We are all in the gutter (but some of us are looking at the stars)

It's been dawning on me rather slowly that I may well be more than a little exhausted.  

Our nights have improved over the past week but my rhythms are still out of whack and three months of blood glucose testing around two or three times between midnight and seven in the morning has really, and please excuse the crassness of this, kicked the crap out of me.

It's the other D-word: depression.

It's not major, but I feel it. 

 I am walking through treacle.  

Everything is an effort and yesterday evening after one hell of a long homeschooling day in which Frank was full-on needing my time and energy from half six until bedtime and couldn't seem to settle to doing anything independently, I took to the sofa, lay under a quilt and cried.  

Andrew made dinner.  

Frank looked startled and bustled off to make me a heart-shaped card.  

And I cried. And cried. And cried.

And then I got up and had my cheese on toast with salad and chatted a bit to my boys.  

Andrew went out to his poetry group and, once Frank was asleep, I watched a documentary (Forks over Knives, in case anyone was wondering). 

I needed that release.

Living with a chronic condition is deeply unforgiving.

It is extreme.

An extreme way of living.

And, boy, does it take its toll.

~ time at Musa, alone, a few weeks back, with tea and an inspiring book ~

I hadn't intended to post about this as I try hard to be upbeat. 

But it cannot be denied that I am 45 years old and cream crackered!*

My energy levels are really low at the moment and yet as a D-parent I am running a marathon.

Jinkies.

So, this is how I intend to move forwards.

I will not be visiting my doctor as I am not in need of medicine.

I choose, instead to look to the light and to a sense of personal possibility.

I choose to look up at the stars, from my personal gutter!

I will be making some changes in my lifestyle and might even post about them here, although I feel terribly shy about it at the moment.

Some of the ideas in my head at present involve

• major dietary overhaul with a view to eating a mostly plant-based diet and cutting out the processed foods and caffeine.
• researching sleep, blessed sleep, and how I can get me more of that magical stuff (I'm thinking naps in the daytime whilst Andrew has Frank)
• fresh air and movement (not always easy in damp, chilly northern Europe but not impossible either and I can swim at the local pool)
• less screen time in order to fit other things in (and perhaps a new computer as mine takes an age to do anything!  I can hang the washing out whilst it gets ready for me to send an e.mail!!)
• writing down my goals and values, a kind of personal manifesto if you will, as I am so fuzzy of head that I barely know the day of the week at the moment
• more creative space for myself 
• getting back into reading novels (and this one first)

We go away tomorrow morning to Dorset, Thomas Hardy country, to visit my sister and her lovely family on their dairy farm.

We have rented a cottage in the stunning village of Cerne Abbas.  

Cerne Abbas is well known for this chalk figure carved in the hillside!

(Brace yourselves, anyone clicking on that particular link! )

A cottage we have rented twice before and love.

I am sooooo looking forward to a change of air and to a little time to reflect on my personal manifesto for this spring and summer.

I will be back with the muffinmoon manifesto soon.  

It feels weird to out this all in such a public space but I want to be accountable, even just to myself, but this is as good a place as any to get it all down on virtual paper.

Thus, stay tuned for more and also for pictures of my gorgeous nieces Matilda and Nancy with their cousin Frank!

 Here's a taster form Kersey in Suffolk this Christmas.

~ Matilda & Frank ~

~ Nancy ~

Much love.

xxxx

*cream crackered is Cockney Rhyming slang for knackered, ie. very tired

Choosing Love

Well, hello there!  

This post has been a long time coming and for that I apologise.  

It's a long one too, so you might want to grab a cup of tea!

My blogging mojo upped and left me way back in the autumn and is slowly returning as the winter turns to spring.

Once out of the routine of blogging it can be hard to get back into the right frame of  mind again.  And I have struggled to put my feelings into words.  Struggled to be authentic, because that's what I aim for and I never wish to write from a place that isn't authentic.

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So, here, in the middle of February I welcome 2013 with my resolutions of Simplicity, Vitality and Community as my aims. 

My lovely husband and I spent New Year's Eve reflecting on the year gone by and on what we hoped for for the coming twelve months.

2012 was a difficult year for me when I look back at it.  

And when life is difficult for me, it is difficult for my little family.  

It's a simple equation.

I felt more tired.  More overwhelmed.  More in need of solitude.  Less engaged in my own life.

Reading this it looks like I was depressed.  But I don't think I was!

Just processing some things and moving from one phase of my life to another, maybe.

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

In the autumn we had a difficult time at our hospital appointment.  Frank's HbA1c was its highest ever and I had to look the kind doctor in the eye and admit that I had been running him a little high as I was so very fearful of him dying in the night.

I cried, in the doctor's room and in full view of Frank, and spelt words out so that he wouldn't hear me say words like "die".  

That dark ball of fear in my gut was exerting its hold over me and in that room I had to admit it and face it down.

Anyone with young children knows that sleep can be elusive.  

Have a child with Type 1 diabetes and sleep, good, solid, restful sleep, is like gold dust!!   

Andrew doesn't wake in the night much and so all the night testing is mine and all the fetching of water is mine too.  I do it gladly but it takes its toll on my 45 year old body!

I was trying to get more sleep but it's a false economy of the most awful sort to do what I was doing.  It wasn't terrible but I was failing Frank and needed that wake up call in the doctor's room to bring me back in some way.

I truth I still have that ball of fear but as we left that doctor's room that day I made a vow not to allow it to rule me.  

This takes effort every day on my part.  

Every single day and then every, single night.

Every single night that I medicate my child to the point of hoping to maintain his health and not go so far as to make his blood sugar go so low that he dies.

I factor in growth spurts, excitement, tiredness and evening snacks.

I factor in how exhausted I am and set the alarm accordingly. 

I hope and I trust the medicine and the pump.

And, truly, truly, I know that hope is the only way forwards.  

Other wise the dark ball of fear wins, and it wins every day.

So (I'm getting to the point in the title of this post, I promise!):

I CHOOSE LOVE!

I choose, every single day to look to the light and for myself and my husband and my beautiful, gorgeous boy, Frank, I choose love over fear.

*****************************************************************************
 My first act of choosing love was a little family adventure.  

We soooooo needed one!  

And so, on one of the snowiest days of the year so far, we headed off to London.  For three days.  

Staying in a hotel and everything!

And ,oh my, I fell in love with London all over again!

waiting for the train at Colchester North Station

chowing down at Wagamama's on the South Bank

Wagamama Man!

my love, up in the air on the London Eye

Frank enjoys the view of Westminster Bridge, The Houses of Parliament and Big Ben from the London Eye

I don't like heights!

the amazing roof of The British Museum

nothing Freudian about this dessert ... ahem

And so here I am in mid-February ready to begin blogging again.  

To choose the light and to share more of it here.  

I hope I have a few readers left and thank you for sticking with me.  

Much love.

xxxx

this boy

this boy is growing up

this boy has had a haircut

this boy adores Scooby-Doo

this boy is bright and full of energy

this boy loves stories

this boy loves to sword fight

this boy loves jacket potatoes ("jacket a-patoes")

this boy is artistic

this boy can mimic voices uncannily well

this boy loves "Almost Naked Animals"

this boy loves

And the week before last this boy was weighed at the hospital and his blood pressure taken, his HbA1c taken and his height measured.  

He has lost weight.

The hospital were telling me they are now officially "concerned".  I go home and Google "unexplained weight loss in children".  It's not pretty (no shit, Sherlock, right?) but he HAS NO SYMPTOMS.

He is fine. 

We are under the care of two separate hospitals for Frank's diabetes.  

One here in town for his general D-care and one in Cambridge for his pump.

They are both fantastic.  

We cannot fault them.

However, after a few days of calling one of them and asking for the latest blood test results so we could see if coeliac disease or maybe thyroid issues were at play here (and need I add that we were rather heavy hearted all that time), we were told that due to human error his weight was plotted wrongly on one of our previous visits and, whilst he hasn't gained much weight, has HAS NOT LOST ANY.

Good grief.  

That was four long days.

And on we go, taking it one day, maybe one week at a time.

This experience really highlighted for me the progress I have made in accepting diabetes, that uninvited guest who just won't bugger off, in our lives.

It is not the first thing out of my mouth when I meet someone.

I don't feel the need to blurt it out and I feel so much healthier for it.  

Frank is now of an age where he would possibly begin to feel "defined" by his diabetes as I blurt it out to new people anyway, when before now he was perhaps too young to take in what I was saying.

The one thing I am now very hot on though is not letting people get far in the "poor little boy, he can't have sweets" or "but he looks so healthy" or, as from my own bloody mother on the phone this evening (and on speakerphone no less, with Frank in earshot) "I suppose he'll go to school one day, but it's difficult with his (pauses to find the right word and then whispers it as though it is an profanity) "illness". 

Speakerphone was switched of smartly and mother's ridiculous inability to "get it" silenced for her grandson.

And on we go!

Hello July

Well, I fell off the Marauders' Map there for a while, didn't I?

Clearly I needed some blogging-free time and I have made full use of it, I assure you.  

We are all well here in my little family and life continues apace. 

Much growing has been done by Frank, much crafting and reading of Harry Potter to Frank by myself and much retiring from his main job and poetry gigging by Mr Muffinmoon (aka Fred Slattern, Colchester's Slum Poet).

We have a ten day trip to Denmark under our belts and spent two days of those at Legoland, much to Frank's delight.

I seems, also, that blogger have been busy whilst I was otherwise engagaed and I am struggling to work out what's going on here today!

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

I feel it will be impossible to fill all the gaps of what we have been doing in one blog post and so will concentrate on Denmark today.

We are a family with a camper van.  We have no other motor vehicle.  We walk and cycle or we drive our van around.  

Thus, for us, and considering I feel best when I am not in a tin can way up in the air and also when I can pack as much diabetes-related stuff as I wish, we tend to head for the Netherlands or Denmark or France or Germany or indeed stay home in the lovely UK for our trips.

This year, with a Lego fan in our midst who is turning six in a week's time (yikes!), we felt Denmark and Legoland over there was a good plan.

And, boy, was it fun, once we finally got there.   

And thereby hangs a tale:  waking up on the morning of our planned departure on the 5pm ferry I was getting Frank dressed and saw what looked like lots and lots of insect bites all over his back.  To the docs and the practice nurse confirmed chicken pox!!!   

This actually felt like a huge stroke of LUCK to me.  

Yes, really.

Imagine how it might be being already on the ferry or in Denmark and seeing all these spots break out.  The Danish are great at speaking English but I do not want to be fighting my D-Mama corner to doctors that might not understand me clearly.   We all know we are indeed the experts in our own child's care and that most doctors do not have the knowledge that we do.  

We are the specialists and travelling elsewhere can feel very much out of my confort zone should things go wrong.

Frank felt fine but we had no idea how many  more spots might break out and, more importantly, how having Type 1 diabetes might bring complicaitons for him.  So, we cancelled our place on the ferry, sat tight with the door closed and a skull & crossbones on it and waited it out.  

Frank continued fine.  

No more spots broke out and after a few days had passed we rescheduled and hit the ocean, heading north east to Esbjerg from Harwich.  

It is an 18 hour journey and so everyone has a cabin and we even enjoyed the fabulous buffet of smoked fish and fresh salads.  Yum. 

 And once there we camped for five nights, spent two nights in a pirate-themed room at Legoland, a night in a B&B and then came home much refreshed and, for me at least, needing a break from the strong coffee and smoked fish!

A few pictures for you all.  

A taste of Denmark.

 ~ Frank at the Ribe Viking Centre ~ I asked him to look like a "serious Viking" ~

 ~ smiley boys at Legoland ~

~ the best beach we found on the trip ~

~ the fantastic wooden castle and figures at the Ribe Viking Museum ~

~ and, finally, but best of all, the disabled toilets in the Hotel at Legoland ~ crocodiles in wheelchairs ~

Happy Sunday and happy July to you all.

Much love.

A Frank Update

This is Frank.
He has Type 1 Diabetes.
And he needs a haircut!

At the hospital this week Frank was weighed and measured and his HbA1c taken (7.7, up from last time but I am truly happy with anything under eight. So, even though I shall work even harder I am not unhappy with the result).
I had been concerned about Frank having lost weight after he jumped on the scales at home and seemed to be about 5 or so pounds lighter than I remembered from our last hospital visit.
So, at our appointment we looked at the numbers and the results of the blood tests were discussed and all seemed well.
I wasn't too embarrassed at having raised my concerns and was told that I had been right to do so. It does seem that our scales weigh lighter than those at the hospital but Frank is definitely looking slimmer, so I am pleased to have had my mind put to rest this time.
Anyone with a child with this condition will know that it is wise to keep alert to other changes as the chances of thyroid issues or coeliacs is higher in Type 1 Diabetics than in others.
I had convinced myself that we were facing a thyroid problem when in fact, at present at least, all seems to be well.
And I am so very grateful for the comments I received about this.
I found it hugely comforting.
Thank you.
*********************************************************
In other news I couldn't resist posting these photos from today as they really made me smile.
They illustrate something that I am aware of every day as Frank and I go about our days: we are wired differently.
We have been working today on making a board game to go into a story sack that were will be giving to another homeschooling family soon. Once we had done our game Frank got all excited about making another and so we did.
Well, I got the board ready with the numbers and then left him to create the game whilst I did some gardening.
Coming inside I brought some hyacinth flowers that were getting past their best and decided to make a spring garland for the front door.
So, I sat with my boy and did my girlie stuff whilst he made his game.
The contrast of what our brains love was wonderful!
I leave you to enjoy the pictures as they reveal our inner selves ...

And interestingly when I spellchecked this, the word coeliacs came up as cowlicks!
Cool.

Perspective in sad times

This time last week, almost exactly to the hour, we received a call from Colchester General Hospital to say that Andrew's Mother, Janet, was about to pass away and that Andrew and his father should head up to the hospital.
She had only been admitted the day before and during his visits to her over those two days Andrew felt she wasn't really there.
She was sleeping a lot and not very lucid.
He went to the hospital with his father to say goodbye and then returned home, sad but not devastated.
Janet had been ill and her quality of life has deteriorated a great deal over the past few months.
She was 81 years old.

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

The following morning Andrew was online and read the news about Ryan Schumacher, the husband of our dear friend Meri in California.
And there it was: a huge amount of perspective on our own situation.
Meri was one of the first people whose blogs I read when Frank was first diagnosed and her stories offered a great deal of support to me, all at sea with the business of managing the beast that it Type 1 Diabetes.
She helped me to be a proud D-Mama and to let nothing stop me from doing my best every day.
She is never anything but positive and supportive.
Meri is one of THE MOST IMPORTANT people in my life as the parent of a child with Diabetes.
For anyone new to the wonder that is Meri (and I am aware that most people reading my blog know her already!) let me say a few things:

Meri and Ryan have four great sons.
Three of their boys have Type 1 Diabetes.
Three, not one, three.
All the fear and hard work and finger pricks and hypos and hypers that Andrew and I deal with are dealt with by Meri and Ryan three times over.
How the woman has the energy to blog used to amaze me but I do now understand the need for it; the release that comes from putting those words down on the page and the joy and peace when comments roll in and people respond telling you they feel the same way.
Meri is always there for every other parent in the Diabetes Online Community (DOC).
She gives support constantly and asks for it when she needs it too.

*******************************
So, here it is:
last Tuesday, Ryan Schumacher, Meri's husband of 19 years, was diagnosed with six cancerous brain tumours as well as other tumours in his abdomen and legs.
He is 40 years old.
Talk about perspective.
Big time.

And as we plan Janet's funeral I am also thinking constantly about Meri and Ryan and the long and scary fight that lies ahead for them and their boys.
My Mum and Dad gave me some money for The Diabetes Society last week (they meant JDRF but can never get it right!).
I have sent it to the Schumachers.
It was the only thing to do.
I am telling this story here not to point out how great I am ( I am really not as what I want to do is jump on a plane to California and help somehow!!) but to ask any of you that might be reading to check out the Schumacher's story for themselves and if moved to do so, to contribute in any way you can.
It is very possibly the only thing to do.
Love to all.
It is a sad week but may we all find peace in our hearts.

Don't Look Back

Well, despite plans for an upbeat post about my personal goals for 2012 I found myself faced with the squat presence of The Diabetes Toad today.
I was cleaning out the fridge with Frank, who loves the emptying out bit but then disappears for the cleaning!
I took a moment to remove the photos adorning the fridge door and found The Toad, waiting for me as I took in the pictures of my boy on this piece of furniture in my home.
A piece that I go to every day, multiple times.
And my breath was knocked out of me.
Again.
As I thought, "He didn't have Diabetes then..... or then ... oh, that's the holiday in Cornwall, he didn't have Diabetes there either ... or when he was eating that apple there in that cute picture ... oh ... oh, hello Diabetes Toad, you're back for a bit are you?"
And so it goes.
I well up and feel like crap and hate this disease that takes over our lives as well as too much shelf space in our fridge and home.
And yet ... and yet ...
He lives.
We live.
It is hard, but looking back in this way only encourages the Diabetes Toad and he's too big for his boots anyway.
Let's cut him down a peg or two.
So don't look back.
Except in love and acceptance.

The Diabetes Toad lurks for all of us, I know he does, but these days I can give him a nod and clean out the fridge and get on with my day.
An example of this for this very minute:
the full-on life force of Frank has just manifested itself by running into the room with his winter hat on backwards, arms stretched out sideways and saying "Ninja!" (we have a bit of a Scooby Doo & the Black Samurai fetish going on, especially in the build up the Chinese New Year too!) At this display the Diabetes Toad disappears in a puff of smoke and life is good.
Life is sweet.

I end with a gratuitously cute picture of my boy, four years ago, in the bath, the spitting image of me at that age.
He didn't have Diabetes then either but that's OK.
Blessings and Toad-free days to all!

Recipe for charcoal cookies

Yup, I made them and they take merely four hours to bake.
Easy.
Here's how you do it.
Take all your usual ingredients for really good quality chocolate chip cookies: organic butter, soft brown muscovado sugar, spelt flour, Green & Blacks dark chocolate, organic eggs and so on.
Make two batches of these cookies and then let them cool on wire racks in the kitchen whilst popping the last batch in the oven for a quick ten minutes.
And here is where you raise your game from cook to kitchen genius.
Forget this last batch and sweep yourself and your family off into Colchester for lunch.
Meet D-Mamas and friends with D for lunch as part of the support group you help run and chat merrily away.
Order coffee, order falafel and salad, have more coffee. Stroll back to the van and drive home feeling great about knowing such lovely people.
Open the front door, smell the burnt fat and think "Oh, damn, I left the oven on".
Walk slowly to the oven and look inside, still expecting to see nothing in there, because really, what kind of fool leaves cookies for four hours!?!
Find this:

Slap your forehead and know for a fact that you are the biggest muppet of a cook since the Swedish chef on the Muppet Show and spend three days trying to get the dark stains off the tiles and the smell out of the house.
Put the cookies in the bin outside, because even the compost would surely be poisoned by this travesty.

Happy eating!

Making & Hiding Out (d'you see what I did there?)

tea cosy for my sister for Christmas

Frank making golden bicycle wheels at our little class "Art Makers" at the new gallery in town : firstsite.

my tiny stash of very special material made into a little clutch bag, which I am using for small knitting projects. Note the reality of my crafting and do not for a moment imagine I have a "studio" or anything! Nope I craft right alongside the Lego and the puzzles.

updating the nature table with gnomes and gingham hearts from the Christmas decoration stash

Budd making a fabulous shed in the garden, he has worked really hard all week on this, whilst I have worked hard to keep Frank out of his way

Me, making a golden bicycle wheel, taken by Frank

********************************
It has been busy around here with us making, building, creating ...
I finished the tea cosy for my sister for Christmas and am now making very few things for gifts. I made loads last year and it stressed me too much. Crafting and creating is something I do a fair amount of but I want it to kind of unfold naturally. I don't want to be handing over a gift that is only going to receive a lukewarm reception (it happens A LOT!) after I have sat up late trying to complete it. So this winter it's just a tie for Budd, a cowl for Frank and a couple of other gifts before I just knit for pleasure alone.
And next year I have already declared the year of knitting for ME!
That is going to be fun.
This week Frank and I enjoyed our second art class at the fantastic new gallery in Colchester: firstsite.
And Andrew has been spending the week building a shed in the garden; leaping out of bed once it is light and beavering away until it's dark.
He has done an amazing job.
******************************
And onto the hiding out.
I have kind of been ignoring Diabetes Awareness month and not blogging about diabetes.
I think I have reached one of those phases of burnout and am just going with the flow.
In planing what to say here today I wondered if I should admit this.
A great deal of awe is felt here by me when I read other blogs, especially this month.
My stamina seems to have gone AWOL for November!
And, guess what, I wish it hadn't but I feel absolutely no guilt about it.
If I have learnt anything from this carousel of parenting a child with Type 1 Diabetes it is to trust my feelings and emotions and gut reactions to life and my moods.
I appear to have needed a quiet blogging month.
It certainly isn't all tea cosies and soup over here.
We have too many hypos and some ratios that have needed tweaking.
But the nights have been comfortingly predictable (for the first time in about nine months, I realised the other day! Jinkies! No wonder I look 93!).
********************
And this much I know:
Even when I lapse in regularity in my blogging.
Even when I am a bit lightweight with my post contents.
Even when I can barely function of an evening.
I feel the energy of all the other D-parents and D-friends out there.
Not in a weird way, just in a supportive way.
And I know that should I need to reach out, even after an absence, everyone is still there.
Just as I am.
Still here. Still there. Still reading.
Still Frank's Mama.

At Daymen's Hill Orchard

A few days ago Frank and I drove out towards Tiptree for a new adventure.
My friend Sue had told me of a family run fruit farm where you can pick your own apples and pears.
Moved to action by the evocative postings of some blogging friends in the US I wanted a little apple picking action of my own and in this Frank was a very willing partner.
It was just so very lovely.
The trees were groaning with the fruit and I filled a basket with pears and one with apples.
Notice Frank's stance here? He quickly adopted a defensive head-kind-of-down stance after being hit on the bonce one too many times as he pulled the fruit free.
This fruit was so very ready to fall it needed little encouragement!

Then he sloped off to eat blackberries direct from the bush whilst I paid and dreamt of all the yummy things I was going to make with all that fruit.
I so love autumn and it's days of plenty and those first signs of people lighting fires and wearing socks and scarves.

******************************
And in the D-news we were at Addenbrooke's hospital for our quarterly pump clinic and check up and came away with some new ratios and some big smiles : 7.3.
Holding steady.

The blanket I knitted to relieve D-stress!

May I introduce you to this lovely little number?
It is a small blanket, perfect for having over your knees on a cold winter's evening or at the open air theatre in summer.
Or even for carrying around with you, Linus style, when your D-kid is ill!
The pattern is Hap Blanket by Ysolde Teague and is my first real attempt at lace knitting - Ravelry notes here.
I knitted the whole blanket on our holiday in Holland (and even made a baby hat for Frieda too!) which gives you some indication of how relaxing a holiday it was and how much I needed to keep myself quietly occupied.
Basically the centre block is garter stitch and then you pick up around the edges and knit the lace.
This is my sister's Christmas present (along with a tea cosy, which I will show you once it's finished) and these colours are very much her thing. Heather doesn't read my blog so I think I am safe in showing it off here (if you are popping by Heather, um, Happy Christmas!).

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

This knitting was just what I needed after the week before the holiday when Frank was ill.
I am aware that I am not writing about the D much at present.
Believe me it's always there and has been challenging recently.
I was completely wrung out before the trip to Holland as Frank had had a fever for three days and then diahorrea for four days and continued to be low on energy and not really eating when we packed the van and headed off to the ferry port.
I had been in two minds about whether to go or not but we had discussed it and felt that he was on the mend and they have hospitals and doctors and medicine in Holland after all!
So, we went and after a couple of days he perked up, started eating like mad and was fine.
Again, it comes back to the idea of getting out and just going for it and yet this is such uneven ground.
We were not taking a regular healthy child away, we were taking a child WITH DIABETES away and it was scary.
We are three years in to this bloody game (anniversary if diagnosis next Monday, in fact) and it does not get easier to make decisions like this one.
In all honesty though, I did make this decision knowing, absolutely knowing, that I would be able to make better calls regarding Frank's health than pretty much any other health professional and that I wasn't afraid to tell people what to do, should it come to it!
I am D-Mum, hear me roar!

Hide and Freak

When I realised that I was going to use that title for this post I had a feeling that any D-parents reading would immediately have a clear idea what it would be about and had probably experienced it at some point.
It was one of those experiences that so many wonderful bloggers have mentioned before where the true, true reality of your situation really slaps you back in the face.
You have been cruising for a while, getting on with the BG tests, the pump site changes, the lows and highs, the nights and the days and even sometimes daring to feel like you are living a regular life (Ha! Right?!) and then something happens that makes the ground shift, and things fall into a different focus, and reality bites.
Frank and I were at my friend Helen's house for our monthly home ed meeting and the kids, as always, were having a ball racing around together, only calling into the kitchen for snacks and hugs.
They decided to play Hide and Seek.
They do this every time and have fun in Helen's lovely garden, hiding near the chickens or behind the shed.
This time was fine apart from the moment when they all seemed to begin playing another game and I happened to hear one of them mention quietly that they hadn't found Frank yet.
***********************
My adrenal glands leapt into action and I felt a kind of little jolt inside me.
I checked again whether they had found Frank yet and they confirmed that they hadn't.
It was 12:15.
Lunchtime.
Yes, he had had snacks but he had also been racing around lots.
I put my coffee down and headed out to the garden to find him, thinking he'd just hidden somewhere they hadn't yet looked.
I looked everywhere outside.
I called him.
I told him the game had finished and he had won.
Nothing.
I looked inside the house. I called again. I went outside again and called.
Other parents now joined me and called and looked and called again.
Quietly and in my British way I began to panic. I sounded calmer but my friends saw how set my jaw was and how my eyes were darting all around.
The film running through my brain had Frank passed out and fitting.
I welled up, ready to cry.
One of the children mentioned then to his Mum that Frank was "under a table".
We all checked again under all the garden tables and then finally, finally I saw Frank's trouser leg under a side table in the lounge.
He was conscious, and smiling, and wondering why it took everyone so long to find him.
My knees felt weak.
The tears began to come but I managed to sniff them away.
Frank was so pleased he had won the game.
Then Helen said "Are you OK?" and all I could say and feel was "Yes, but scratch the surface and it's always there, always".
***********************
And it is, isn't it.
Some days we can feel almost carefree, but scratch the surface ...

Look Out, Look Out, There's a Dragon about

One of the reasons for my absence from this space over the past couple of weeks is that I have been beavering away on a dragon costume for Frank for the Colchester Carnival that took place this weekend.
I try hard not to use the computer during the day when I am with Frank so I tend to write in the evening.
Well, over the past two weeks all my evenings have been spent getting ready for Frank's birthday last weekend and for the dragon this weekend.
I am ready for a rest and for a couple of weeks of no deadlines like these!

But it was so very worth it.
Frank had a ball roaring at his friends, most of whom were dressed as knights, and chasing them at speed around the Abbey Fields before the procession set off and he joined his Daddy on the trailer bike.
Andrew had kitted the bike out with a little castle for the dragon to live in complete with windows for him to peep through.
It rained cats and dogs all day.
Downpour after downpour and yet it stopped just for about an hour and a half, and that just happened to be the hour and a half that we were walking through town in the procession. Serendipity indeed.

We have been really struggling to bring his blood sugars down over the past month. We are rarely seeing anything under ten and I am not a happy bunny with this trend.
But, last week we had pump clinic in Cambridge and his HbA1c came back as 7.6.
Holding steady.
Not as high as we thought it might be. We were relieved.
Numbers were crunched at the clinic and we adjusted some ratios and now we try to bring those numbers down.
It is relentless (but I don't have to tell most of you that) and I don't like winning often enough, but hey ho, it is what it is.
I hope to be here more often very soon.
I miss ruminating on life to my small (but, surely adoring) public ... ahem.

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Loving all your posts, will find time to comment as soon as I can.
Love to 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.
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You Can Do This because many others do it too.

And they are not superhuman.

Just parents and carers.

You are not alone.

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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.

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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.

this week

This week

• I am admiring the third Milo vest I have completed, this one is for baby Ruben's first birthday. He is one in October and I can't quite grasp that I have this ready in June! Andrew's Christmas jumper is still languishing in the knitting basket. He might get it for his birthday in August. Or next Christmas ...
  

(this is an owl cable, can you see why?)

• I am working hard to get on top of the spread of toys and laundry around the house, hoping to get things cleared enough to think straight when Andrew goes away for eight days very soon.
• I am loving the Frank's-eye-view I get whenever he borrows my camera and pads around the house capturing his world.

in our bathroom, which is the Sea Room, part of Frank's "My Museum" that takes up the whole house (complete with whale sharks and "sea dinosaurs")

• I am pleased to have found time to watch "The King's Speech" and loved it. The only strange moment that had Andrew and I laughing out loud was seeing Tim Spall being Winston Churchill. I am a big Tim Spall fan and his face was almost too well known to be Churchill. I felt that by then I had already accepted far too many well known faces as other people to take anymore. Mr Darcy is Bertie, Duke of York? Bellatrix Lestrange is the Duchess of York? Elizabeth Bennett is now married to Jeffrey Rush, the ghost pirate? And now Peter Pettigrew is Winston Churchill! My brain was melting with all the cross-referencing!
• I am finding joy at rediscovering an old habit; that of knitting whilst watching flickr slide shows of my favourite creative bloggers or photographers whose work inspires/relaxes me.
• I am loving the full-on rain we have had. Our crops and gardens SO need this. Farmers around the country, I am sure, are breathing sighs of relief.
• I am battling BG numbers in their teens and a boy who scarcely eats a whole meal but wants to graze. Grazing is good but hard on the D-parent sometimes,
  
• I am still shocked at visiting my parents and going with them to their local supermarket to witness my nearly 80-year old mother take a small and very sharp serrated knife out of her handbag. She then proceeded to chop the stalks off the broccoli she was intending to buy. My gasp of horror led only to her explaining what she was doing and saying that as she didn't eat the stalk she didn't want to pay for it! I now await the knock on the door as the police arrive to tell me she has been taken into custody for WALKING AROUND WITH A WEAPON IN HER OLD LADY HANDBAG.
• I am really pleased with myself for chatting to the manager of Starbucks in town and securing the Community wall for a little exhibition of photos I want to put up called "The Face of Diabetes". The idea is to counteract the ongoing struggle we seem to have to make people recognise that Type 1 diabetes is not the same as Type 2. That wall is mine in November! Just have to get myself organised, it could creep up on me. Thanks to Jen for motivating me to do this. I'd had the idea for a while but just hadn't done anything about it. Then the day after I did this we had a new TV ad here in the UK about going to local pharmacies to get yourself tested for Diabetes. Not Type 2 Diabetes. Just Diabetes. Well, the Type 1 D-parents and D-adults swung into enraged action and the ad was altered with a message along the bottom of the screen saying something along the lines of "Type 2 diabetes only. Not for you if you are under 16 or have already been diagnosed with diabetes". The D-Community was absolutely right to swing into this action not just because of the lazy labelling and consequent emotional pain and possible medical confusion caused but also to raise awareness of diabetes and its complications there has been a sculpture of LIMBS in Trafalgar Square as a shock tactic. What four year old Type 1 diabetic doesn't need to see a pile of limbs as a warm-hearted message about his condition, eh? (That was a sarcastic, rhetorical question by the way!)
  
• I am mostly wearing cardigans and my clogs. And channelling Jesse from The Fast Show. (Just look for The Fast Show on You Tube for it. It's all good! I loved this show.)

Happy Weekend to you all!

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!

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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.

Scenes from Devon

We spent a windswept and cold week in beautiful Devon.
No trench foot but oh, so much wind. And, as we were camped on a west-facing hill, looking out to sea, from whence a MAD level of wind was howling, it was a challenging week.
My gorgeous tent is lovely and looks great but is not much use in such circumstances, there being no inner tent. The wind whipped the sides up as much as it could and others on the camp site lost tent pegs forever, returning to camp at the end of the day to find their tents in heaps and looking wildly around for sheep with Frankenstein's monster-type tent pegs through their necks.
After two nights we resorted to taking turns to sleep in the van with Frank and oh, the joy of just turning a light on to test BG during the night, rather than holding that torch in your mouth.
I took a few photos but spent also a lot of time with my hands in my pockets feeling grumpy. Andrew assures me I am rarely grumpy so I imagine ten years of teaching teenagers has made me proficient in hiding my true emotions!
A few piccies for you all so those of you across the pond can feel all worldly and knowledgeable about the UK ...
Setting up on day one.
We left at 8am and arrived around half four in the afternoon. Strolling up to the office to check in Frank flopped to the floor with his lowest hypo yet : 2.0.
Great. A week on a hillside and we begin by checking in and dealing with a major hypo simultaneously.
And look! Blue sky. Last we saw of that for a while.

On our way down the hill to Hope Cove.
That, my unworldly American friends, is a Devon ROAD. Yup. It's a road. Two way. All that green hides a wall made of flinty stuff (that's the technical term by the way, ahem) so if you misjudge it in your car, or say camper van, you lose bodywork. There are passing places but that then involves driving backwards uphill or downhill and not hitting the aforementioned flinty-stuff.
Keeps you on your toes, believe me.
I would so love to be a passenger in a car with an American driving down this road! Dan and Winnie, I volunteer you guys. Are you up for it? Detroit is easy, you need a challenge!

I loved this sign, all bent at the edge showing how someone hit it on the way past! And the wild flowers all the way down the lane were amazing.
The first few houses as you enter Hope Cove.
Hope Cove and a windswept boy. Both beautiful.


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And then there were days of wind and rain and more grumpy thoughts from me.
On what was to be the penultimate might of camping it was Andrew's turn in the van with the boy.
I tidied up the tent. Made a comfy bed. Got my knitting ready. Got my book out. Lit the gas lamp without losing any eyebrows and settled down for some space.
But, that bloody wind. It picked up and buffeted that poor tent to the point that I got smacked in the head by the canvas so many times that by half midnight I lit the lamp again and read. Until three thirty and I was too tired to read anymore. After that I slept fitfully, off and on, dreaming of wild panthers (The Beast of Bodmin Moor had come to Devon and was in my tent!).

I joined the boys in the van. They were sleeping well and still happily in dreamland. I made myself a cup of tea and sat drinking it, feeling mutinous and very sorry for myself. Then there appeared a little way off but clear enough for me to see a group of three crows. Two of whom proceeded to peck the other to death.
Great. Lovely sight.
I have read enough Shakespeare to take this as a very clear and portentous sign to get the hell out!
And so, we packed up and went to a B&B for the night and oh, the joy of no wind. Electricity! TV! A bed without bugs! The wonder of it all. I felt like The Man Who Fell To Earth (didn't pee myself though, you'll be glad to know!).

And I smiled to be packing up and loved my husband more than ever for being adaptable.
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Back very soon with a call for help with my used-to-eat-anything-boy now being a mono-diet-boy. I am floundering with feeding him.
Little monkey.