much on the menu for him without diabetes and that hasn't changed. Please stop bemoaning in front of him how awful it must be for him that he can't have sweets.

4. Frank will not grow out of it nor will it get "easier". It is for life and it is chronic and it is different every bloody day. Sympathise and try to empathise. It is hard and having people look me in the eye and really see me is important. Don't fob me off with insincerity.

5. Parents of a diabetic child often feel judged by others for whom Type 2 diabetes is much more understood. Type 1 is not the same. Insulin is vital to keep Frank alive. He developed diabetes when he was just two years old and had not lead a debauched life!

6. Having a child with diabetes makes everyday life an intense experience. The highs are very high and the lows plain awful. But it makes you realise your strength. You find that you are after all made of gritty stuff.

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And a quick number seven:

Do not piss off a parent of a Type 1 child. They are sleep-deprived, insulin wielding bundles of emotion and have enough drugs on them to fell a horse.

Be nice!

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(It is late here in England and I have only just come to my computer and found it is Diabetes Blog Day. I couldn't not post, this stuff means too much, though I fear I may have rambled on weirdly.

Tomorrow I will post the granola recipe but for tonight I want to send a big cyber hug to all you D-parents and I want you to know how much you mean to me, how much you help me and how if I ever come to your town I will be looking you up and calling in for a face to face chat and a real hug in place of that cyber one. )

Art or Science?

We have an ongoing discussion in our house about whether the management of diabetes is an art or a science?

Mr Muffinmoon feels it is a science, pure and simple. As does our Diabetes nurse, Shelagh.

For me, however, it is an art, almost pure and almost simple.

For example: At what point are we ever in full possession of all the facts?

Er, that would be never.

Let's talk it through:

How much is Frank going to exercise today?

How much will he grow and how will his hormones affect him today?

How many hissy-fits will he have and how will they affect him?

etc etc etc

There are just so many variables that it is impossible to make a decision and feel entirely confident in it.

Steve posted recently about instinct and mine has served me very well since Frank was diagnosed.

We had friends over for supper the other night and we were talking about this with them.

Mr M stuck to his "It's a science" theory and I stuck with my "It's an art".

I then asked him how then, he would explain the night I got home from Henley and we tested Frank's BG at 10pm, went to bed at 11pm and at 12:10 I got up saying "I can't get to sleep I need to test Frank again, some thing's bugging me".

Frank was at 3.3.

"So, what was that?" I asked Mr M in front of our friends, "An art or a science?"

His reply?

"That? Oh, that was just weird".

So there you have it, there are now three options art, science or weird!

What's your opinion?

I'd love to know.

No sleep til ... well, just no sleep!

Another short trip to Henley-on-Thames with my boy. Just me, Frank and my friend, Anne.

After the shocking and so saddening news from last week I looked my fear in the eye and took Frank away for three nights in a B&B.

My reasoning being "Well, if it happens, it happens, I'll do my damnedest to prevent it, but will not give in and let it rule me".

Bravado before a fall?

Turns out the fear isn't so easy to dismiss.

No shit Sherlock!

*********************************************************************************

Henley is lovely, Severine is there and Frank and I already know and love the B&B and the family that run it (they put Brio trains out for him!).

It all sounds so great, hey?

But ... oh, the lack of sleep.

Maybe I just wasn't ready after the DIB story.

These things can creep into one's brain and fester.

With sole responsibility for Frank and with nerves still jangling I just couldn't sleep.

I tested and listened to breathing and tested again, finally falling into the arms of sleep around 4am and waking at 6am to check again and then doze until Frank bounded out of bed.

I thought a lot of Jen and her post a while ago where she declared something along the lines of "Oh, what's the point of even trying to sleep anyway?".

I was channelling Jen!

Then on our last day Frank got ill with a fever and spent all afternoon in bed.

I felt so frozen and yet somehow managed to sort out numbers for the nearest A&E and the Children's Unit with Jane, the landlady of the B&B.

She was fab but I felt so exposed and so very, very (more than usually) vulnerable.

I called Mr Muffinmoon and could barely string a sentence together.

My voice was tiny.

My sense of humour AOL.

Horrible.

However, at 9pm he rallied and got up, wandered around a bit, chatted and had some yoghurt.

I took a few deep breaths and after another sleepless night took him home.

I sleep better with Mr M fighting the D-Beast with me.

I will take Frank away again.

This much I know.

The rest I shall make up as I go along.

Right now, I am off to bed.
To sleep, oh boy, to sleep.

( Frank today. Funny boy, full of life.)

Some answers ... and a first

First off a huge thanks to all of you for your advice and good wishes.

I have struggled with these issues so very much and have felt so abandoned at times, but, it turns out, I am the answer.

Accepting and working with what you have rather than expecting anything else seems the way forward.

Some of the answers I have found are as follows:

• resign my job

• never leave anyone with Frank who does not appear to take D seriously or refuses/is not able to learn

• limit my own contact with people that make me feel they don't take D seriously




• stop trying to explain why I need certain things done and start voting with my feet

• work hard to remain positive and give new people a chance to learn about D
  
• see a therapist for a while to get through the feelings of my own family not seeming to care enough to make an effort when it is a matter of life and death
  
• blog and read blogs like mad to find comfort and solace and some fab friends who just "get it"
  
• and look for the joy in EVERY SINGLE MOMENT with my boy (not that I don't get ratty and tired too)

Something I love about D (believe it or not) is that it makes certain choices absolute no-brainers.

So much is non-negotiable that the rest falls more easily into place and if you face that with a light heart.

These are the small answers that I have found so far.

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We have been enjoying very wet Autumnal weather over here in England and I took Frank into town the other day to buy some felt in Autumn colours to make a garland and promised him a hot chocolate in a cafe.

It was his first such drink.

Normally he gets sparkling water and gets excited about it and about having a straw.

But what with the information available on line and it being so cold I decided to go for it and ordered him a hot chocolate with cream.

It really made me smile the bloody work it was to enable him to ingest 30g of carbs without major problems for his little body.

It was like a military maneuver!

We ate lunch, injected enough insulin to cover the hot chocolate as well and jumped in the van.

With this playing in my head we headed into town, parked and began the walk to the cafe.

Frank did his usual walking on walls, chatting, flopping around saying he can't walk and then a good few minutes from the cafe saying his tummy felt funny.

Bearing in mind I had injected him with extra insulin I was freaking out a bit but we made it to the cafe, a well known one with its carb content on-line, some of you may even have heard of it!

He was a happy bunny, drank his drink slowly and enjoyed every moment.

We coloured and chatted and said we'd do it again on another rainy cold day.