Turning the page

 

 

 

 

 

As one chapter ends, another begins.

 

This week ends the 27 year journey I have had with mothering my two offspring as children.  From Saturday on, I will be the mom of two wonderful, capable,  ......adults.  TD turns 18 - that magic age when childhood steps through an invisible veil into a new adventure of independence.  It is a process of course, and I will always fiercely be their protective mother ready to swoop in, when invited.  They are part of me, and turning 18 will not change any of our history, present or future.

But becoming an adult does open some exciting doors - it is the legal age for voting, for example.  And for driving.  And for drinking alcohol. TD has been studying for her learner's licence - the precursor to getting her driving licence. It has been a useful reminder to us of the more obscure road rules ( if you are carrying a load on your roof, it may not stick out more than 30 cm  from the bonnet, and must be decorated with a red flag sized 30 cm by 30 cm. No bigger, no smaller.)  I had... ummm... forgotten that.

 

Most parents will be a little anxious letting new drivers borrow the car.  Lack of experience, recklessness of some teenagers, and the notion of indestructibility that youth brings, means most of us stay up late and bite our nails until the teenagers have trained us to trust them.  It goes without saying that the drinking freedom holds the same fears.  Are our teenagers responsible enough to make good judgements?  We will find out soon enough I suppose.  TD will have extra responsibilities - checking her glucose before any decisions can be made.  (Alcohol has the double whammy of high sugars and diminished responsibility.  Driving and going low will be dangerous to all road users.) It is all part of growing up and letting go.

Happy birthday, TD.  You fill the world with compassion and kindness.  You are tough and determined.  You are gentle and humble. The world is yours, and I know you will continue to make it a better place for all of us.

And here I say goodbye to you and my blog.  Thank you for the company these last few years.  Thank you for taking an interest and making this a less lonely journey.  I will miss writing to you - it has been my grounding and thought space, but it is time to let go. My next chapter begins too.

                                                            But first....It's Time for Tea

Addendum! My new blog is at Comingback4seconds.blogspot.com if you are interested!!

“What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.”

T.S. Eliot

February 2021

It just happened to be Valentine Day two weeks ago when we decided we needed a day out.  Valentines day has always struck me as a celebration of the power of commercialism and going along with the flow mindlessly, rather than any romantic notions.   So, it wasn't a Valentine's picnic - it was just a much needed Smell-The Country- Air expedition.  I made egg mayo sandwiches and slapped some cheese and jam onto rolls, packed some flasks of hot water for the tea and coffee, made a few cupcakes and we were good to go. We picked up TD's significant other, and headed out to Betty's Bay.

We knew where we were headed - there is an botanical garden  with a very pleasantly priced indigenous plant shop, We have a few gaps in the garden and were scouting for hardy plants that can withstand our trial by error gardening method. It was a beautiful day - raining and windless - perfect for a hike up to a waterfall in the kloof.

The rain didn't last, and the walk was a meander up a river bed with shady trees and extrovert frogs.  It was a good day.

By contrast today is searingly hot - 37 degrees at 2pm, and my energy has evaporated. I can think of so many projects I could or should be doing, but it all seems too much effort.  TD has been back at school everyday since mid February, and we are settling back into routines and schedules. This has been good for her.  Glucose numbers react favourably to timetables and patterns, and TD has managed to get better control of the stubborn highs.

It is TDs final year of school.  Hard work, new challenges and leadership roles will accompany her on this year's journey.  Her official childhood is almost over, as she is about to leap off the cliff into the puddle of responsibility called adulthood.  But she will always be that magical person who talks to extrovert frogs on hikes to waterfalls.

 

 

Betrayal

⏹ Not for sensitive readers.  I am banging this blog out on a Sunday morning because the words are tumbling inside me and curdling my sense of peace.  Betrayal is a strong word, but it sums up what I have been feeling the past few days.

Speedy attacked Tolstoy with an intent to kill.  (For any new readers to this blog, I am referring to two of the free range tortoises that allow us to live in the house in their garden.).  It was Friday morning, and TD was taking a study break (chemistry this time) and wandering around the garden.  I heard anguished cries which got more and more desperate sounding.  TD was standing with tiny Tolstoy in her hand, tears streaming down her cheek.  He looked limp, with his head lolling to one side.  She choked out what she had found - the older, larger tortoise, Speedy, had turned Tolstoy on his back, and was biting at his neck.  The strong beak had bitten the eye and mouth and both looked beyond healing.  The immediate action was clear.  I gently held Tolstoy, and TD put a very angry Speedy in a confined space.  She put him in her fenced off veggie patch.  

Poor little Tolstoy.  Poor TD.  Both needed a lot of calming, and soothing before we could even assess the damage.  The swollen face and offset jaw and damaged neck didn't give us much hope for his survival. But he pulled through.  The eye is still too swollen to see if he will have sight again, and the jaw seems to be healing.  We made a "nest"  home for him in a cardboard box, and brought him inside to watch over him. Over the weekend, TD upgraded his home to a larger wooden crate that she made, and put some homely plants and gravel in it.  This tortoise is going to need intensive  care for a while still.

Tolstoy in the ICU TD made

Initially all TD could feel towards Speedy was Anger with a capital A.  I think the feeling was mutual.  Speedy ripped up the herbs in her garden, and trampled the leeks.  Too angry to look at him, we left him there overnight and concentrated on helping Tolstoy.  On Saturday morning, I prepared a portion of the garden for Speedy to live in by himself.

TD and I agreed that this incident was raw nature.  We tend to personify things some times - Speedy was obeying some natural instinct to defend territory, or assert dominance. But it felt like a betrayal.  What if TD hadn't been there at the right moment?  What if Tolstoy never completely recovers?  The garden, which has recently brought us so much pleasure, went gray in a mist of the betrayal of nature.

I reacted strongly too.  I felt broken.  This beautiful creature was damaged by a phenomenon of nature under my watch.  I hadn't picked up any signs or been quick enough to avoid the damage.  I felt drained.  But as with all crises, one copes and deals with circumstances to stabilize the situation.  The recrimination comes later.  The what ifs.  The anger.  The acceptance that there is no fault to assign.  The "we can live with this" attitude, and Gratitude for life.  Diabetes feels like a betrayal.  One expects a body to function properly, and out of nowhere, suddenly it attacks.  Nature can be so cruel. But we learn to trust again, to accept, to be grateful.   Tolstoy survived.  TD survived.  We will be OK.

 

Speedy's new garden of isolation.

The MiaoMiao

TD is sitting on the edge of the bed, holding a clove of garlic as if warding off evil spirits or fleas, and we are discussing this blog.  I initially was going to tell you all about the MiaoMiao, but she thinks it is too soon.  So she was suggesting other topics :  the garden, Andrew and my 30th wedding anniversary,  tortoises, our mother/daughter relationship, the weird dreams we had last night, arum lilies and water systems of plants.  Meanwhile Andrew is bringing freshly baked cheese biscuits for us to sample  - they are delicious - and I realize that there is beauty in the mundane.

So - the MiaoMiao.  This strangely named device is new to our household, so maybe TD is right - it is a bit soon to write about it, but I will give you some background.  TD uses the Libre Monitoring System for measuring glucose, and it has changed her life.  It replaces the 12+ finger prick tests she had to do for all those years (can you imagine inflicting that sort of pain on your child day after day, year after year with no possible holiday to let her fingers recover?) The Libre is a sensor that is placed on her upper arm and has a filament that sits 5 mm beneath the skin to measure interstitial fluid.  It needs no calibration (finger pricking) - unless something major is going on, and it reads the glucose every 5 minutes and can be read via a hand held scanner.  The sensor gets replaced every two weeks. Sounds good, doesn't it!

 Libre sensor and reader    

 

     But the thing the Libre does not do, is alert TD (or us) if she is in danger.  And not to hammer home the point, but all type 1s live with the daily danger of losing consciousness and going into a coma.  Hyper vigilance is key to good management and safety, but I am sure you can imagine how exhausting that can be over a sustained period. 

Introducing the MiaoMiao.  This device sits on top of the Libre sensor and has a Bluetooth connection to any smart phone.  Several apps have been developed which interpret the data that is conveyed from the Libre through the MiaoMiao and onto the phone.  And it sends out alarms when the glucose is too high or too low. 

The MiaoMiao sits on top of the Libre Sensor

We are still figuring out all the processes  and best usage.  One of its strong points is that it can be used as much or as little as liked; TD is using a sweatband to hold it in place, so that she can take it off  and put it on with no fuss. Andrew and I have been routinely checking TD's glucose at around 2am, and an alarm system will allow us to sleep longer and respond to emergencies.

Not yet, of course.  We still need to learn how trustworthy the device is, because complacency is not an option.  There have been a few hiccoughs - The Libre readings (which we trust) and the MiaoMiao readings have not always correlated - sometimes being wildly different. 

TD is happy to try this new tech.  She was delighted with how small the device is, and the ease of use.  She does not want us, as parents, to have constant access to her glucose numbers, so the app is on her phone only.  We respect that.  

It is early days.  We are holding thumbs this will be a great success and that technology will do some of the hyper vigilance for us.

And the idea of writing about tortoises is growing on me, so to whet your appetite for the next blog, here is a picture of Tolstoy for you: 

Tolstoy the tiny tortoise

 

 

 

 

What the Elves say

 

 2020 is being stubbornly relentless. No one knew how things would pan out when Covid 19 hit the world, and it has been a long, tough season of readjustment. Some people predicted it would come and go, and life would return to what it had been.  Others suspected it would be a long term, on-going change to our way of life.  Most people are just taking it in small chunks, because that makes it all manageable. I think it is the uncertainty that can be the most stressful - the social, economic and personal unsettling cause tensions to rise.

And just when you think you might be getting the hang of  whatever is going on, things change again, and new regulations are promulgated and safety precautions are suggested.

You know all this, because you are living through it. 

But everything I have written above is just what a Type 1 diabetes diagnosis feels like - stubbornly relentless, a huge readjustment, a hope it will go away, acceptance that this is for life, and managing it in small bites.  Covid 19 had a familiar feel to it for our household.

It takes time to adjust to living with a chronic illness, and just when you think you are getting a handle on it all, things change.  TD does an amazing job of navigating the course. 

Lock down has given people a chance to try new things, or catch up on some chores . I eventually made Banana Bread.  TD tidied her room.  It was like an archaeological dig in some places, and  she uncovered lost mementos and buried treasure.  This included two tubes of henna bought in Sedgefield many months ago.  I watched in fascination as she beautifully scripted some words on her wrist, in characters I could not decipher.  It was, apparently, Elvish, Tolkien's made up language from the Lord of the Rings. 

When she offered her calligraphy skills to decorate my wrist, I was delighted.  Here is what I chose to have hennaed on my wrist:

 

 

 

 

For those of you whose Elvish is a little rusty, it says Serenity and Courage.  I think those two concepts are helpful when dealing with everything that is thrown at us - the big and the little stuff, the permanent and the transient. Covid and diabetes.

Tolkien's writings are full of wisdom and advice.  One of TD's favourite quotes is "Not all those who wander are lost."  I love the idea of purposeful wandering, or even purposeless wandering.  It is calming and leads to creativity.

 The Tolkien quote most appropriate during a pandemic might be:

"I wish it need not have happened in my time," said Frodo.

"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."

Live courageously, Find serenity. Decide wisely how you want to live. Wander aimlessly for a while....

 

The Big Picture

We get great pleasure from wandering around our little garden every day, looking at which new plants are popping up, which are flowering and which are flourishing. Some, of course, have decided that this new environment is not for them, but the majority have been nurtured and talked to most days, and are growing despite our enthusiastic ignorance of horticulture.  Weeds abound too, as do mushrooms, as it has been damp (and we put down a mushroom top dressing). 

To get the best view, you need to sit on the bench in the shady corner and squint a bit.  That way you can see the whole picture, and the weeds and mushrooms blend into the greenery and fill the gaps.

I am finding it more and more important to look at the big picture these day.  There is no longer any point in getting hung up on the little details that don't have big consequences. Like traffic, or untidy rooms, and brusque strangers. This is probably one of my reactions to Covid.  The important things to concentrate on are Life and Living.

TD is back at school.  She goes every second day, having one week of two full days at school, followed by 3 days the next week.  Inbetween she does her school assignments and learning at home. So far - and it is early days- this is working well.  I can see the shift in TD's attitude to life as she is able to engage with her friends, and her work, on a more personal level.  It suits her not to have to rush in the mornings (school starts an hour later, and the traffic is light) and in the afternoons (all extra murals are cancelled.) At the beginning of the year, we asked TD to take a serious look at all her commitments and choose which she could let go, in order to calm the rushing stress.  She had trouble deciding, but Covid sorted that one out for her.  The only after school activity she does is her double bass lesson, and that is something she loves.

You have probably read all the news reports about people with comorbidities needing to be extra careful about avoiding the virus.  Sadly, statistics are showing the the most deaths happen to people who also have diabetes.  The following infographic was supplied by the Western Cape Government on the 9th June.

Supplied Western Cape government

You can see how scary this is for the T1 community. TD's endocrinologist, and the paediatric endos agree, that it is as safe for TD to go to school as it is for anyone else her age.  The bigger picture is that young people have a definite advantage  - they are likely to only have mild symptoms and recover quickly.  The other mitigating factor is that the diabetes needs to be well controlled.  This means we need to be extra vigilant to keep TD's average below 10.  This is a huge challenge in such a stressful, unusual time, so we need to be extra vigilant.  I am very grateful that we have resources and abilities to help TD manage her glucose levels.  She will just have to be patient with me forever asking her to check she is not too high/too low.  Moms worry.

The big picture is that the whole world -well, most of it- is fighting the fear of an unknown future. There is always the minority fringe who reject the unpalatable science for a more comforting fiction.

Our front garden is a contemplative space for me.  The weeds don't bother me, nor do the fallen leaves or the mole tunnels.  The whole picture, weeds and all, speaks to me of Life in adversity.

My thinking spot

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.

Load Shedding

After a couple of weeks of constant electricity supply, hope made us put away our gas camping cookers, candles and torches.  We were lulled into a sense of lightness.  But it was not to be.  My phone app told me on Sunday that we would be starting Stage 1 load shedding again.  It is the one function where the government is punctual to the minute, and at 12 that afternoon the power went off.

For those of you who are scratching your head, wondering about what on earth I am talking about, South Africa has introduced a time share scheme for electricity on days when the grid is under strain.  (due to lack of maintenance and bad management, but that is a topic for a different forum.)  We take it in turns to have electricity available.  Stage 1 is the least destructive – our area was off for just over two hours.  Things get progressively worse the higher the number.  To use a phrase that is quintessentially South African, stage 6 is “nag” *

We all understand that load shedding is the lesser of two evils.  If the grid were to collapse, life would be very dire indeed, so we need to share the load, to make things manageable.

When resources are thin, sharing the load is indeed a good idea.  Whether that concerns work, parenting, house maintenance or any other task really, if the tasks are shared, the benefit is not only that more than one person helps, but more importantly (for me) , the idea of responsibility is not left up to one person.  We need partners in tough times, to understand, care and lend their energy. 

Dealing with any chronic illness is stressful, particularly if that illness has no chance of recovery.  Type 1 diabetes is one of these.  The best that can be hoped for is good glucose control, so that the other complications/illnesses don’t kick in.The grid is constantly under strain, so to speak.  This is where load shedding comes in.  We, as a family, need to work as a team so that the day to day,( and night to night, ) diabetes management does not put one of us, especially TD, straining to melt down point. 

My personal load shedding techniques include writing, talking and allowing myself to spend time in nurturing spaces. These help restore sapped energy.  That is my way of re fueling myself when times are tough..  So to those of you who offer support to us as a family and me in particular - thank you for giving strength and stability to our grid. 

 

Load shedding is a lot easier if it is predictable.  We have print outs of when our electricity supply will be cut depending of what stage we are on.  We have apps.  But every so often unexpected breakages occur at South Africa's power stations, and our best laid plans are disrupted.  It is very frustrating.  In the middle of a carefully planned schedule of when to do what, we are once again plunged into darkness, losing whatever we haven't backed up on the computer, the clothes washing half washed, and garage doors that won't open. 

 

Optimally, maintenance and repair should be on going, so that nothing breaks down.  Money should be spent on creating new power sources, preferably renewable, but life of a T1 doesn't always work that way.  Sometimes it seems there isn't time for some maintenance down time, and we rush from crisis to crisis.  This needs to change.  If we spend more time planning for long term health and happiness, things will be calmer. 

We had an unexpected interruption last week.  TD was diagnosed with glandular fever.  As her immune system is compromised. (T1 is an auto immune disease.)  she catches a lot of illnesses that float around.  That’s what makes the current COVID 19 virus threat even more scary.  The virus is worse, I believe, for those people with existing medical conditions, so you can understand that our alarm bells clang a little louder than they would if TD were completely healthy.

Personal load shedding can be a good thing  if you have the right support structures. We can take it in turns to be switched on or powered off. 

I am off to get the camping gas stove out of the garage again.  It's time for tea.

* "nag" is an Afrikaans word, that literally means night, and colloquially means Very Bad

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

A Sharp Decline

We have just been to Hel and back.  There is only one way in – a treacherous, seemingly never-ending, winding road with dangerous corners and ledges that are too close for comfort, and there is only one way out – returning up that self same dangerous route.

We journeyed there for a few reasons.  The scenery was, apparently, breathtakingly beautiful and the destination promised to be an oasis of tranquillity.  We were lured with images of complete sanctity, and of a challenge to travel a road fuelled by adrenalin.

The road to De Hel is only 37 km long.  There is a sign post at the start informing travellers that the route will take over 2 hours to complete. 37 km – that seemed doable.  The road is a rough stone path with a river or two to cross.  We lurched from side to side, inching forward for what seemed forever.  Just as we hopefully crested another pass, hoping to see the river bed, more mountain ranges and winding roads snatched all hope that the journey would ever end.  It did of course, after many false hopes and some despair.

The final pass, called Eland’s Pass, was the most harrowing (and breathtaking) of all.  Sheer cliff faces with hairpin bends made for a rapid descent and a sharp decline.  At this point we were grateful not to meet any other vehicles – someone would have to give way, and there was no place to go.

We stayed in the valley overnight at a Cape Nature cottage.  It was a further 10 kilometres into the reserve, but the end was in sight.  A handful of cottages have been restored sympathetically to their 1800s construction.  It is hard to believe anyone would choose to live there (a couple of families still do).

Cape Nature had left a few books in the living area of the cottage.  One was the visitors’ book, which warned guests about the danger of baboons invading the house if they smell food.  Another was a coffee table type book that explored the Karoo region.  The page about De Hel said something like:- If you have the time to go to De Hel, rather use that time more wisely and go somewhere else!!!

The trek out of the valley was less daunting.  We left behind the cries of the baboons, the arguments the other family staying near us had in loud voices, and the desolate environment.  We were familiar with the route and could look forward to a village stayover that evening in a more comfortable place.

The whole adventure is a metaphor for me.  The road into dark places is uncomfortable and dangerous.  There is no warm welcome at the bottom, and the only way out is to travel back along the same track, clinging on to familiar markers and hope of gentler place to stay when we emerge.

The best, of course, is to take the guide book’s advice and use the time more wisely by going somewhere else, but that is not always possible.  Use the hiking rules if you find yourself embarking on this journey – never ever travel alone, always tell a friend where you are going, keep three points of contact with the ground at all times, and take some warm clothing. 

Winding road down into De Hel valley

I am glad I have seen De Hel.  We can tick it off the bucket list.  It was not kind to glucose numbers (which may have been elevated to start with because of a zip line adventure at the Cango Caves earlier that day…..).But we took some photos of the stunningly beautiful nature and have lived to tell the tale.

In the next blog I will tell you all the wonderful things we did on this road trip.  I just had to get this out of my system first.......!

TD's Birthday Bash

TD turned 16 in the middle of March.  And how grown up she is! As we always do, we asked her to decide the theme for her party, and this year she chose (and which 16 year old wouldn't) PIRATES.  She felt she had missed out on this theme when she was 6, so 16 was a good time to catch up.

This presented a bit of a challenge. Sixteen year olds require a little more than the usual sweet treasure hunt in the back garden and cardboard swords and parrots and rainbow jelly.  All party planning starts with a good breakfast:  Andrew and I choose a cafe, take reams of paper and a couple of pencils and plot out possible party activities.  Ideas tend to start on the grand scale, and thoughts of building a garden size Pirate ship, of firing cannons with real gunpowder, and walking the plank all seemed like good ideas.

Google disagreed.  Apparently gun powder is dangerous and not recommended for home use.  Giant ships take a lot of wood and a long time to build. Walking the plank may not seem like fun to young pirates.  We needed a second breakfast.

Andrew building the ship late at night....

We raced up to party day, fitting in family commitments, hectic work schedules and all the party prep.  But by 6pm on Friday, all was set and the Jolly Roger flags were hoisted.  TD has delightful friends (and a large number of them.)  They all entered into the spirit of the Great Piratical Rumbustification (thanks Margaret Mahy for a fabulous children's book with that title) with great enthusiasm.  We did shoot cannon (tennis) balls at a 2D Pirate ship.  The cannons were spring loaded, so no novice pirates were harmed in the shooting of them.

The main activity for the evening was making treasure chests.  This required a fair amount of preparation and huge dollops of bravery on our part.  Twenty five teenagers wielding hammers, aiming at small nails, using superglue, grinding off sharp nail points proved to be a loud festive occasion - a true Birthday Bash.  The results were astounding.  The treasure chests looked great, but that is not what I am referring to.  The result was a group of 16 year olds co-operating with each other, chatting as they worked, engaged in the moment and being creative.  The astounding result was a celebration of TD with a symphony of hammering.

Andrew and I needed more hands on deck for this activity.  It takes really great friends to arrive on a Friday evening, who don't mind crouching on the dining room floor and a lot of noise. They helped the learner pirates with the basics of carpentry - like which way round a nail goes, and how to remove a wonky tack, with making sure everyone got the right pieces at the right time, and with serving the pudding and answering the queries when our hands are full.  Me Hearties Kathleen, Natalie and Paul ye be fine buccaneers - thank you!

The treasure chest I made may look empty at the moment, but really it is filled with happiness and unseen treasures of thankfulness that we could celebrate TDs 16th birthday.

And diabetes?  It was there, but just for the evening we told it to Walk the Plank.


PS I realise that some of you may be a bit disappointed that diabetes is not the main focus of all my posts.  There is a reason for that.  But if you are looking for more information and some excellent blogs, please have a look at https://blog.feedspot.com/diabetes_blogs/

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. 

Now serving number P326 at Counter 5.....

I am lucky in that I get lots of time for reflection, people-watching and day- dreaming.  All in queues.  I am a regular at the local pharmacy, as I have to pick up TD’s monthly supplies of insulin, needles, testing strips and allergy medication.  There are usually several other trips during the month to cater for the normal household medical needs and aches and pains. 

 

Government Prescribed Minimum Benefits (PMBs) means that our medical aid is co-erced into paying for TD’s two types of insulin, the glucose testing strips and needles. Strangely, they won’t pay for the Glucagen Hypokit for unconscious lows or ketone strips to test excessive highs, despite the fact that these could prevent hospitalization of TD, which would have a far greater cost to them than the preventative medications and tests.  But who am I to fathom the logic of the corporate insurance giants.

They pay for 200 testing strips a month.  That is usually sufficient, except at times like the past six weeks when the roller coaster of mostly highs has meant TD has needed to test many more times a day, and so she ran out before the refill date.

Medical Aid allows me to pick up stock 4 days before a full calendar month.  So I have learnt how to time my visits to maximise the benefits, I have learnt how to deal with repeat scripts, how long a script is valid, when re-authorisation is likely so that I don’t get caught out and the medicine can’t be issued.  That sort of thing.  I have also learnt to take a small cooler bag with an ice block for the insulins, to keep the cold chain intact.

But mostly I have learnt to be patient.  I go with the thought that everyone – pharmacists, medical aid reps, doctors, moms(!) are all doing their best .  Sometimes there are glitches in the system – medication is not available or they only have partial stock; the system won’t issue without the latest Hb1c confirmation; the pharmacy is having a slow day.  It used to make my heart sink.

So I decided to use the time as my “medicine”, to practise meaningful breathing (try it – deeply and consciously breathing has got me through more than one unhappy day!).  I suppose it is no co-incidence that someone needing medical attention is called a patient.  If Time is a great healer, the pharmacy is nothing short of a miracle centre.

It must be a tough gig dealing with sick people all day, because most of us are not at our social best when feeling under the weather.  So, although I can’t say I look forward to long waits at the pharmacy, I can take a philosophical view, and be grateful that there are life saving drugs and knowledgeable medical people available to help TD and keep her alive.  Sitting in a queue is

really a very small price to pay.

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!

The force for good

We have had a charming house guest these past few days - one of those people who simply fits in and scatters calmness and compassion.  He is vastly knowledgeable in a wide variety of fields and a born story-teller.  One of his work lines is acting.  A few years ago he played Alfred Nobel in a short piece on the Smithsonian channel.  He looks the part!

Alfred Nobel

Alfred Nobel started his world famous prize to recognise people who add to the collective goodness in the world – those who become a force for good. He did this because his death was greatly exaggerated; so much so that he got to read his own obituary on the front page of the newspaper, and the heading called him the “Merchant of Death.”  (his brother had died, but the papers had got the wrong information.)  He was so horrified that this perception of him would be his lasting legacy that he set about using his huge wealth to create good.

Nobel prize winners are all great and famous, and all have been chosen for their good work in creating a better world – through peace, science, medicine, literature.  Not everyone who helps create peace and a better world gets international recognition though.  Some people don’t even get a nod of encouragement, and I wonder if they even know how important they are,  because every act of kindness creates ripples of goodwill that are far reaching and essential to world cohesion.  Seemingly small acts can breathe life into a difficult day. 

The kind whatsapp messages checking up on us, the people who bring beautiful flowers, the people who listen and hear us, the people who phone and chat, everyone who reminds us that community is strength and peace is a group project – thank you.

I have always been over awed by the butterfly effect: The saying goes that when a butterfly flaps its wings in some part of the world, it influences the greater events on the opposite side of the world.  It is used as a metaphor that a small change in one state determines larger changes in other spheres.  Small acts of kindness influence the whole world.  Never underestimate the power of good.

If you would like to see the clip about Alfred Nobel (it's under four minutes in length and very interesting!) here is a link:

https://www.youtube.com/watch?v=Yz_c4j8NcDI   or type Smithsonian Institute Alfred Nobel into Google.

Happy birthday TD!

TD had a good day yesterday.  She was beaming and bubbly and full of what I call TDness, or essence of TD!  It was her birthday, and her school friends had decorated her satchel with streamers and ribbons.  Some had hand drawn beautiful cards.  Others had written the kindest messages.  She felt celebrated and loved.

Her TDness rubs off on others too.  On occasions, complete strangers have stopped us in shopping centres, to comment on her happiness and joy.  Her grade 11 sports coach told her that she had “a big smile, lots of friends and diabetes” after her last training session yesterday.  (Her school has a collective sense of humour which helps make it the fine institution it is.)

She is now 15 – well ensconced in her teenage years.  She is a giddy mixture of old world wisdom, youthful optimism and age appropriate cynicism.  She does come unstuck at times.  Sometimes she is just too tired to give the world her TDness, and she needs time to gather her thoughts and rest. Like all of us.  She was so tired on Monday evening that, by mistake, she injected the wrong insulin at bedtime.  Luckily she noticed that she was injecting Apidra (quick acting insulin used to balance the carb ratio at meal times) instead of Lantus ( the basal injection which runs in the background with a slow steady stream of insulin).  This is the first mixup in three years, but it is a scary one.  If she had not noticed, and gone to sleep, she would have gone way too low and…. I don’t even want to think what may have happened.  It was easy to remedy in this case – a glass of sugary drink and a slice of wholewheat bread (quick and slow release carbs respectively) and a blood test every couple of hours or so, and all was well.

We celebrated her birthday at her choice of restaurant last evening, and wandered around the Waterfront, reminding ourselves how beautiful Cape Town is, and how lucky we are to live here.  As usual we missed our son and thought of him while we were celebrating.  He sent her the biggest bunch of beautiful flowers.(Pictured)

Time marches on.  Fifteen years ago TD was new to the family, a delightful bundle of gurgles and perfection.  Nothing much has changed – she is still that delightful - but bigger-

bundle of gurgles and perfection and I am so grateful to have the chance to mother both my children. I acknowledge them as the greatest life teachers anyone could hope for.

(I know "perfection" seems like a heavy label and responsibility.  I don't expect perfection from my children. It's not about what they do - rather about who they are.  They are perfect at being themselves.)

Happy birthday, TD.  Wishing you all the happiness you give to others reflected straight back at you. Put on those new sunglasses – that reflection will be quite dazzling.

Telling you how I am feeling

A few thoughts (not grand enough to be called Life Lessons!) I have learnt so far from Mothering Diabetes

1.                Never underestimate how well people can adapt to challenges  One minute TD couldn’t stand the sight of blood, and injections left her quaking in the corner.  The day after diagnosis, she learnt how to do all her own finger prick testing and to inject insulin into her stomach and legs several times a day.  We as parents learnt to cope with a range of fears and horrors that we would wish on no parent whatsoever.

2                  Going to  social occasions can be interesting.  People's reactions to TD"s pricking her finger and injecting insulin vary from the curious to the doubtful.  Kind friends have even offered to eat her chocolate, telling it was not good for her health.

3                   Give each other space to breathe and, at the same time, hold each one close. Trust is a way of life.  We need to be able to trust ourselves to be doing the best we can.  We trust TD to look after herself.  We trust the greater universe in TD’s safe keeping.

4                  You  will deal with challenges in a unique way.  Learn from others, but don't be scared to follow your own path. Everyone has different ways of dealing with difficult situations.  What works for one family dealing with a person with diabetes doesn’t necessarily work for another.  People react differently in crises, and that’s ok. 

5                Up until the teenage years, boundaries are more easily defined.  Children are often more compliant than teenagers, as is the usual path of life.  There's a fine line between independence for a teenager and responsible parenting. Independence is so important, but so is being safe. 

                 

6                Never sweat the small stuff.  Sometimes we need to look at the bigger picture and not worry about the occasional slip ups

7                  Going to sleep may become a challenge, but the quantity and quality of your sleep will determine how well you function in your waking hours.

8                 Let your body communicate with you, and listen!  Never underestimate the mind/ body connection.  We have the numbers to prove it. Stress, tiredness, excitement, apprehension all influence TD's glucose readings.

9                You can be spontaneous, as long as you plan it meticulously.  It's lovely just to get up and go, but remember to pack the insulin, the glucose meter, the emergency kit, extra carbs, a few needles and spare batteries....

 

10        Down  to earth is an excellent policy.  Being sensible with the diabetes management takes a lot of stress out of it all.  Be practical, avoid panics and stress, and the glucose graph will thank you.

So this is the part where I should tell how you how grateful I have been to have had the opportunity to learn these lessons through TD’s diabetes.  Absolutely not.  I am not and will never be grateful that TD has T1.  It is an appalling disease and I wish no-one had it. It didn’t happen “for a reason”  It isn’t "a gift”  It is not a “learning opportunity.” It is an illness.  Life lessons can be learnt in so many ways that don’t involve my daughter’s daily life and long term health. 

Sometimes the best life lesson is just to hang on to your sense of humour.   If you have read between the lines, and understand my quirkiness, please send me a smiley face!!