Virus alert

I am not sure about you, but to me it feels as if the world is holding it's breath and waiting for better days. A lot of that hope is focused on the development of a COVID 19 vaccine that will allow us to become immune to this devastating virus. 

And it seems possible and probable that the medical community will be able to pull that rabbit out of the hat soon.  Or is that wishful thinking?

I have been trawling the internet to see what has been done about a vaccine for type 1 diabetes.  There have been claims or rumours of trial vaccines being "close", but reading between the lines, that is not actually possible.  This is mostly because no one knows exactly WHY some children suddenly develop T1.  From studies, it can be seen that there can be a genetic component, but it is mostly attributed to a virus attack.  TD's endo, when we first spoke to her shortly after diagnosis, asked if TD had recently broken any bones, or if there had been a major social or emotional upheaval.  (The answer was no to both these questions in TD's case.) Studies regarding stress as a contributing factor are inconclusive - some research pointing towards a nod and others stating this is not plausible.  The upshot is that it is impossible to prevent something if you don't know what causes it.

A vaccine to prevent anyone else getting T1 would, of course, change the world, especially as T1 diabetes seems to be on the rise.  The "risk" ages are 4 to 7 and 10 to 12 (who knows why) and strangely the further away from the equator, the more cases are diagnosed.   TD fell plonk in the 10 to 12 age group, and a fair distance from the equator. If a cure could be found., along with a vaccine, I would be even happier.

Type 1 diabetes involves a lot of needles, injections, food control and vigilance. It is a full time job around which everything else must fit in.  There are things that TD is not able to do when she is experiencing a hypo- or hyper- glycaemic episode.  These include, but are not limited to, exercising, concentrating or anything involving fine motor skills precision. So, keeping the glucose line at an even, flat 6 or 7 is a goal that needs to be strived for daily, just to get on with regular stuff.

Viruses are big news at the moment - understandably - as COVID 19 has affected everyone worldwide in some way.  A virus can be defined as  "a disease -producing organism, capable of growing and multiplying within living cells" (according to my Pocket Oxford dictionary which was printed before computer viruses existed!!) or "moral poison, malignity". 

All the viruses floating around present challenges that need to be addressed head on.  Currently the moral poison of prejudice is being held up in the spotlight, and it is a dismal virus.  There is no vaccine for intolerance and hatred, and we need to find a cure to moral blindness as fast as possible before the system of society is too corrupt to recover.

Just like TD's diabetes diagnosis highlighted for us the impact a virus can have, COVID 19 has exposed the vulnerability of everyone.  It has reminded us to appreciate what we have and why we have it. It reminds us to be human and to be kind.

The art of masking

We are all learning new skills from this Corona virus.  South Africa has just shifted from level 5 to level 4 lock down, and it is now mandatory to wear a face mask .  So, our challenge is to make suitable, comfortable, effective masks, and to learn the art of wearing them.

The making was not too difficult.  There are plenty of instructions on YouTube, and being the hoarder that I am, I just happened to have quilting cotton, the lining filter material, and a softer cotton for comfort on the skin side.  And some elastic. (Should the virus require us to make anything out of old buttons, different length zips, beads, bits of coloured glass, scraps of ribbon and wool or anything else of that genre, I will be ready too....I really MUST do a clean out sometime soon.)

The wearing of them is where the real skill lies. President Ramaphosa shared the first challenge with the nation (and the world) when he struggled to put his mask on during a live TV screening.

He was gently teased, and, showing off true leadership skills, managed to get the country laughing together with him. The top down approach works best for me.  I put the elastic around my ears, and place the mask over my eyes, and wiggle it down to cover my nose and mouth.  I quite enjoy wearing my mask.  It makes communicating with ones eyes all the more important, or not communicating at all quite acceptable.  It is also a bit like playing the broken telephone game, where words get distorted through the layers, and you have to guess what is being said, or you can pretend to hear whatever you want to hear.  It also, I find, helps me concentrate on mindful breathing.  The in and out are more audible to the self, and I can feel the air going in and out, in and out, slow-it-down- in and lonnng out.

 It is not all a bed of roses though.  Sometimes we need to be heard properly, say, for example when I was collecting TDs meds from the pharmacy. ( I have taken to writing it all down, and shoving the piece of paper on the counter.)  Or sometimes we need to sneeze, and then there is a mask-full of trouble.  The nose drip is a challenge too, as is the unscratchable itch. I am sure as we get more used to wearing these masks we will conquer these challenges.

The challenges I  am struggling with at the moment that can't be adjusted with elastic or practise, are things like the schooling situation.  There have been so many iterations of when the schools will be opened, that nobody knows what is happening.  It is time, maybe, to separate schooling from education.  I am doubting TD will be able to go back to the classroom any time soon.... Diabetes T1 is high risk, as elevated Hblc levels (long term glucose control) seem to play a part in hindering recovery from COVID 19.  Anything above 6.5 is considered risky.  TD's latest level is considerably higher.  But that doesn't mean her education must be compromised.  I think I read somewhere that education is all the bits of the school curricula that you remember 10 years later - the important stuff.  We will have to concentrate on that.  The fact that she is missing the fun aspects of school is very sad indeed, but we choose life.  Giving up concerts and dances and outings is a small price to pay.

Our first masked walk!

As we greet each other through masks, please look deeply into other people's eyes.  People are difficult to read if we can't see smiles or frowns or worried looks, and some people find it hard to ask for help.  And not all masks are made from cloth either - people are often good at hiding what is bothering them.  If you can, support each other, especially those with sad eyes.  And to those with shiny eyes, hiding the tears - risk taking off your mask for a moment and let others know what would help. We are all learning new skills from this Corona virus.

Holidays, henna and poetry

 Last week, TD and I were discussing some of our favourite sayings and/or quotes. One of mine is the first line of a poem by Gerard Manley Hopkins : " The world is charged with grandeur of God."  I love the energy and responsibility that single word, "charge" gives.  We have just returned from a 5 day break in one of the most beautiful places in the world.  Sedgefield is a sleepy village along the East coast of South Africa, and has been a second home to my family for all of my life.  I think Manley's poetry is fitting for such a splendid place.

Sedgefield reflections

As children, my siblings and I would stroll down to the lagoon, fetch firewood from the surrounding wooded areas to makes fires, pump our own water out of the ground, and read by paraffin lights once the sun had gone down.  These were simple holidays, where the important stuff was the rhythm of light and darkness, high and low tide, and using resources with care.  All of this has been replaced, many years ago, with municipal services of electricity and water, shopping centres and huge expansion.  Beautiful places attract crowds.  And yet, for me, the delight of Sedgefield is the nostalgia of a different, alternative type of life.

This short holiday was even more meaningful, as R is here for a few weeks from the UK.  The four of us have not all been at Sedgefield together for a very long time.  We spent many hours on the stoep, playing variants on the game Bananagram, eating simple, delicious food, reading and chatting.  We went to the beach and swam in the sea water gently rolling into the lagoon. We shopped at the farmers' market and walked every day.  It is a poetic sort of place.

Andrew got poetic too, in the form of henna art on TD's arm.  Henna is a perfect medium for trying out body art, as it fades and disappears within two weeks, leaving space for new ideas or back to school regulation art-free arms.

Andrew is very good at this sort of thing and asked TD what she would like have drawn on her this holiday. She chose a full arm design to feature her CGM.  Technology can be body art too, and TD wanted to embrace her uniqueness.  So the centre of a flower is her CGM censor, with petals radiating out from it.  That is sort of how diabetes management works - the glucose number is at the centre of everything, and all other treatments and management radiate from that number.

Too high? - add more insulin.  Too low? - give more glucose.  Too stressed? - work on calmness.  Too tired? - sleep. This was the holiday of LO appearing on the sensor reader - TD went so low several times it didn't register on her CGM at all. This means her glucose number was below 2.2. This is not safe.   The rest of TD's arm has other important information about her in henna: where she lives, her name in code, a "this way up" arrow and other such vital details.  For good measure, Andrew added a traditional anchor and a "I love Mom." and of course, it goes without saying, a dragon. 

Instead of hiding the CGM, TD decided to celebrate it.  Diabetes (or any illness) does not need to be covered up.  The pancreas is not going to heal itself, so she might as well deal with the fact that she will forever need to monitor her glucose and celebrate that technology can help her.

TD's quote last week was "How lucky am I to have something that makes saying goodbye so hard."  This was written by A.A. Milne and said by Winnie the Pooh.  It is smart choice of wisdom for a 16 year old to cherish.  I think that is how we all felt when we left Sedgefield on Monday to come home to do the Christmas preparations.

It's a nostalgic time of year for me, and as we round the corner into the last week of 2019, I intend looking for poetry in every undusted corner of my thoughts, every smile, and in all the kindness that is dispensed at this time of year, so that 2020 starts with a sense of gratitude. And may we all be charged with the grandeur that is around us.

It's National Peanut Butter month

Note to self:  Schedule hair appointment for 14 November 2020.

Not that I am suggesting I won't have a trim in between, but I think I need a definite appointment on that particular day.  The 14th of November, as you well know, has been set aside as World Diabetes Day.  The International Diabetes Federation chose that date - Prince Charles' birthday (oh alright, Mr Banting's birthday too) - to encourage the world to become more aware of, and concerned about, diabetes.

Awareness is always a good thing, especially around preventable and curable diseases.  It warns and encourages people to check various body parts and take the necessary action.  I am most grateful that Andrew's cancer was caught early and treated.  Type 2 diabetes can be prevented and controlled.  But Type 1 can't.  It is an autoimmune disease, and strikes for no known reason, and very quickly too.  All it takes is a few days to go from a carefree 11 year old (in TD's case) to a insulin-dependent-for-ever PWD (Person with diabetes). Just this week and not for the first time, someone benignly told TD to "get better soon."  It doesn't work like that - the diabetes club offers life long memberships only.

There was a gathering of mothers of T1 kids this Thursday, because that can be a kind of club too.  Shared experiences can make us stronger.  Community can be less lonely.  Connectivity can be helpful.  I didn't go.  TD was home studying for exams, and stress overwhelmed her at about the time I was going to set off for the tea.

A beautiful and calm place to visualize

Instead we went for a walk, did some breathing exercises, visualized her happy place, and got back on track.  I am grateful I was there when she needed me.

So, back to World Diabetes Day and my hair appointment.  I am thinking that next diabetes day I will do something that is both ordinary and nourishing: a hair cut fits the bill.  It will be a nod to myself that life goes on regardless of mothering diabetes, but sometimes it is lovely to take time out to let someone pamper you.

 These days there seems to be a month for everything.  November alone celebrates, according to one website,

#Aviation history month
#International drum month
#Caregivers appreciation month
#Diabetes awareness month
#Model railroad month
#Novel writing month
#Peanut butter lovers month
#Jewelry month
#Sleep comfort month
#National Grumpy month


It's all a bit much.  I guess we can pick and choose which to celebrate.  But it makes me uncomfortable to have to celebrate T1 as it is unpreventable and incurable.

Of course, the above list is incomplete.  It fails to mention that it is also MOVEMBER, to bring awareness and support for men dealing with testicular and prostate cancer, suicide and mental health issues.  That means Andrew is cultivating his hairy upper lip look.  This year he is going for the handlebar moustache. Sigh.

But if even one person is helped by all these awareness campaigns, they will have served their purpose.

Note to self:  Schedule all my own health checkups early in the new year.  And don't forget to book Bronwyn for 14 November.

Note to reader:  I made up the National Grumpy Month.  It just fitted my mood.

Snow White and the 7 Diabetic Dwarfs

TD recently wrote a play about the damaged characters in the fairy tales that we tell our children:  Pinocchio the compulsive liar, Goldilocks with her sense of entitlement, Rumpelstiltskin who has anger management issues...and a few more.  It had a clever setting - a group therapy session - and a good take-home message:  should we still be telling very young children about these dubious characters, or should we rather affirm good morals of real life heroes?

She did not include Snow White as one of her characters, but I think the story deserves some of our attention.  How about Snow White and the Seven Diabetic Dwarfs.

They are, in no particular order:

Sleepy:  A character that needs no introduction to any one in this day and age.  Life is frantic, full of things to do, people to see, YouTube videos to watch... Who can honestly say they consistently get their recommended 8 hours of shut eye? People with T1, and their families, often get less sleep than most - blood sugars need to be tested during the night.  It is easier now that TD wears the CGM (Continuous Glucose Monitor) because at 2am all I have to do is hold the sensor to her arm and check she is "in the zone" (see previous post), correct if low, ignore if a little high, and waddle back to bed to sleep a bit more.  Before the CGM days, TD had to wake up, prick her finger, do the blood test and then proceed with the next steps. CGM for the win!

Grumpy:  Following straight on from Sleepy, we have Grumpy.  It can be hard to function optimally on disturbed sleep, and grumpiness is often a by product of tiredness. 

Dopey:  This is another effect that Sleepy has on us. If it has been a long night, I sometimes walk round in a fug of forgetfulness. I know there is stuff to remember, but I just can't figure out what it is I am forgetting.  The extra testing kit?  Buying more Super Cs? Changing the needles on the pens?  Luckily most of that has become habit now, and the things I forget are less important...like where I left my glasses or how many cups of tea I have consumed...

Sneezy:  Do you also sneeze when you are tired?  It seems to be quite common.  TD takes Allergex nightly to alleviate the symptons....if she forgets, her eyes water, her throat itches and she sneezes.

Bashful:  There are only a few situations where TD prefers not to inject insulin in public spaces.  Mostly she has this Bashful thing under control.  Of course, dresses, dungarees and other clothing that make injecting into the stomach for fast acting insulin impossible, are a problem, and TD excuses herself to inject.  (Never inject through clothing, in case micro fibres are pushed under the skin, leading to possible infection....)

Doc:  Every T1 family's favourite of the Dwarfs.  It is so important to have a good medical team to partner with.  TD has great people on her help list : the endocrinologist is great, the GP is wonderful and most other medical practitioners are kind and understanding.  Quite frankly, if they are not, it is time to move on.  Trust is a huge Doc issue.  We have been very fortunate in the people who help TD.

Happy: Sometimes the challenges are overwhelming, but it is important to allow ourselves to be Happy.  Not all the time, obviously.  Adversity is a great teacher, but happiness is a state that I need around me.  I am happy to be able to share my life with the people I love.  I am not happy that TD has diabetes, but I am happy that she is TD, and that seems to include diabetes, so that is just how we roll.

Fairy tales are flawed.  Snow White is not a particularly positive role model for children today.  I reread the story to refresh the details in my mind, and the whole beauty fixation/role of females/ being saved by a handsome prince  sticks in the throat a lot.  But, seeing as we are all flawed too, perhaps it is important to retell these tales to our children and embrace the notion of happy ever after.  Stories give us a chance to explore villains and heroes, right and wrong, real and fantastic.  The 7 dwarfs are an odd bunch, but rather relatable don't you think!

The Seven Diabetic Dwarfs

In the Zone

When I am "In the Zone", I am energetic, comfortable, creative and functioning well.  At least, that is what it means to me.  Often that means music - anything from loud, upbeat, pounding stuff to gentle, melodic, soothing sounds - depending on what type of zone I am in-, a mug of tea in hand, a head full of ideas and something practical on the go.  My latest time-eater is making fused glass pendants.  I love the way the glass melts and the colours flow and collide. The glass sits in the microwave kiln for about 40 minutes after firing (no peeking allowed as it disrupts the process!) .  Anticipating the results means that opening the box is always a bit of an occasion. Sometimes the product is disappointing, sometimes the glass needs reworking, and sometimes I am astounded by the beauty of it.  The uncertainty is part of the pleasure.

For other people, being in the zone can be achieved by meditation or yoga or prayer.  I find it quite difficult to switch off my thoughts, so have to practise stillness and mindfulness.  Others, I am told find their zones in coding software, some in playing a musical instrument, some in baking....The list is endless as we are all different and need to find our optimum place to be environmentally, physically and emotionally.

For TD, being "In the Zone" has an additional meaning.  As a teenager with Type 1 diabetes, being in the zone means her glucose readings are range of 4.5 - 10.  Ideally, the range should be narrower - about 4 - 7, but teenagers have so much to contend with that the wider ranger is a more realistic goal.  And, believe you me, not one that is easily achieved.  TD's glucose numbers are often in the teens.

I know how frustrating it can be when I want to work on a project and realize I am just not in the right space.  Usually my best course of action is to leave whatever it is I wanted to do, and come back to it at another time.

TD doesn't have that luxury.  Her life has to go on whether she is in the optimal zone or not. Elevated sugar levels not only cause long term damage to eyes, kidneys, nerve endings to name a few, but also cause immediate detrimental effects like headaches, blurred vision, nausea, muddled thinking and muscle weakness. 

She has learnt to cope.  Obviously the goal is to keep the glucose numbers on the straight and narrow.  It's complicated though.  Not all carbs are created equal, and not only does TD have to determine how many carbs are in any given food stuff, but also how quickly or slowly those carbs are released into the blood stream.  She also has to factor in her emotional levels, her physical tiredness, what stresses she will be facing (because adrenalin releases sugar into her system,) what day of the week it is, and whether or not yellow is her favourite colour.  You get the picture.  Her relationship with glucose is, shall we say, Complicated.

Being in the zone is a wonderful place to be.  It's worth pursuing even when it seems quite a distant hope.  I don't expect to live permanently in a creative bubble of happiness, but when I am there, I can see beyond the mundane.  TD's zones are writing, music and drawing.  They are places of connection, both with oneself and with others.  That is why they are important and worth pursuing : connectivity makes us human.  Like other Superheroes, TD has extra powers in the time/space continuum zone - she may look like a usual human, but really her superhero strengths are courage, tenacity and kindness.

Some of the latest pendant attempts

Feedback, as promised. And Mothers' Day stuff

It is early days - 17 to be precise - so this feedback about how well the Tresiba is working, will be short.  We all love the longer dosage period.  There have been some (but by no means all) wonderfully even night glucose numbers.  TD is still running high.  Overall, I am hopeful, although I should probably lower my expectations.  Tresiba is not a magic wand, and all the usual suspects - logic, vigilance, calmness - need to come to the party. I will report back when there is more data....

....but in the meantime, I have been sunk into the thought bubble of mothering. (Again.)  This time is has been prompted by Mothers' Day which we celebrated on Sunday.  It was the first time in many years that I didn't cook a thank you lunch for my own mother.  Being motherless loomed large.

My own family treated me with wondrous indulgence and kindness.  Most soul feeding was the card with words I treasure from my two children.  TD organised the whole thing, as her brother is (still) overseas.  I read it and glowed from the inside.

For lunch, Andrew had decided on a trip down memory lane.  In our youth, we enjoyed getting take outs from a Greek restaurant in Sea Point and would eat watching the sea and avoiding the loudly demanding seagulls. The restaurant, Ari Souvlaki, is still in the same place.  There are such nice people in this world.  The owner showed his freshly baked trays of puddings, and asked me which I would like for a mothers' day treat. They both looked delicious.  I chose the milk tart pastry but he scooped one of each type into a container and handed them to me with the kindest smile.  Such generosity almost overwhelmed me.

Because that is really what mothering is all about I think: Generosity and the giving of oneself.  Mothering is not confined to biology, and there are many people who have mothered me in some form or other.  Many who have played (even if they don't know it) pivotal, key, life nurturing roles that I have relied on when I have needed extra courage. I appreciate you, even if it seems I sometimes take you for granted.

Mothers, I think, should be taken for granted.  Children should just be able to assume that  Mother is their backdrop and safety net.  It doesn't need thanks or acknowledgement or come with expectations.  My children owe me nothing - and I owe them the best I can offer.  That is how parenting works.  And that is why when my children do write lovely things to me in a Mother's Day card, I bubble inside and feel that all is right with the universe.

Adulting

Well, there went January.  All of a sudden the year has truly and properly started.  TD's annual school band camp has come and gone, and she handles these times away with growing confidence.  I am getting a bit better too, and once she and I had set out a plan (SMS her glucose number to us at 6.30am, 9pm and 1.30am...) I felt, if not completely confident, more reassured that the weekend would be ok.

The view from our stoep at Wellington

Andrew and I decamped nearby in Wellington and caught up with our reading, chatting, knitting and relaxing, spending long lazy hours near the pool or admiring the calm surrounding. It was just what we needed. Especially the chatting.

Energy is still in short supply here, and on Monday the T-shirt slogan that became popular a few years ago, suddenly made sense :  "I can't Adult today." When I first saw it, I had to ask the kids what it meant and they patiently explained that the youth of today are quite happy to use nouns as verbs. I find a lot of grammar usage strange these days.  But it all made sense on Monday :  I could do with a patch where I don't have to shoulder quite so many responsibilities, where I can doodle pictures, play in the garden, nap in the afternoon and have frank discussions with other children about bugs and whose cat has the louder purr.

TD's year has started with gusto - her extramurals keep her busy everyday.  She is taking the academic year with the seriousness that grade 10 demands, and she is handling it all with grace and wonky sugar levels.  There are so many factors that affect her glucose number - tiredness and stress being two of the major ones.  But this is life -warts and all, so everyday we try to balance the scales of insulin and glucose.  Some days we triumph more than others.

This week the new Gucci campaign was launched.  It is called the Future is Fluid, and it features youngsters from around the world who are hoping to create a more tolerant society, particularly around gender issues.  If you know who you are looking for, you may spot TD in the background.
Here is a link: https://www.youtube.com/watch?v=nFUvLNL7E8Q.   I am beyond proud of TD and her desire to be part of a better world.

So I thought I would like to offer my campaign for a better world too.  I have decided that on those days that I "can't Adult"  I am going to change the definition of what it means to be an adult.

Andrew getting into the swing of Adulting

Who says care-free doodling, playing, napping and frank discussions are only for children.  I know I will be able to handle the hard stuff a whole lot better if I spend more time doing the playful stuff.  Keen to join me? - I am happy to share the box of crayons with you, and while we are colouring in outside the lines we can chat about the serious business of being an adult.  Or bugs and cats if you prefer!

Footsteps

A sandy beach is the perfect place for gentle footsteps.  For a change of pace, I decided to take TD and her friend off to a beach.  We had to collect some pottery we had painted a few weeks before, so it seemed liked an excellent opportunity to go for a stroll on Hout Bay beach.  The girls raced to the water's edge, revelled in dipping their toes in the water, managed to persuade me to join them in a long jump game, and made "snow balls" from wet sand.  I went with no agenda, but found myself relaxing into my own pace and just enjoying my surroundings.  My Mom always liked a walk on the beach "to blow away the cobwebs."  I understand what she meant - the sound of the waves, the breeze, the feel of the sand and the wide open spaces are excellent antidotes for a busy mind.

When TD and her friend decided to climb some sand dunes, I opted out, and left them to it.  I sat and watched them from a distance, next to the nearby lagoon.  There was a flock of seagulls on the other side of the water.  Near them was a mass of something I couldn't quite make out....until I saw some movement.  The mass was a huddle of chicks, being watched over by the gulls nearby. Every now and then, one of the chicks would tentatively walk to the water's edge.  A few tried out their wings on short flights, and a couple tried to catch a fish. (one managed, but the fish was large and the bird dropped it!)

I was fascinated.  I spent a long time watching and wondering if the birds felt exhilaration at learning new skills (or feel anything at all).  I wondered if they used logic to figure out that flying into the wind is difficult, and the best course of action is to stop trying and glide with the air current (or is it built in instinct...) .I  enjoyed letting my mind float aimlessly.  It felt like a freedom to sit and watch properly for a while and not rush off. The whole scenario just seemed poetic to me.

I was, of course, keeping an eye on the girls too.  They were rolling down the dunes, burying their legs in sand, chatting and laughing.  Like the senior gulls, I was close enough to make sure of their safety, and far enough away to let them do their own thing.

Knowing how far away to sit as a parent is a bit of a skill.  Sometimes we need to hover closely and other times we need to let our children fly alone, even against the wind.  TD is tentatively dipping her toes into new waters, by trying out a CGM. (Continuous Glucose Monitor).  She has always been reluctant to use wearable technology, so last Saturday's appointment with the endocrinologist is a flight of freedom for her.  But as it is early days, I will write about that another time.

In the meantime, it is that time of year when we seem to endlessly plod through the shopping malls  and other (symbolically) hard paths.  Be gentle on yourself, and if you can, find a beach to enjoy soft footsteps and sand between your toes.

Another trip around the sun

Today is the 24^th anniversary of one of the most joyful and momentous occasions in my life.  At 6.34am on a Sunday morning, I became a mother. My life changed forever.  The person we celebrate today is a Gentle Man – kind, compassionate, thoughtful and wise.  He is also gorgeous and exceedingly astute and determined. I admire him greatly and love him totally.

I also miss him, as he lives abroad at the moment.  We do speak when we can, but that isn’t quite the same as the casual comment type conversations of everyday living together.

He was an adorable baby, and we had so much fun learning how to play together, with him being the teacher to us adults of what is important in life and how to delight in every achievement.  Baby babble became precious words.  Words became concepts.  Concepts became theories.  Today he is a PhD Pure Maths student.  (Not that I am suggesting a linear progression of those things – I believe some concepts and theories happen before words.  Words are just a way of communicating them!)

This is a photo of him teaching Andrew the crucial art of play.  They both look quite different now, particularly with regards to hair styles 😊

He, being the elder child, was of course the prototype.  I look back now and think of all the things I would do differently. TD probably benefits from some of the lessons we learnt from the trial and error approach all parenting involves.  Parenting is a huge learning curve and children are the most patient teachers.  From dependency to independence, it is a journey of interweaving stories, past and present colliding, infinity becoming a possibility.  Becoming a parent felt to me like slotting the crucial piece into a jigsaw puzzle – the world suddenly made sense. 

It is not unusual for moms to think their offspring are the best in the world.  But the thing is – my two really are. 

What a journey this has been and continues to be.  Thank you, R and TD - as inadequate as those words are.  I love you both infinity plus one.

Happy birthday. 

14 November and ice cream

 Mr Banting’s birthday has become International Diabetes Day.  This is, I assume, because of his life saving, Nobel prize winning co-discovery of Insulin and its therapeutic effects (in 1922 in case you are wondering. ) There were online offers to sign a birthday card to the (dead) man in order to break a world record and acknowledge him as the Champion of diabetes, but this kind of showmanship is not my cup of tea.   I would rather raise my cup to  the heroes  who deal daily with the weight of the diabetic diagnosis.

So we didn’t acknowledge World Diabetes day in our household, although I was made aware of it through the forums and a friend who was hosting tea for moms with T1 children.  We did go out for ice cream after supper (a very healthy meal if I say so myself….) in order to Celebrate Life.  Food can be a scary issue with a person with diabetes.  I was thinking yesterday, as I reached for a handful of peanuts and yet another cup of tea, that I can just eat when I feel peckish without wondering what it will do to my glucose levels or if  I need an injection.  It is a freedom I usually take for granted, as most people do.  But really it is a luxury.

It was also  Great Aunt Edna’s birthday yesterday, so we clinked ice cream cones and wished her health and happiness. TD and I chose Strawberry birthday Cake as one of  our flavours in honour of her special day.

While we are in the birthday mood, it was also Prince Charles’ birthday.  It was tempting to go back for seconds to wish his health too, but then I remembered some one else I know who has the same birthday. They would need toasting too! Luckily we decided moderation would be more sensible.  Ice cream eating is an insulin heavy activity, and anyway, more than one helping is difficult to stomach.  There can sometimes be too much of a good thing.

Happy birthday to all the 14 November people.  And Celebrate Life to all the rest of us.

Reflections in Glass

Sometimes I get itchy fingers (like itchy feet but with less expensive consequences!)  I need to make or create or do something tactile.  Sometimes it is because life can get a bit routine – work, cooking, cleaning, driving, mowing the lawn –all good in their own way, can seem a bit mundane at times.

We have a Wendy House in the garden – home to cutters, rakes, brooms, garden chairs – that sort of thing.  It is as old as our title deed and rather weathered.  Quaintly, a stubborn rose plant is growing up a side, through the house and poking some branches out the front. (No rose flowers in all the twenty years, but such determination I can’t cut away.  Besides it looks rustic.)  Parts of the shed are actually rotten – the wood needs replacing. And don’t look too carefully if you don’t want to see the little beetle holes.  It is a ramshackle shed.

A few years ago we screwed the windows shut after I found someone in the garden trying to get into the Wendy House.  What he wanted I will never know, because we both startled each other and he ran off.  So the windows no longer open, and the door is symbolically rotten.

What better place to put a stained glass window.

I love cutting glass and playing with the way light falls, reflects and gets absorbed by colours. So, that is my latest project and it gives me a lot of satisfaction.

And of course, time to think.  Sometimes those of us who feel that we are more than the sum of the functions we do, need a little sparkle added to our lives.  I am very conscious of the many comparisons that I can make between my Wendy House and my Wendy Self, what with some rotten bits, quaintly ramshackle and don’t even get me started on the whole intruder- in- the- garden- and- window scenario!  So spending some time on adding a completely unnecessary but creatively fun window into the Wendy Shed/Soul turned out to be not so unnecessary after all.  I needed to add a personal touch to a neglected space.

Parenting is hard work.  We all have challenges to face . Sometimes the challenges are  immediate or more intense than at other times.  Sometimes it is the long term just coping with everything that is thrown at us that seeps away the energy.  I love being a parent.  I love the creativity, problem solving, all consuming attention it requires.  I even love the difficult bits, the sleepness nights, the routine of it.  Because all of it, like the pieces of glass in a stained glass window, create a whole picture from fractured bits and pieces.  I added a few mirror pieces in the window too, just to remind myself to put some self reflection in the mix. 

The window has turned my ramshackle shed into an Eclectic Garden Storage Unit.  Nah not really. It is just my Wendy House.

Wearing my heart on my sleeve

My heart is a fragile place at the moment, - it has been a bumpy week. Yesterday we dropped our son at the airport, waving him off to start the next chapter in his adventures. Saying goodbye to him at the airport is not uncommon – he has travelled a lot in the last ten years, and with such regularity that we joke that we have our own reserved parking bay at the parking garage. But yesterday’s goodbye seemed different. Perhaps it is because I am feeling a little vulnerable at the moment; perhaps because his stay at home was much needed family time; perhaps it’s because goodbyes have been especially difficult this year. He was sensitive enough to pick up on my reaction and apologised if his departure was going to blow the tissue budget for the month, and reassured us he will keep in touch and be back for a visit soon.

TD’s week has been bumpy too. On Tuesday her glucose numbers were dangerously high.  Her Whatsapps messages sounded as though she was distressed. Quite rightly too – Glucose numbers above 20 are scary. I gave her the usual advice (inject extra insulin and drink water, and test regularly.) It didn’t work. Instead of lowering the glucose number she went up. We checked with the endocrinologist that we were on the right track –she confirmed we were, and if the stubborn high didn’t go down and if TD had ketones in her blood, she would need to be hospitalised. I didn’t relay the second part of the message to TD, but she sussed out the situation accurately. Her next reading was still high, and I decided to fetch her from school. Her text  message read “Please don’t take me to hospital.” Followed by: “Promise.”

This was not a promise I could make – and I was heartsore to know that sometimes, as parents, we have to do the unwanted or unpopular to keep our children safe. TD has an immense fear of  hospitals, and as our last experience there was less than optimal, it is not a particularly welcome thought for me either. But the truth is, that if the glucose in the blood is too high, TD would need to be put on a drip.

At home, TD pumped more and more insulin into her system drank litres and litres of water and we watched a movie to relax. Ketones were 0.1 so we could breathe easier. It worked. She  was still high, but below 15, so not only did we avoid the hospital scenario, but she was also able to go back to school to see the student plays production. This was very important to her.

The rest of the week was a rollercoaster ride of glucose numbers.  She soared back to above the twenties and dipped into the low fours.  I am aware, again, how much she deals with on a daily basis, and how maturely she deals with it all.  We changed insulin vials, and eventually changed insulin type.    The schools are on a short break, and I am hoping this will give her body - and my heart - a chance to catch up and settle down to our usual patterns.  Deep breaths, sleep and lots of tea should do the trick!

Target practice

Both TD and her brother are keen archers.  Our son has been involved with the ancient sport for the last four years, and TD's high school offers it as an extra mural, so she has been doing it for almost two years.  Often they enthuse to us about the art,  and so last weekend all four of us signed up for the afternoon practice at the Cape Town archery centre.  As Andrew and I were complete novices, we were placed in the group that needed to know everything (including for me, which way up the bow went!).  The other two were put in the group that shot at 20m and didn't need the constant supervision we did.

We are bitten.  It was such an extraordinary experience, and I enjoyed every minute of the two hour lesson.  It turns out Andrew is a bit of a natural, often hitting the yellow centre of the target - and this surprised me because his darts skills are, shall we say, a bit challenged.  I managed to miss the entire target once, landed  arrows on the outer rims a few times and, once I had figured out the skill of the correct posture, managed a few golds. Not bad for a fifty something novice (OK, it was only from 10m, but I was proud of my efforts!)

So if you are looking for something rather unusual to try, I would recommend archery!  Things I will bear in mind next time I go are that it is good to have a firm grasp of the basics - how to hold the bow (they are large - person height!), how to support the arrow in the nock correctly, how quickly to release the arrow once you have aimed.  That sort of thing.  You also need to take into account the surroundings - how many people are aiming at the same butt, the wind, sunlight in eyes,  and finally, especially for me, I need to find my confidence.  And to forgive myself for the occasional complete miss, and to keep trying.  Like all sports, I am sure practice is the key to good results....

...Not unlike diabetes care.  The target that is aimed at is optimum health, and the method is similar: have a firm grasp of the basics - knowledge up on the glucose/insulin relationship, know how best to support TD with all she is dealing with, know when to let go.  And take into account the whole picture - what's blinding us or sending us off direction and make sure we are all on the same page.  And then have the confidence to know that I am doing the very best that I am able to at any particular time.  Things go wrong, target levels are missed, and that's ok.  Keep trying and never give up.

 Aiming at a target is a good idea.  The concentration and focus archery instills, and the discipline it requires are excellent life skills.  Whatever the target is - life balance, happiness, health - the more you practise the easier it becomes.

Maintenance

It is gutter cleaning time!  We have been promised rain next week , and I intend to be ready.  TD had been invited to a weekend away party - much excitement for her, and as usual, a little trepidation for me. We dropped her off at the brave parents' home and had the morning to ourselves.  What better way to spend it than cleaning the gutters!  I am not particularly comfortable up a ladder, but the view from up there is worth the angst.  I felt - um - elevated. And it cleared my head to think about things.  Firstly, sometimes we need to rise above some situations to take a better look at them. From the top of the ladder I could see which gutters were full of leaves and needed to be cleared and which were clean.  And taking a top down look at this weekend  party I could see that my anxiety at TD spending the night far away is just that - MY anxiety.  She is 15, and adulthood is just around the corner.  She is confident about managing her diabetes, and I need to allow her to enjoy her independence. (Although my angst is not unfounded, and I need to cut myself some slack too.)

The second thing I learnt up on my ladder that sometimes we do become overconfident and that can be dangerous too.  I thought that while I was up there I might as well cut off some overhanging branches.  They were just out of reach, so forgetting I was on a ladder, I leant across to grab the offending branch, and felt the ladder wobble sideways.  No harm done - I managed to regain my balance and steady the ladder, but I did realise I had reached too far.  I could have fallen off, and it would have hurt.  Similarly, diabetes needs constant vigilance.  It is not a disease that allows you to forget where you are or to over reach the limits of the support system.  Falling is dangerous and life threatening.  Even if no one is holding the ladder (us for TD's diabetes at the moment) it is important that she explores

her independence safely.

Thirdly, it was oddly satisfying cleaning those gutters and knowing we would be prepared for the winter rains (please please let it be a good wet winter to fill up the dams.)  Routine maintenance is important - whether it is looking after yourself, or making sure that you are ready to face whatever is coming next.  It is worth taking the time to clean the dirt away and start the season with debris free support systems.

Fourthly, I learnt that from above it is easier to see what other chores need to be done - wood work that needs revarnishing, a bench that needs fixing, a bush that needs trimming and a path needs sweeping.  It is good to get different perspectives of how things are doing and what needs to be done next.  It will be good to chat to TD about what we can do next to help her tweak her diabetes management to make life easier for her.

I am looking forward to hearing all about her adventures when she gets home this afternoon.  I am sure she will bubble in in a cloud of excitement and enthusiasm, as usual.   I just have a few hours left to tackle some more of the jobs I saw needed doing yesterday.   But first, it is time for tea.

April

It's been a low energy sort of month for me.  One when I have needed Elgar and Chocolate and Sleep. Luckily it was Easter - so chocolate was everywhere in abundance.  Equally luckily it was school holidays, so we could sleep in an extra hour or two.  TD did not overindulge in Easter chocolate - she ate one treat only. Nevertheless her two weekly download of meter readings, which we send off to her endocrinologist, showed a record number of stubborn highs.  Something needed to change.  We upped the morning Lantus (long acting insulin) dose.  We tried to be more carb - clever : difficult over the Holiday Season, but nothing much helped. 

Until it dawned on me.  The problem might be that it wasn't dawning on me!  We were getting up at 7.30am instead of the usual 5.45.  My theory is that this threw out the whole daily schedule - TD was getting her Lantus too late in the morning, and maybe it was pushing all her numbers high.  It's just a theory - what do you think?  Possible? Probable?  It has been a stressed family time too, so maybe That was the cause of elevated sugars?  TD is growing - could that be the reason? Or is it just a fairly random bodily function that is hard to predict and so hard to control?  Who knows.  (Perhaps you do - in which case please share your thoughts!)

I guess what I am saying is that we simply don't know so much and yet somehow things level out.  TD's numbers are back in the usual range this week. (more or less.)  She was tired of being on a glucose high and took control in getting back on the level.  She made extra efforts to look after herself.

Sometimes I have to remember that when we are on a bumpy ride, things will eventually even out.  I also need to remember that this leveling is both a function of time and a conscious effort to take care.  I can't be completely passive, but nor can I stress about the natural cycle of unpredictability of life.

Elgar's music - particularly his cello concerto (in E minor, opus 85) speaks to me in a deeply profound way.  The tempo and mood resonate with something in the tension I feel, and externalizes it for me.  And once it is out, it can dissipate and leave me calmer.

So both TD and I are starting the week on  more level ground.  She is listening to Emo music (21 Pilots, Imagine Dragons and Panic at the Disco! - and no, I haven't heard of any of these groups)  I am listening to the Love Actually soundtrack...

But if you come to visit and hear Elgar blasting out - please bring chocolate.

Gifts and gratitude

It's the day before Christmas, and all through the house are the sounds of preparations - butternut being chopped, presents being wrapped, letters being written.  We are an industrious family!  Tomorrow 26 of us will be gathered here in a chaotic celebration of togetherness. We are lucky this year to have the London relatives visiting (J of the sugar story in the introduction blog if you have been reading them all, her husband and sweetest seven year old girl who believes in the magic of Christmas, and our son, home for a bit from Cambridge.)  It will be loud.  It will be messy.  It will be indulgent.  And it will be a relief.  Three years ago, TD was in hospital on this day - still in ICU hooked up to drips, being monitored constantly by kindly nurses.  We were at the hospital all the time - there is a parents' rest room attached to the paediatric unit, where we made endless cups of tea, and went when we needed a moment to collect ourselves and muster courage.  Occasionally we popped home one at a time and somehow in that "pop" time I managed to do some Christmas food prep for the family gathering.

On Christmas Day, the doctors decided TD could attend the celebration for an hour.  So (for insurance purposes) she was discharged and then re-admitted to hospital on December 25.  I was terrified.  The dietician had given us a list of dos and don'ts, and TD was already injecting insulin herself, but the What Ifs loomed large in my head.  For me, it was a terrifying Christmas. Luckily I was too tired to do anything but put on a smile and cope.

So this Christmas will be a relief that we have all survived, and are stronger and more resilient.  Anniversaries can be tricky times for me - I get sad, my mind wanders off into places that can be gloomy.  My attempts at mindfulness (living in the moment) slip and slide down memory lane.  This is how I was feeling a few days ago on the anniversary of TD's diagnosis.  But, you will be pleased to know, TD handles this time with grace and serenity.

 The Christmas tree is twinkling in the corner of the lounge.  The presents beneath look enticingly intriguing. The smell of gingerbread stars and trees ( Gingerbread people presented too many gender issues for TD!) is wafting from the kitchen.  Gratitude is coursing through my veins.

Wishing you all a very happy Christmas.

Siblings and thankfulness

Today I have changed the information on my profile!  Twice a year I will need to update the ages of my children, and today is TD's brother's birthday.  He is 23.  And for the first time he is celebrating away from home, as he is in the UK studying for his Masters in Mathematics at Cambridge University.  His level of intellect, determination and ability blow me away.  Mothering my children has been (and continues to be) the utmost privilege of my life.  There is a large age gap between the two of them - for complicated reasons that involve miscarriages and failed fertility treatments and years of longing and angst (enough to fill another blog).  I am forever grateful that I am the mother of these two incredible beings.

The relationship between siblings has interesting dynamics.  Our son has always been protective of TD, sometimes even more of a parent than brother.  This is probably because he is 9 years older than her, and also has to do with his gentle, caring personality.  When she was diagnosed with T1, he and Andrew were away and had to make a midnight dash to be by her bedside in intensive care. He was calm and helpful, and when she was in the ward he helped by patiently spooning mouthfuls of food into her when she was having trouble swallowing the hospital fare.  He told her funny stories, encouraged her, and made sure she had suitable movies to watch on a laptop (The TV in the paediatric ward only offered Barney, Noddy and other such programmes: a bit infra dig for TD's tastes).

The biggest gift he gave her at this stage is, I think, the solid knowledge that TD would be able to take care of her own diabetes.  He believed in her, and told her so. He has always looked at diabetes as a learning challenge for TD, and one that she is more than capable of handling.   

I know there is a cost to him.  Diabetes has meant a lot of time and worry has had to be directed in TD's direction.  I realise he worries about her, and probably us.  It has landed an extra layer of gravity to our family life.  I also know they love each other dearly and now that they live so far apart, they miss each other too.  That is not to say they don't get on each other's nerves at times, and the age gap is quite pronounced at this time, as they are at such different stages in their lives.

Updating a status is a good time for reflection.  I am glad I will need to do it regularly, because I too change, and I would like the information to reflect that. Today I am thinking about cohesion, cake,  individuality and community, birthday celebrations and the power of family. I have so much to be thankful for.

Party tricks and food

One of TD's party tricks is that she can wiggle her ears.  It's a family trait passed down from her father's side, and quite impressive to those of us who don't have that level of facial muscle control.

Another party trick is that she can tell you exactly what she ate on any given day for any meal since Christmas 2014.  Admittedly, she will need a moment to look up the info in one of her ten food books, but the information is all there should anyone be interested in such trivia.  We have kept a food diary for TD since diagnosis.  Initially it was a life-saver for us bewildered and frightened parents.  Suddenly mealtimes had to ordered and measured and carbs had to be counted, and we had to make sure TD was getting the right food matched with the right insulin dosages.

Almost three years on and we still write in the book every day.  The format and function have stayed basically the same, but we have expanded the information to include anything notable that happens on a particular day.  So an entry may include "Bad day at school" or " Sleepover at friends." or "Knew she was low - shaking badly"  or even "Celebrating her distinction in music."

All this information is useful - we are able to see how food, stress, life, illness and particular situations influence glucose levels, and we are able to see where adjustments (of food and/or insulin) need to be made.

It serves another function too.  Everyday we sit down and chat to TD about her day - what she ate, what she injected, what the next day holds, how she is feeling - a general catch up. (Not that we didn't talk before - rather this is The Practice of Communicating.)

So there are ten volumes stacked in my cupboard creating a history of TD through food.  Food plays such a pivotal role in our lives - it is a form of communication in itself.  We share meals with friends, express our love and concern for others with a hot meal, celebrate achievements at restaurant tables, bake cakes to mark birthdays.  TD's school has a bring and share cake roster every Wednesday, because it is A Very Nice School.  Memories often are made up, in part, of tastes and flavours.  Recording all this seems like a good idea.

TD has a few other party tricks up her sleeve too.  She can recite long passages from her favourite books.  She can sing in a voice that sounds like Donald Duck. She can rattle off The Goon Show scripts, mimicking the characters' voices. She can inject insulin so efficiently before eating that you might miss it if you blink.  And she can do all of this whilst wiggling her ears at the same time.

Dear parents of T1s

We are not alone.  We are surrounded by people who care and can help.  Sometimes it seems that all our energy is concentrated on keeping our T1s safe and on the glucose straight and narrow, worrying about numbers and diets and uncontrollable stresses.  We get so focused on that, that we forget to pay enough attention to our own worlds.  Speaking only for myself here, I know that is not healthy - for TD, my family or me.

Everyone is part of a community, whether we acknowledge this or not.  Sometimes it is easy and people surround us, enfold us and support us. Sometimes it requires some effort on our part and we have to seek out communities where we can be supported.  None of this comes easily to me. I am used to coping.  I like to be in control to a large degree.  I like to be calm.  Nothing about children coping with T1 allows for these things.

When TD was in intensive care in hospital at diagnosis, we (husband, son, myself) were on autopilot.  You know how it goes - you cope because you have to, you deal with things as they get thrown at you.  It is a hyperalert state.

Into this world walked  P and her 9 year old daughter. We had met once before when they had just moved to Cape Town and a group of moms and school kids were enjoying a sunny day at a park.  She is Godmother to one of TD's friends.  We had met  before her daughter had been diagnosed with T1 six months before TD's diagnosis.  And she had come to tell me that I would get through this, and her daughter was there to show TD that she would be ok and they were both there to tell us  we were not alone.  This was a huge gift.  In the weeks and months that followed P helped me through with kindness, her vast knowledge about diabetes, and with friendship.  I am so grateful.

Other support comes from complete strangers: people far away in online communities who offer support to anyone needing it. (A big shout out to the TuDiabetes community!)  Friends, family, counselors all form part of the safety net.  My friends - who check up on me, drink tea with me and listen to me probably aren't aware of the huge role they have played.  Don't be shy to ask for help - it doesn't mean you are not strong, it means you are human.

There is a wonderful saying in my country: "Umuntu Ngumuntu Ngabantu"  Roughly translated it means "A person is a person because of people."  We are all in this together. Community is our strength. To all the people who make up the jigsaw puzzle of my life - thank you.