Hate and Love aka Sir, the dog ate my homework

Oh, no, no, no!
Blogger was down and in "read only" mode yesterday just as I managed to get the sprog to sleep and onto the laptop.

I am not as lively of mind as I was last year taking on this week-long challenge and am really tired this evening. Tomorrow morning is our Circle-D families with Diabetes support meeting and I need to get to Castle Park by ten so I am going to attempt the ten things I hate and today's topic in the one post.

Hope that's OK with you guys!

I try not to think of hating diabetes but, in all honesty, I do. It's a bastard.

So, here we go:

Ten Things I Hate About You Diabetes

1) You are a thief. You stole so much from me. I was so full of hope when, against the odds, I found out I was pregnant, so late in life (well, at 39 anyway!). You stole my chance to be hopeful, to believe that doing "the right thing" by my child would be any kind of talisman against the worst that life can throw at us. You stole any chance of a carefree life for my little family.

2) You are a cheat. I hate that you have rules but you don't even pay by them yourself. Dealing with you is a full-on mixture of art and science.

3) You are a bully. You have forced me into sobbing submission many times, mostly through lack of sleep but sometimes when I allow that window in my brain to open (it is normally sealed shut) and the big picture of complications and my baby's whole life being dominated by you hits me like a wet kipper across the face.

4) You are anti-social. You make it difficult to forget anything but you at times. Whatever we are doing and wherever we go BG must be tested, insulin must be given, carbs must be counted and I must stand like a creepy carb and insulin-wielding vulture on the sidelines ready to swoop on my child at any moment.

5) You are an attention-seeking creep. I can't even finish a blog post without having to stop, save and go upstairs to test my boy's BG. Back in a mo .... just time to test Frank. 8.7, and breathe ...

6) You are sadistic. My little baby's little fingers are like leather and are totally pock-marked by all the many finger pricks every day. His bottom is covered with red dots from injections and now pump sites. This will never end. His skin will always suffer. He will endure daily pain to stay alive.

7) You make it complicated. I cannot just take my boy to the beach. Throw in a towel, shove in a drink and a sandwich and drive carefree and laughing to spend the day running around and picking sand out of our food. Oooooh, no. We have to carry so much bloody stuff: diabetes kit, extra insulin and syringes, juice boxes and various glucose tabs and snacks for possible lows, phone for emergencies etc etc etc.

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I did finish this post.

I was witty and it took me two hours.

My laptop is playing up but I went for it.

And then I lost the rest of it.

Swore in a most unladylike fashion and stomped off to bed.

At the end I did the things I love.

They were mostly you guys.

Over and over, you guys.

Also the fact that diabetes has made it abundantly clear who my friends are. Some have disappeared entirely, such as the one who regaled me with tales, loudly and just outside the library, of her wonderful sex life with her new partner whilst managing to ignore my child in the buggy and to avoid even asking after him. He had been diagnosed only six months before. Un-flipping-believable!

I should also let you all know that I am going to bow out of the rest of the Blog Week this year.

I am only managing to get Frank to bed at half nine and with Andrew away I am the only one here with the responsibility for the testing at night and all day.

I'm weary.

I need to sleep and conserve my energy for all the absolutely fascinating discussions about whales and farts that fill my days!

Forgive me.

I am still reading what everyone else is writing and will comment.

It is such an amazing and intense week and I shall leap in again next year.

Lots of love to you all.

My Biggest Blooper

Thank you all for you sweet comments yesterday. I am always so buoyed up by hearing from you.

Today's topic is bloopers and I have remembered my worst one.

It is fair to say that I tend to be more organised than my husband about taking all the kit necessary out with me. The bag I carry is huge and it's generally full of D-kit, juice boxes, water, snacks, wet wipes, tissues, camera, purse, phone, hand cream, pens etc.

I am also sometimes a bit short-tempered with my husband about not being organised.

However, one day I took Frank along to a music class. I parked and we went in. Halfway through the class Frank mentioned that he felt "wobbly". I calmly reached into my bag for his kit and kept reaching. I rummaged, I went from feeling for it to looking and then realised that I must have left it at home, a good ten minutes drive away.

Shit.

I didn't let him see my panic but did have enough juice on me to just deal with it anyway.

I spent the rest of the lesson feeling like a failure and tested him as soon as we got home. He was fine but at a number that indicated I was right to just give the juice anyway.

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Does this even count as a blooper? I cringe to read it as I can't believe I did it.

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And another little anecdote with hubby taking centre stage this time (he's away in Scotland and so won't see this for a week! Wa ha ha!).

When Frank was newly diagnosed he had a hypo in a cafe just as we all sat down to eat. We were so very new to it all we weren't yet in the habit of having juice on us, and multiple boxes at that.

We were such rookies.

I realised Frank looked glassy-eyed and tested him. He was low. We had no juice so I asked Andrew to run up to the counter and get juice really quickly.

There was a queue.

He joined the end of it, in true British fashion; he just didn't want to jump the queue!

I called out to him to jump in and explain later.

But he couldn't do it.

I ran up to the counter, apologised and asked for juice really quickly, explaining that my little boy needed it as he was experiencing a low blood sugar problem and I'd be back to pay later.

Frank drank the juice, felt better then went to sleep.

Poor Andrew looked crushed but in all honesty, I don't think he'd do it any differently if it were to happen again.

It's just who he is.

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I know these don't seem funny and will probably recall something hysterical as I am brushing my teeth in a couple of minutes.

If I do then I'll post it very soon.

See you tomorrow.

My Letter to Frank - We are in this together

Dear Frankie,

Our little team of three have been working on a project this weekend and we saw it completed today.

Each of us did something towards its completion and each of us will get a lot of pleasure from watching it all grow and develop.

You will get to eat some of it, we hope!

Daddy recently cut down our hazel tree to make more space for growing veggies. OK, OK don't make those gagging noises, you won't have to actually eat the veggies. Mummy and Daddy will do that. Now get up off the floor and let's get on with the letter.

We used lots of the hazel branches this weekend to make a kind of yurt. The idea being it would be fun to sit inside and if we grew peas up it, you could indulge in your love of shelling peas and eating them raw.

So, your main job was to use the secateurs and trim all the small twigs from the branches.

You did a great job!

Daddy's job was to make the yurt structure and tie it all together so that it's strong and can withstand the gusts of wind it will no doubt receive. He also cut chunks out of the lawn.



Today I finished the project by planting out all the pea seedlings and watering them.
Then I made some bird scarers with twigs tied together and suspended from the top of the yurt and also by tying some old CDs to the frame.

Now we wait and water and tend and scare the evil birds away.

And hope for a harvest.

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And the analogies with dealing with diabetes are clear to us all.

This is how we do it, Frankie.

We all play a part.

At the moment my part is the largest, Daddy's the second largest and yours the smallest.

And yet these roles will shift and morph as the years go by. Sometimes, even now, you want to press the buttons on your pump and I can see glimpses of your understanding of the vocabulary of D.

Daddy and I will always be there to help you manage your diabetes and your life, in all the glorious technicolour that we hope it will entail.

When your are an adult and need a break from it all or have a fever we will be there to take control for a while so that you can concentrate on just being.

My heart beats for you, Frank (even though right now it is 9pm and you are being a pain by not going to sleep and not staying on your bed and shouting at me about a poo on my head - yeah, Waldorf Schmaldorf -and I am emotional enough as Daddy is going away tomorrow for 8 long nights!!!).

Ahem ...

You and Daddy are my smile.

We are all so very lucky that diabetes is manageable. It might be incurable but you can live a fantastic life WITH DIABETES.

And I intend to make that happen, to the best of my ability, for all our sakes.

I love you, honey.

Mummy

xxx

D-Blog Week - Admiring Our Differences

I am struggling this week.

It's not the D, it's just me. I seem to be walking through treacle and can't get a grip on things.

However, I have decided to have a go at Diabetes Blog Week as it was such a positive experience last year and hubby is away again (cycling through Scotland for a week).

So, thanks again to Karen for organising this all over again.

Maybe blogging each day will shake me out of my brain-fog!

Every person dealing with diabetes in their life, either as they have it themselves or they care for someone who has it, has something to teach us all.

We are all learning every day with every carb counted and in every situation.

It can never be taken for granted.

I stand in awe (well, generally, I sit on the sofa in awe) of the D-parents whose blogs I follow. Mostly I am in awe of how they manage to be so witty and "together" on-line when I know they must be feeling as knackered as me!

There is much to learn from others with D.

So very much.

There is beauty and sadness and there are tricks and ideas.

There are breathtaking photos and poignant ones too.

There are coping mechanisms and sympathy.

But most of all there is humour.

Without it none of us can survive and remain sane.

It is the only way to live with the day-to-day reality of having a child with diabetes.

You have to smile and laugh and see the dark, and sometimes downright black, humour in it as often as you can.

And I am so very grateful for you all.

On that note I leave you with some links to hopefully make you smile:

this always has me snorting out loud, rather unglamourously

This guy too, love him and how he performs and thinks

and this is my mantra, when days are long and hard and nights longer

See you tomorrow...

Dream a little dream ...

When Frank was twelve weeks old we took him to mainland Europe for three months in our camper van, doing a mixture of camping, hotels and staying with friends as we visited Denmark, Germany, Poland, the Czech Republic and the Netherlands.

It was an amazing trip.

He was totally portable and I was breastfeeding.

I had been informed by the medical profession that we could never have children naturally (long story).

I was thirty eight and trying to resign myself to the fact.

I wasn't doing very well at that.

In the Autumn of 2006 I kept feeling so tired that I would fall asleep every afternoon after teaching in the morning.

I was convinced I was ill and joined a gym to get some energy back.

At eight weeks pregnant the penny finally dropped and I took a test.

I sobbed like a mad woman when it came out positive.

Took another and cried again. From that moment I was so full of the sheer joys and possibilities of life that I felt invincible.

I had a fantastic pregnancy and Frank was born without problems.

I felt proud I'd only needed gas and air, especially as he was 8lbs8oz , although I admit they had to prise the gas/air syphon thing out of my hand!

Then when we got home from our great trip my husband suffered a kind of long period of depression, which took a huge toll on me as a new Mum. He couldn't function some days.

It was like having two babies.

Horrible for both of us.

Then he turned a small corner and started to feel better.

A month after that Frank was diagnosed with Type 1.

Forgive me but I cannot dare to "dream a little dream..".

I try to never actively think about the idea of a cure. It is like wishing for the moon.
I will do as much as I can to support research into finding a cure.

I have to use my energy keeping my boy alive and healthy.

It is 21:39pm. Frank sleeps. He has just gone too low in his sleep, no doubt the results of a lovely time out in the woods today. He has had juice.

A cure? I don't dare imagine.

BUT I was told categorically that I would not have children ...

I have a kernel of hope but cannot write about it yet. Too raw. Too huge. Too painful.

I am so lucky to have this amazing little boy in my life, whose energy and diabetes make me a better person every day.

I have had an emotional week this week, the Diabetes Blog Week coinciding with my husband being away.

Writing about diabetes every day has weirdly done me good.

It has forced me to examine my feelings and I find that I am stronger than I thought.

I have met new friends and gained new insight into dealing with this condition.

I have felt a bit abandoned on the one hand but then also SO VERY supported.

With a full heart I thank you all for an unforgettable week.

Let's Get Moving

Looking through my photos for pictures of activity I was happy to find loads. This one is of Frank running through the Autumn leaves after our three monthly check at the hospital. We park at a local Country Park and run around a bit before and afterwards.

It works for all of us, for me in terms of finding balance, and is a five minute walk to the hospital.

We are a family with about six bikes, maybe seven.

Strange to not know the exact number, you'd think? But some are in states of half repair and some are just about hanging together.

Some we use every day.

We walk and cycle most places in our town.

When we drive we take our camper van.

We do no formal exercise. No gyms. No classes, although yoga for me is coming up soon.


Frank always calls "race you!" whenever we go anywhere and we have to race to the next lamppost or postbox or corner. This is him in Brittany on Christmas Day. He and I went for a walk whilst Budd cooked the lunch. See how far ahead he is. He is FAST!


We munch apples and eat oatcakes on walks to keep levels steady.

We make up stories as we walk or Frank finds a good stick and does some magic with it, turning us into different animals so we have to flutter like butterflies or oink like pigs.
(For those of you reading this and imagining this three year old walk everywhere, rest assured, he gets carried a lot too!).

We go out and about as much as we can, visiting farms ...

and beaches.

And more beaches.

I am aware of how important a fit and healthy body is for people with diabetes. I want to set Frank up for an active life and here in the UK we are able to walk to town, walk to the local shops, walk to the library and we do it all the time.

However, there are also days when I am tired and cannot race Frank very fast.

There is space for improvement in caring for myself.

That's the bit I find hard at the moment.

To carb or not to carb

Ah, yes, carbs, carbs, carbs...
We count them and we measure them and we guess them and we still get it so very wrong and sometimes whoopingly right.
I work hard at not hiding the carb counting from Frank but also not overloading him with the issue. I do it discretely and he is showing a little interest in it all sometimes. It will develop naturally.

I don't forbid any foods and it took me a while to realise that when I was saying no to certain foods it was because I would have said no anyway, diabetes in the picture or not.
For a while I had lost the Mummy I had imagined I was going to be and thought she had to be replaced by D-Mummy.
However, I think she is one and the same person.

Some of the things we do:

Licking the spoon from making sunflower seed clusters.
I timed making them to coincide with snack time and included them in the allocated carbs.

The face of a flapjack happy child! Again licking the pan was his snack and I left enough mixture in it to be around the right amount. Doing this so reminds me of childhood and I do not want him to miss the experience just because his pancreas didn't pull the drawbridge up in time!

Licking spoons is important.

Snack laid out in the afternoon. We shared this one.

Smoothie Sunday: frozen berries with yoghurt followed by toast wth almond butter and Marmite. His favoured spreads.

Getting breakfast ready. He loves these flakes and has them with goats' milk.

I am lucky he loves his meat and nuts. He is essentially a cave man and has recently taken to demanding "meat with bones" at which he gnaws like a neanderthal! As a recent ex-veggie (pregnancy brought on cravings for roast chicken after 21 years in the lentil zone) I have to look away, still uncomfortable with the sinewy aspects of meat.

He chooses to fill up with protein and eats carbs in quite small amounts, except at breakfast.

I cannot imagine living any other way now.

A heartfelt P.S to all of you who posted your kind comments yesterday. I had a hypo to deal with at 10:30pm but the night went well and I gained so much strength from not feeling alone.

My biggest supporter

Look at those eyes.

Those are caring eyes.

My best friend helps me cope with it all and we do it as equally as we can.

He is off hiking in Scotland today and away for a week.

I am alone with this but as my biggest supporter he deserves a break.

My break will come another time.

I love this man.

P.S. We had a bad night with little sleep as Frank was high and wanting me to be in his bed with him. We did everything right yesterday but he had a hypo of 2.6 and them a high at 3:30am of 19.4. What the ...?

I cried, again.

This morning all was well and good numbers arrived. Budd left for a week in Scotland and barely three hours later Frank and I are eating lunch and he looks at me and says, "Mummy, I don't want to die. Then I won't be with you."

More large, hot tears as I tried to hide my exhaustion and fears of doing this alone. How can there still be tears in there? I must be practically dessicated by now.

Any advice on how to manufacture feelings of Mama strength in times of need?

I'm thinking chick flicks and green tea (no glass of wine for a week in case I need to drive to the hospital).

Knitting too and Natalie Merchant's new album, which serendipitously (get me with the long words) arrived in the post this morning.

Other ideas much appreciated.

I know you all get it. Live it, in fact.

My thought s are with all parent of Type 1 children more than ever today.

Making the low go

By coincidence we had a scarily low low today of 2.6. Out came the apple juice. We had been with Frank all morning in the garden and he pretty much always lets us know if he's "wobbly". This is the word I seem to use when I mean low blood sugar. We talk about "hungry" and "wobbly hungry". He is only three so it kind of works. Maybe when he's a hulking great sixteen year old (please, let him become a hulking great sixteen year old!) we will need to find new vocabulary.

I don't have a picture of a juice box but figure my target audience, more than any other item in their cupboards, will know a juice box. Juice boxes are just the Clark Kent of my pantry. Unassuming in their beauty but there for you when you need them. I tend to buy mostly apple juice so here is a photo of a pretty apple with a heart in it.
When we need to deal with medium lows we use these baby weaning purees from Ella's Kitchen. They have 12g carbs and Frank did have them when he was weaning. We now call them squeezies and they are quite the treat (amazing how a bit of careful PR can do wonders). They contain fruit and vegetable puree mixed so I figure he's getting some squash and spinach or whatever at the same time.

Then we sometimes follow up a low with an oatcake with nut butter or a small piece of toast or a biscuit, such as this one fashioned to look like Graham Coxon (local boy done good, click on his name there to see how yummy he is. A less seedy-looking Jarvis Cocker!).

Frank comes round fairly quickly and tends to need a hug. We try to never show panic or freak out in front of him. He needs to be under the impression that we know what we are doing.
HA!

(In case anyone was wondering, I have just learnt how to do links properly! Woo hoo! Brace yourselves for more coming up and if you need a smile and like Star Wars watch this one!)

A Day in the Life

Today is my first post for Diabetes Blog Week, the brain child of Karen at Bitter Sweet.

I am grateful for the focus as hubby goes away on Wednesday for a week hiking in Scotland. Normally he goes for two and a half weeks but with the new regime and Frank's young age it felt better this year to make it a shorter trip.

So, a typical day for us:

Somewhere between midnight and 6am I rise to go to the bathroom. This visit is guaranteed by my drinking a whole pot of green tea every evening because a) it's probably good for me and b) I want to check my baby is breathing.

I change his nappy, stroke his hair, allow myself to breathe and go back to bed.

6am-6:30am Frank calls "Mummy!" at the top of his voice as he wakes and I bury my head under the duvet for a few more seconds. He pads in ,bringing toys that we have to include in our game of his devising.

We all cuddle and tell each other we love each other.

Sounds schmaltzy but we do.

Life is precious and our link to it seems tenuous with the Type 1 fairy loitering around.

7:30am We all get showered, dressed and make our way downstairs. A BG test and then breakfast which is followed by CBeebies (children's BBC) as we inject the Novarapid and the Lantus. We find that having the TV on for a few minutes helps keep him still as we inject. If we are both at home we have developed a kind of pincer movement where we inject a buttock each! Synchronised insulin injections! Otherwise I just talk loudly about what's going on on Bob the Builder or whatever and he is young enough to be distracted.

The rest of our days vary according to who is home or at least with Frank. I gave up teaching at Christmas and Andrew works part time so we are able to share to diabetic load, so to speak, equally. Some days Frank is at pre-school and so I go and test his glucose and give him his injection there.

In between meals there are snacks of around 15g carbs.

At dinner time we eat early, between 5 and 5:30pm. Frank is tested and injected after he has eaten as he is so young we never know how much he might eat at any given meal. To give an idea of how much this varies, for breakfast he eats like the proverbial king with cereal, milk, toast, fruit and sometimes yoghurt too and needs what feels like an HUGE bolus. Also, his growth hormones mean that his ratio for morning insulin is higher than later in the day.

In the evening he might need a third of the insulin of his breakfast bolus.

He has a snack at bedtime and I check his glucose at around ten most evenings. Some evenings I am so convinced I got it right that I let his fingers rest. Most evenings I need the proof and reassurance and so I test.

My gut tells me what to do.

Our fab diabetes specialist nurse and I disagree on the nature of this condition.

I feel it is an art getting it right and she feels it is a science.

It would be a science if at any given point we were in the presence of all the relevant facts.

That seems impossible as the body is such a delicate and finely-tuned entity.