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.

 

 

Ketones and covid

Ketones.  The word has a  lyrical sound.....It makes me think of a music flowing pleasantly from appealing chords to melody, or of soft palettes of colour for creative expression. Ketones are not benevolent or pleasant though.  At least not for people with type 1 diabetes. (There are some  pancreatic-enabled people who choose a ketogenic diet of low or no carbs and high fat.as a weight control method) 

Essentially ketones are toxic acids.   Glucose is our usual source of energy, but if that glucose can't be used in the blood (that's the role of insulin), the body looks for an alternative source of fuel - fat. The liver processes fat into ketones and sends them into the bloodstream. People without diabetes can handle this acid in the blood, but for people with Type 1, the acidic build up  together with high glucose that can't be processed, is a life threatening situation.  It leads to DKA - diabetic ketoacidosis.  DKA can  cause damage to the lungs, brain and kidneys. It is to be avoided at all costs - it can be deadly and requires hospitalization.  

TD's glucose levels have been on the high side for the last while.  At the end of the year we met with the endocrinologist who thought TD was doing a good job of handling the stress of a pandemic, exams and diabetes.  2021 has not been the new start so many were hoping for, it seems to be a continuation of the 2020 mess with the promise of some light at the end of the tunnel.   TD's glucose numbers started to rise ....and rise... until last Saturday she was feeling lethargic, tired and couldn't bring down the glucose from 20s.  We needed to test for ketones. 

TD's glucose meter has the facility to test for ketones using a different test strip.  These strips are fairly expensive, and not covered by medical aid, so we don't keep too many in the house.  As luck would have it, the few we did have had expired, so TD (exhausted and dejected) and I  (anxious and flustered) went in search of more.  (I could not leave her at home in case she deteriorated and needed help).  The first pharmacy offered to order some in, and I could fetch them in a few days time.  The next had a ticket queue of at least 90 minutes wait.  It was quicker to drive the 15 minutes to a pharmacy that I know stocks  them on the open shelf.

A safe ketone reading!

Long story short, there were only trace ketones in TD's blood and we could relax a bit.  Getting the glucose down took a lot of patience, jugs of water and more insulin than she would usually inject in 2 days. 

But it worked, eventually, and the lethargy, dizziness, anxiety and fatigue subsided, and TD could carry on with her weekend.  This will always be a part of TD's life.  She will always have to keep control of her glucose, and avoid the highs as much as the lows. 

 I wish type 1 diabetes were preventable, but it is not. 

I wish avoiding it were as easy as obeying a few rules, like wearing a mask, washing your hands and social distancing, but it is not.

. Life throws us so many things we are completely unable to control.  So when we are given a challenge (like covid) that allows some measure of being able to keep ourselves safe, grab the opportunity to stay healthy with both hands. Please.

TD was in DKA at diagnosis.The build up of ketones and glucose was so high that she was in critical danger.  She survived because a dedicated pathologist ran her tests at night and phoned me at 2am to urge me to rush her to Emergency. She is alive because the insulin that was dripped into her saved her life. The kindness of the doctors and nurses surrounded us when we were  overwhelmed and bewildered. 

It is our turn to show that same dedication and responsibility towards the medical community.  Most of them are feeling overwhelmed and bewildered at the sheer number of people who need their care, and of the loss of life they see daily.  Keep being aware of the dangers of covid.  Keep the preventative measures as daily habits.  Keep safe.  Please.

 

 

 

 

 

 

 

End of year blues

In the digital age, this family still relies on a paper calendar.  Each year, usually in October or November, I print out 13 A4 sheets of different coloured papers and create a write-on calendar for the following year.  Each day gets a block, and the family knows - if an event is not filled in on this paper calendar, it isn't happening. (The 13th page is for January the following year - I like being prepared).  I finally managed to motivate myself to do this task today, and I filled in all the recurring important days like birthdays and anniversaries, added the public holidays, and tentatively filled in the school terms in pencil.

I am not particularly hopeful that next year will be a smooth ride - certainly the end of this one has been a train crash, covid speaking. The numbers are alarming.  (Statistics are theoretical and so removed from feelings; having a sibling in hospital on oxygen fighting to get his breath is a real game changer, emotionally speaking.) 

It has been a year when not much has worked.  The permanence and reality of life circumstances, including covid and diabetes, really got to to me a while ago. I think everyone gets end of year fatigue, and this year it is compounded with worry and loss.  One startlingly good thing has happened to my family in the last week: R managed to get home for a  holiday from the UK.   It feels so good to all be together for a short while.

Something else that didn't work towards the end of this year were the Libre sensors that TD uses to read her glucose.  Apparently a bad batch  had been manufactured, and we got 4 of them.  As a result (we think), the MiaoMiao alarm system we were hoping would allow us some extra hours of sleep, did not work either.  Abbotts replaced the sensors - after a lot of questions from their call centre, including did the patient need hospitalization or go into a coma because of the failure.  The MiaoMiao rep was kindly and concerned, but thought it must be a software problem. The upshot of this tech failure has been some high glucose numbers, some sleepless nights and a general mistrust of  reliability of tech.  Bad tech can be worse than no tech, in some cases. 

Next year is round the corner.  I feel I will be starting the year with an energy deficit created by the general upheaval of 2020.  I have read  the Facebook posts that say it is ok not to be ok, or that not everyone is cut out to make banana bread, and I find I am past platitudes.   They lack honesty and simplify complex matters to the lowest common denominator.

I think I need to fill in some Breathing Space days on my new calendar.  Covid, diabetes, tiredness are long term situations. with no end dates. They are situations that need to be managed. 

I wish us all a better 2021.  

An update on Tolstoy the tiny tortoise:  The antibiotic drops prescribed by a kindly vet have worked wonders.  Tolstoy can eat again and his eye is so much better - almost back to normal.  He is able to wander around the Fynbos garden, and is living his Best Tortoise Life.

 

 

 

 

 

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.

"We called him Tortoise because he taught us."

 A promise is a promise - it's tortoise time.  One of our family rituals, is playing Hide and Seek with 5 of the 6 reptile members of our family.  Well, just Seek really.  They are incredibly good at "disappearing", sometimes only letting us find them after a few days.  I love how when they know they have been found, they simply stop, completely still, and retract their heads into their shells.  It's the "if I can't see you, you can't see me" defense mechanism that a lot of species, especially humans, employ.

This is Olaf

  Speedy keeping safe

So - some introductions:  Thadeus (who strictly speaking is a Thadea) grew up in Andrew's childhood household, and has been part of the family longer than I have.  She is a gentle soul, a bit of a leader, confident and comfortable in her own shell.  Speedy was rescued by my sister when he was so very tiny.  A dog had damaged his shell in several places and so he is more vulnerable and
exposed.  He hides a lot, and is skittish, and is only just now venturing further into his fynbos buffet garden.  Tolstoy - you have already met - and Olaf are the babies of the group, and heart meltingly gorgeous.  Tostoy is the tiniest, and the friendliest of them all.  Olaf is the best hider of the group. And then there are Bruin and Brown.  These two were rescued from a boutique hotel that was closing, and rehoused with us by American friends who were staying there and concerned for their well being.  Bruin is an easy going, get-on-with-everyone type.  Brown is not.  He is so aggressive that we have had to give him a separate patch of garden away from the others.  Every now and then we try to integrate him back into society, but his physical aggression is nasty, and he tries to hurt the others.  He hisses at us, and clearly had an unhappy childhoood.

TD once had to wear a tortoise for a week. Before technology had become so sophisticated and accessible- way back in 2017- TD's endocrinologist was worried that some hypoglycemic events (low glucose) were being missed and this could put TD's life in danger.  So she attached a "tortoise" to TD (her terminology, not ours).  This was a closed system Continuous Glucose Monitor, meaning it gathered and stored glucose information in the sensor, but was only read by the endo at the end of the trial period .  She could study the data, together with a food and activity diary, and give feedback.  These days, technology has moved so fast that the CGM gives immediate feedback, and TD can adjust her insulin accordingly. The 2017 device was called a tortoise because of it's shape.(and to make it less scary to children....)  And maybe because of the slowness of getting data.

I know tortoises are thought of as slow animals, but in my experience, if they want to, they can rumble over rough terrain at quite at pace.  Aesop's fable of the hare and the tortoise has the slow and determined tortoise plodding on to win over the overconfident faster competitor.  Consistent effort leads to winning the race is the supposed moral of the story.  But life isn't a race to be won, is it.  And we are not competing with anyone.  Diabetes has taught me that there are times to be slow and methodical, and there are times when speed is essential.  Yet again, it is all about balance and context, I suppose.

If you want a fix of gorgeousness, we can organise a Zoom meeting between you and a tortoise....although for most of the meeting you may just be staring at some fynbos, until a tortoise appears.  Trust me, it's not a bad way to spend an afternoon.

Thadeus

 

 

 

 

 

 

 

 

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

 

 

 

 

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/

The Rabbit under the bed

Arriving late to a funeral is bad form.  Our timing was all off on Sunday, and we were running spectacularly late for a lunch in celebration of Andrew’s Aunt’s life.  The family are the kindest, gentlest, most welcoming people in the world, and they were not bothered by our tardiness at all.

One of the reasons (but not the only…) we were behind schedule was because TD had a low.  She plummeted from 3.5 (which is already low) to a staggering (literally) 2.3.  The Super Cs didn’t touch it, so she had a Chocolate Gu (a brand name for flavoured glucose).  Barely able to walk, she staggered to the car and we set off.  The effects of a low can last a long time – much longer than it takes for the glucose number to rise.  She was feeling off well into the afternoon.

There was a lot of emotion flowing at the luncheon.  Aunt Hazel had died surrounded by her family, in a home she loved, with a bunny under the bed. (It’s a free range rabbit I was told, and often naps on the bed in the afternoon sunshine.)  Andrew’s cousins and some of the grandchildren spoke of this remarkable lady who set out to enjoy every minute of her 92 years.  It was a profoundly simple and honest celebration.

Death is a difficult topic to broach on the best of days, and yet it shapes so much of our lives, and how we see ourselves.  Time becomes consciously precious, a limited resource.  A gift if you like.   

To be brutally honest, one of the consequences of a person with diabetes going too low is Death.  It does not happen to many people, but it does happen.  How do you not frighten a teenager with this thought while still imploring them to look after themselves?  Yes – teenagers die of many things – accidents, abuse, illness, the proverbial bus…. Diabetes just adds one more liability to the list.  I have told TD it will not happen on my watch, and I am determined to keep that promise.  And she will play her part in looking after herself and asking for help when she needs it.  You see, when she is low, her behaviour can be erratic – a mixture of utter fatigue, shakiness and silliness.  And at night when she is low, she is asleep and looks just the same as when she is not low and asleep. 

I imagine any parent cannot bear the thought of anything awful happening to their child.  I know I can’t.  And while I can live my life and carry on with daily routines, diabetes lurks under the surface of our family, like a monster under a child’s bed.

The fear of monsters is the fear of the unknown and dangerous.  If we can acknowledge our fears, and drag them out into the open, maybe the monsters will turn into something softer and more comforting.  When TD and I needed a little space at the celebration lunch, we went to talk to the rabbit under the bed.  I think looking for the rabbit instead of the monster might just be a calmer way of living.

 And to Hazel : your legendary zest for life is an inspiration.

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!

Odds and Ends

Today is one of those odd days, after the festivities have ended,  the new year hasn't quite begun and we have said another goodbye to R after his short Christmas holiday. Things feel a bit hollow and tired.  The tired bit may well be because we packed a lot into our time together as a family.  We went to a couple of shows, a movie, an archery day, ate far too much, shared time and laughter with family and friends and generally feasted well.  The nagging sadness of not having Mom around to share all this is hard to get used to.

There are other moments of thoughtfulness during this traditionally "happy season".  TD's T1 diagnosis was 4 years ago, just before Christmas on the 22 December.  Each year it seems to stop me short, both in gratitude that she is OK, and sadness that she has to deal with diabetes forever.  This year on the 22 December we were at the theatre, watching the most magical musical - Matilda.  It is a wonderful production (do yourself a favour and get tickets if you can !!)  Based on the Roald Dahl story, the young Matilda is enveloped in love and support by her teacher, Jenny Honey.  One of Miss Honey's songs is about having the courage to face up to people and situations that are difficult and unpalatable (She sings "Just knock on the door, Jenny" when she needs to confront the head, Ms Trunchbull, and is too scared to enter the office.)  I think that might be a good motto to start the new year with - just knock on the door.  It's a start, and often what's behind the door is not as bad as the anticipation of setting things in motion.

I think this is how TD feels about the CGM.  She has been wearing the Continuous Glucose Monitor for three weeks now.  The sensors last two weeks each, so although the endocrinologist showed us how to "click" the sensor into her the first time, the switch over was a little nerve wracking.  But it really is quite easy.  It comes in a kit with a sort of stamp or punch which pushes the filament into the interstitial fluid.  It sits on her upper arm, and -here's the best bit- it needs no calibration, so TD has not had to do a finger prick blood glucose test in three weeks.  That alone feels like a huge liberation.  She holds a reader up to the sensor and immediately can see not only her current glucose level, but also the patterns emerging from all the data AND the reader indicates if her sugars are going up, down (or are stable) and how quickly.  Seeing the trends is the big plus so that we can work out what works best for TD.  This is a door I am glad we knocked on.

The Libre Freestyle CGM in action!

So the year ends, and for me it has been an odd one.  The good bit about feeling that things are a bit hollow at the moment, is the potential to fill that hollow gap with whatever we choose.  I think making happy memories makes the most sense - everything else is fleeting and transient.

And with philosophical thought I will end my odd year and wish you all a very happy, memory creating 2019.

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.

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!

But it is only September....

2017's attempt

 

2016's look

For the past few years, I have approached November with a bit of a sigh.  Andrew has taken on the challenge of Movember – growing a moustache to raise awareness and fundraising for prostate cancer.  The hairy upper lip is not my favourite look on him to be honest, and he hams it up by choosing outrageous styles which he cultivates with great care.  I count the 30 days and tolerate this hirsute project.  But this year, I will not sigh, because this year it is personal.

Andrew was diagnosed with prostate cancer in March.  It has thrown us all a bit, not least him.  I can write about it now, because in July he had surgery to remove the prostate and on Monday we got the good news that he is probably clear.  Sometimes, whilst enduring something awful, I find it easier just to shut up and bottle it all in.  When the crisis is looking less threatening I can articulate how it was – that is just the way I am.  The surgery went well – Andrew’s doctor is one of the few trained and skilled in robotic surgery for the prostatectomy.  So instead of a very long scar down his abdomen, he has five smaller wounds.  He was booked off work for four weeks and – for someone who uses every second of every day –  I was a little surprised and grateful that he slept for most of it. 

It is hard to describe what it feels like to watch a partner fall ill with a dread disease.  Lots of things spring to mind: Like all the dreams and unfulfilled projects that we really should have given more time to: Like what is really important in life and how important balance is;  Like are we practically equipped to deal with illness.

We had a policy – we would tackle whatever was thrown at us together.  So I go with to all the doctor’s and physiotherapist’s appointments, make notes and talk about all the possibilities with him.

There has been a lot of sadness this year, and a lot to cope with. 

This November I will embrace the month of the moustache with much more enthusiasm.  Andrew has been very good about spreading the word to all people who will listen – Men- get your annual PSA level checked.  Take your health seriously.  There is nothing embarrassing about body parts and functions.  Talk about things.

I am very grateful for the skill of the medical community in Cape Town.  Andrew’s next check up is in 6 weeks.  We are hoping the good news continues and we can breathe a little easier.  Both this cancer scare and TD’s diabetes have made me realize we shouldn’t take health for granted.  

Carpe diem, and all that…..