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…..

Target practice

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

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

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

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

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

Marketing magic

TD is a dedicated Harry Potter fan.  She has been "sorted" into the correct house for her personality, (Hufflepuff), and knows her Patronus (animal-spirit) thanks to the online quizzes available to help with these things.  Obviously, she has read all the books, seen the movies and follows the actors' careers.  Emma Watson holds a special place in her heart for her views on feminism.

So it goes without saying that when we were in the UK,  TD was keen to immerse herself in Potterish paraphernalia and places. One can book a tour designed to delight fans by taking them to the set, the Great Hall, Dumbledore's office, Diagon Alley and much much more.  Knowing the market well, the organisers of these tours charge an arm and a leg per person and effectively magic away many pounds from your wallet.  So we decided to do it the DIY way.

Platform 9 and three quarters is a piece of wall cordoned off at Kings Cross Railway station.  There was a long queue of young wizards and muggles waiting to have their photos taken at this particular piece of wall.  We offered to wait for TD if she wanted to join the queue, but she was happy to have her photo taken on the outer side of the cordon and use her time more wisely in the Harry Potter shop situated next door.  We wandered around, examined the expensive merchandise and marvelled at the power of marketing.

On another day we made the pilgrimage to the Oxford Street Primark.  There was a treasure trove of affordable  goodies, and TD splashed out with her carefully hoarded savings.

While I was in Cape Town, the travellers did a road trip to Scotland and stopped at the Harry Potter Bridge.  (Well, in real life it is the Glenfinnan Viaduct near Fort William.)  Andrew, weaving magic of the real kind, had looked up the train timetable, and timed their visit so that they could see the train crossing over the viaduct.  TD was most chuffed.

 I rejoined my family in Cambridge, and that for me  was like entering a magic world.  We were lucky enough to be allowed into Trinity (our son's college) and the magnificent dining hall outranks any film set Hogwarts hall.  Academics, with their gowns flowing behind them, briskly walking on cobbled streets, magically sends one's imagination into another world.  And yet, it is real.  This is how the students at Cambridge live - in a town with ancient, magnificent buildings, narrow cobbled streets, magical book shops and plenty of muggles taking photographs.

Marketing magic is a profitable business.  Every now and then an email pops in my inbox offering a cure for diabetes T1.  These range from ActoBio's cheese producing bacteria to extreme diets to social activities to acupuncture, and they all need elements of magic to work.  Mostly people look at ways of managing the sugar/insulin see saw, and the diet option, acupuncture, social activities are very important for keeping numbers level, but a cure?  Big pharmaceuticals are pouring money in to research.  The same companies that make millions from selling life sustaining insulin are hoping to offer a medicinal cure. There is obviously a mind boggling amount of profit to be made.  So while we wait for science to find a way to kick-start a pancreas into making insulin, I will save my magic for the worlds of Harry Potter and Cambridge, whilst still keeping an open mind about a cure for diabetes.
  

Harry Potter's author, JK Rowling, says it most eloquently: " We do not need magic to change the world, we carry all the power we need inside ourselves already: we have the power to imagine better."

Grief and loss

Some sadness is overwhelming.  TD's beloved grandmother - my Mom- died on 6 July.  It has always been hard for me to imagine a world in which she does not exist, and now that time has come.  The image that swirls in my head is one of interlocking circles - never-ending patterns of love, life and eternity.  And like a Boolean set, there are areas of overlap.  If I close my eyes tightly these circles twist and gently sway and, like a wave rolling to the shore followed by a never ending supply of new water, the image gives me some peace and calm.

We were overseas when my mom died. We were there to  have a holiday and to celebrate our son's graduation.  Everything about the last month has been extreme - depths of sadness, immense joy, complete disorientation and a bit surreal .  The weather in the UK was very hot - a symbol, I think of the extreme vitality part of the last month.  Cape Town has been cold and wet - matching the sombre, sad happenings here at home.  Extreme summer and extreme winter to accompany my extreme feelings.

People have been so kind to me.  Chats, messages, meals, flowers, lifts to and from the airport and offers of any other help, have all eased the sense of loneliness that accompanies loss.  I don't think the enormity of that loss has fully hit home yet - there has been too much to deal with for me to allow myself to relax into grief (as strange as that sounds).

 I flew home mid holiday to be with my family.  TD, Andrew and our son carried on with the road trip around Scotland.  They had many adventures, and it was good for TD to know that her diabetes can be a happy international traveller and not restrict her life.  I missed them all, but managed to return in time for the graduation. 

I have been thinking about the gifts of being mothered and mothering.  Both are experiences that define me.  It was hard to write an eulogy for my own mother - how do you condense 84 years into two pages.  I tried to find the essence of my mother, but that proved a difficult task.  Here are some extracts from my thoughts:

Our mother was a teacher.  Being an extra bright, extra studious child, she  finished school when she was just 16 and by age 18 she had qualified and started teaching.  And it has been a life long vocation for her - she has taught in a variety of schools in Cape Town, had a year supply teaching in London in her youth, and after retirement has continued to be a teacher to all who encounter her.  She has taught us so much – about compassion, resilience and gentleness.  Her life has been an example to us all.

If one word could sum up a person, I would use the word “Family” for our mom.  We – her four children and our partners, her 10 grandchildren her beloved husband – were the focus of her love and energy.  She would cart us from extra mural to extra mural, cook a home cooked meal every night and a roast on Sundays, take us to far flung libraries when we had out read the little library in our community and take us round all the museums in the holidays.  This on top of a full time career.  Special occasions, like birthdays, were celebrated with adventurous parties, lots of food and friends all gathering.  I am sure that any of you who have been to a family birthday will understand and appreciate what a musical family we are – our rendition of Happy Birthday is famous in the neighbourhood and mom loved the togetherness that our quirky traditions brought.

She not only taught us about the importance of family and togetherness, she also taught us about community.  Mom loved people.  She loved their stories and cared about their well being.  Many an hour was spent on the phone catching up with friends and mom went out of her way to make people feel included.  Many of you here will have been touched by her kindness and concern.  Many of you would have been given packets of shortbread made by mom as a practical, tangible expression of her love for you.

Needless to say, Mom had many friends.  Good friends who cared equally about her.  Whilst still teaching she joined a study group, then a book club, a group of people who knit clothing for sick babies.  She taught Sunday school.  She served at the Coffee shop.  Until a few years ago she walked with companions along the river, swapping the newspaper crossword puzzle answers, catching up on TV serials.  She was always surrounded by people.   You all meant a lot to her.  Thank you.

Mom taught us about how important it is to take time off.  Our family holidays at McLeary Cottage in Sedgefield will probably hold the strongest, happiest memories of messy family life.  We had idyllic childhood days on the beach, in and on the lagoon, eating wafer thin cheese and tomato sandwiches, walking over the hill and to Willempies café . Mom had a particular spot on the stoep and a particular Morris chair that I think of as her Happy Place and where I choose to remember her.  I can imagine her there right now, smiling and reading and listening to the birds and enjoying the peaceful moment.

Mom taught us about resilience.  She had struggled with health issues these past few years, but she showed a determination that was resolute and absolute.  She was determined to walk again, be mobile, cook, read, speak and live her life to the fullest possible.  She pushed herself and regained strength and mobility after very challenging circumstances.

And I think if she were here she would tell us she hasn’t finished teaching us.  There is still a lot to learn from her.  Patience, kindness, tolerance and love were her watch words.  We may have to be her hands and voice, we may have to listen harder to catch her enthusiasm, but the kindness she has spread has rippled out and will not end. 

So Mom still is a teacher.  Even in this heartbreakingly sad time - there is something she would want us to do for her.  She would want us to be happy.  We are going to try our best.

So I sit among my memories, surrounded by circles of cohesion and insufficient words, realizing that I don't have to imagine  a world without my mom, because people don't disappear or fade from being, unless you let them.

Mindfulness

TD's mid year exams are over!  As with any stressful period, the adrenalin was free flowing and the glucose numbers soared.  And if the exams were stressful, getting the results back  seemed to cause even greater anxiety.  I am inclined to take the long view about examinations - results are only useful in a context.  And that context is both the collective average of all participants and individual circumstances of each person.  TD was delighted with some results, and disappointed with others.  So, a good mix - some encouragement and some challenges. Considering that the symptoms of hyperglycemia are tiredness, poor concentration and blurred vision, and considering TD spent the entire exam period with elevated glucose levels, I think she did fine.  All the studying in the world is rendered less effective if you cannot concentrate. She worked hard, and I am proud of her.

There are a couple of weeks left before the end of term.  Classes have resumed as usual, with a few extras thrown in.  Today the grade 9s were spoken to by a survivor of the Holocaust and tomorrow the class will take the train into town to see the Holocaust museum.  It is a subject that has absorbed TD's attention and interest; so much so, that she forgot to inject her insulin for lunch.  She remembered to test, but - and she does not do this very often - she simply ate without injecting.  I am not sure if it was because her mind was waging war against the horrors of prejudice, or if she is so used to having diabetes that she just went with the flow of eating forgetting the crucial insulin, or if she has too much on the go.  It doesn't really matter - she just forgot.  Her number shot up so high that she had to sit out of sport after school.  And she is still running high.

Mindfulness - being present in the moment- is a necessary skill for anyone with diabetes.  There is a lot of self care that needs to happen.  TD needs to always be aware of what her body is telling her .  When she is low she has what she calls her "stomach feeling."  When she is low, she shakes.  Going high is more difficult for her to be mindful of, and so she has to practice the art of remembering.  She has to be extra mindful of what she eats and the effects of sport and extreme emotions.  Our pancreases do the job of balancing our sugars and insulin.  TD's pancreas no longer does that for her, and so she  needs her  thoughts and memory to compensate.  She is an excellent student of the Self.

Mindfulness is a necessary skill for all of us, and I think it is a life long project.  It is so easy to slip into yesterday's regrets or tomorrow's worries that often we miss the satisfaction of the present. (I love that the word is made up of two Latin words - "Satis" meaning "Enough" and "facere" meaning "to make.") And Enough is all anyone needs.

We are looking forward to the mid year school holidays - we anticipate huge adventures, a lot of laughter and many memory-making moments.  But more about that later....

In the meantime, I wish you all a Satisfactory Now!

Mindfulness on our favourite beach

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.

Maintenance

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

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

her independence safely.

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

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

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

April

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

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

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

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

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

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

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

TD's party

Young people often get a bad rap.  "Children now love luxury.  They have bad manners, contempt for authority; they show disrespect for elders and love to chatter in place of exercise."  So said Socrates around 400BCE, proving that it is a long held view.  I am always a bit bemused by these judgements of young people, as the youth's behaviour is surely the result of the environment and social skills created by the very same people who are criticising  them.  But there you have it - young people are often seen as self absorbed and under enthusiastic.  So it was with some trepidation that I heard the news that TD had close to 30 teenagers on her party invitation list.  About half I knew, as they had been friends for years - and they are all lovely, confident, caring teens.  About half are newer friends, and as always, it is the unknown that is slightly more daunting. Would the group react well together?  Would they cooperate?  Would they behave like the youth of Socrates' ancient world??

Parties are a big deal in our household.  TD chose Theatre Sports as the theme this year, and we decided to hold it on the last day of term, so that everyone could be in a holiday mood. Theatre tickets had been sent out, the stage was set, the front of house festooned in stage curtains.  Roll on 6pm.

As an initial activity, we had decided to let the party people make wooden frames (teens love wood, nails and hammers...) stretch material over the frames ( they are equally obsessed with staple guns and tacks...), find or create their favourite pithy saying and write it on their posters, and finally decorate the wall art with feathers, beads, fabrics, stickers, or any other creative materials.  They loved it - there was so much hammering and enthusiasm that, out of the blue, we were in the midst of a massive thunder storm. (Not that we can take credit for causing the storm, but the hammering and the thunder were wonderfully in sync.)  We rushed the tables inside and continued the activity.  This is the result:

As you can see the youth of today are obsessed with caring for each other, making people smile, and creating a better world. I love it that this world includes Unicorns and Harry Potter and Gucci and Fun.  The youth have a lot to teach us about the power of enthusiasm.

We played Theatre Sports after this - guessing strange personae, using everyday objects as unusual props, using words to create surprising and amusing scenarios.  There was much laughter, an abundance of happiness and a general good will and cooperation.

It was a good evening.  If you are ever feeling that the world is going to rot, invite a group of teenagers around, ask them what is important to them, get them to play collaborative games, and I am sure you will agree with me, that they are very capable of ushering in a bright, enthusiastic future.

Theatre Sports was an excellent theme for a fifteen year old's birthday party.  Teenagers are very good at inventing and reinventing themselves, until they find a self they are comfortable with.  As a modern sage, Maya Angelou, wrote: "We need to remember that we are created creative and can invent new scenarios as frequently as they are needed."

Good advice to remember when we feel stuck, or too grown up.

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!!

Ramblings after the storm

It is too hot for restful sleep some nights.  February is our hottest month, and with temperatures soaring up in the late 30s, the heat can be energy sapping.  There is a stillness in the air, and I long for rain. We Capetonians are in the midst of our worst drought ever recorded. We use no more than 50 litres of water a day each, and try to use less.  The fear of turning on a tap and finding no running water is real and constant.  So there are no long, cool showers, no cooling off under a garden sprinkler, no peaceful watering of gardens.  And there are definitely no baths.

TD and I both miss our baths.  For me, a bath is a bit of an occasion - my happy place where I allow my thoughts to wander while I soak out any tension in tired muscles.  Sometimes I read, other times I just enjoyed the liquid cocooning.  Either way, I come out of a bath rejuvenated and relaxed.

There have been all sorts of stresses in our environment lately  - not just the water crisis.  I grew up in a country that emphasized that the political is personal.  Everything that happens in government of a country affects each citizen.  There is no place to hide, no reason not to feel everything personally.

This past Tuesday there was a thunderstorm in Cape Town.  Bellowing, angry sounding thunder was followed by eye opening, sky illuminating lightning, and most wonderfully of all, rain.  It was the perfect setting for the political storm that was raging simultaneously.  We have been in a drought of good governance, and the country's resources and patience were as dry as our dams.  On Tuesday the President was blustering and angry, defiant with eye opening flashes of self pity and lack of insight.  We were waiting for him to resign, and then mercifully, like the rain breaking the drought, the next day he finally gave over power and the country could breathe again.  The future suddenly looks greener.  Renewal - of the land, the ground, the gardens and the government all seem possible.  There is hope.

Of course, the opposite is also true.  Not only is the political personal, but the personal is also political.  The way we conduct our lives is governed by the politics of where we live, the historical advantages or disadvantages, the current tolerance levels and availability and affordability of resources.

Diabetes (or HIV, or cancer or any other other challenge) is political too.  In 2006, the government issued a list of PMBs (Prescribed Minimum Benefits) which coerces medical aids to cover the costs of care and medication for the 250 listed medical conditions and 25 chronic illnesses.  So for families like us, who have a medical aid scheme that only covers hospitalization, it means that TD's diabetic care, her insulin and testing strips have to be paid for by the medical aid, regardless of the fact that we do not have full cover.  I am aware how fortunate we are to have that help, that we don't carry that burden that others do of how to afford treatment.

It had been a politically stressful week for our country.  The good part of most crises is that it brings people together. Collectively Capetonians are working to postpone Day Zero (when there is no more municipal water available) by using less and reusing every drop.  Collectively South Africans urged for change in leadership by having a political voice.  Imagine the power that could be unleashed if the world collectively used resources for medical research and kindness rather than consumerism and defence.

We are ever hopeful for a better future.  I am hoping for a wet wet winter.  I am longing for a deep soaking bath.  But if that is not to be, I could settle for world peace.

A photo that Andrew took of the gathering storm clouds on Tuesday.

Music camp notes

Sometimes words are inadequate, I think.  Some concepts, feelings, delights or horrors can’t always be articulated effectively with the boundaries of letters.  Sometimes we need to look deeper, and for me, that means listening to music.

Of the four of us, I am the only one who does not play an instrument.  I am writing this while waiting for TD at Beau Soleil Music Centre, where she is rehearsing with the strings ensemble.  They play beautifully.  She is also part of the school orchestra, one of three double basses in the 60 strong pupil group (aged between 13 and 18).  This past weekend, the school took all the orchestra, concert band and jazz band learners away on a music camp. (As I have already mentioned, it is a Very Good School.)

If you want parents of T1 teenagers to go weak at the knees and tremble slightly, just say the word “Camp.”  A lot of preparation, care and anxiety goes into sending someone with T1 on a camp.  Apart from the usual clothes, tuck, soap and toothpaste, I packed a loaf of whole wheat bread, sugar free jam, nutella, bottles of water, pronutro –a breakfast cereal- and Ensure (a meal replacement drink).  I also included extra iceblocks, extra insulin, needles, the food diary and a slab of chocolate for slow release evening carbs.  All of this had to fit into the tiniest of cooler bags so that TD didn’t feel too conspicuous, and her luggage blended in with the rest of the group.  (The fact that that her instrument is by far the largest in the orchestra did not escape my ironic sense of humour.)

Before any school camp, I make an appointment to speak to the teachers concerned.  I take along my “Camp Pack.”  It consists of a typed handout I give the teachers, my notes to make sure I verbally cover all the things I feel I want to tell them, an emergency kit and an orange.  I let them know what to look out for in highs and lows, where the potential dangers lie, and what to do if things don’t go according to plan.  I explain the insulin routines – the long acting insulin is injected at 6am and 9.30 pm, and how  the short acting insulin dosage  is calculated at mealtimes.  And then I give them the orange and show them the emergency GlucaGen Hypokit which is given to a person with T1 if they have gone so low  that they are unresponsive and unable to ingest glucose by mouth.  It is a life saving procedure, so I feel it is only fair to give the teachers a practice round.  Mixing the solution and injecting it is not as easy as it sounds, so a trial run is a good idea.

So TD went off to camp on Friday afternoon amid much excitement and a little trepidation.  Of course I worry when she is away: not so much in the day time, because TD is very capable of managing her diabetes and knows (usually) when she is going low.  It is the nights that make me fearful.  When she is asleep, she cannot “read” her body in the same way.  She won’t be aware that she is going low.  And she won’t know how low she is.  This is what I worry about.

All the parents are invited to a concert at the camp on Sunday afternoon, so that we can listen to the groups perform (and take our children home…)  It was a hot, hot day.  Roadworks meant we arrived only 15 minutes before the concert was due to start.  As we took our seats, TD came to say hello.  She had had a good camp.  She was unbelievably pale.  And her glucose reading was 2.2. This is breathtakingly low, and she says it had dropped very quickly.  Two sachets of glucose later, and still looking wispily pale, she and her fellow musicians put on an excellent concert.

This was her second low on the camp :  she had had another scary dip to 3 the day before.

TD made a lot of friends at Music camp.  She spent much of the free time in the pool.  She played card games.  They stayed up too late.  She wasn’t too sure about all the camp food : all the usual teenage camp antics.  It is an enormous responsibility the teachers take on, and I am thankful to the school for adding to TD’s memory bank of happy times.

Music is such a powerful form of communication.  When I listen to the school orchestra, and think about the power of co-operation and collaboration and leadership to bring about beauty and harmony  I find I don’t need any more words for a while.

So – here is a soundbite of the school orchestra for your listening pleasure:

Love Letter : a card game

So, this is how we roll:  TD was sick.  She had a bad dose of gastric flu, and couldn't keep any food in or down.  She had a high temperature, was listless and unable to eat.  I took her to the GP who has extensive and personal experience of T1 diabetes.  I trust him.  (A lot of other people do too - the waiting room was packed and we had a couple of hours to chill before he could see us.)  TD's ketones* were over 2  -that is too high, so he wanted to put her on a drip straight away.



The surgery nurse hooked her up in one of the treatment rooms, and I phoned home to say we would be another hour or two.  TD was stressing for two reasons: One – she does not like drips.  She has bad memories from the time she had a drip needle in her hand for a week at diagnosis.  And Two – it was the last day of her brother’s holiday in Cape Town before he had to fly back to the UK.  She didn’t want to miss out on those last few hours with him.

A few minutes after my phone call, my husband and son arrived at the doctors’ rooms.  TD’s brother had brought with him an-easy-to-play-even-with-one-hand card game, and so the four of us enjoyed some quality family time while the drugs and saline dripped into TD’s system.  Because this is how we roll.

The next day, TD had not responded sufficiently to the meds, so after dropping our son at the airport, and having spoken to Dr T, we took TD to be admitted to hospital.

Another drip in the emergency room :  this one took two nurses, one doctor and more than four attempts to put in.  TD’s veins are almost invisible, and even when found,  they are not receptive to big IV needles.  TD was distraught.  I held her head, shielding her eyes from the puncture bruises and tried to calm her a bit.  She dislikes hospitals even more than she dislikes drips.  And this time she had no brother to cheer her up.

The nurse on duty had a larger than life attitude and was Fabulous! The doctor on duty just seemed flummoxed. The whole diabetes thing seemed to throw her a bit.  She ran some blood tests, put up the drip, but was ready to send TD home when the blood results came back, without wanting to give the drip time to do its thing.  TD had high ketones -4 on admission.  We told the doctor we would wait for the drip to finish.  I massaged TD’s feet, Andrew played a logic game on his phone with her, the Fabulous Nurse checked in on us every now and then.

At last, a couple of hours later, the drip had dripped its last drop.  The Nurse retested TD ; Ketones 2, Glucose 22.  Now the doctor thought there might be a problem.  She suggested giving TD 10 units of fast acting insulin.  Andrew and I looked at each other.  We suggested treating her at home.  10 units was a worryingly large amount of insulin, and we were worried she would go too low.  TD was discharged, and we took her home.

Instinct can be a useful tool, and in this case, we were right.  By 2am, TD’s glucose number was down to 5, with no extra insulin given.  We had been right to monitor her at home.  The gastro cleared up with the prescribed antibiotic.  It had been a wobbly week,  and one that allowed a lot of introspection for me about what is important in life. Somebody stealing the house numbers off our front gate, a disappointing trip to a hairdresser, travel plans getting complicated - all background in that same week- all became trivia and annoyances rather than anything to worry about. The important stuff was all ok – TD got better, we had had a lovely family holiday time together, and when things get a bit rough the four of us form a gridlock of security for each other. I imagine that we were quite a sight, crammed in a small room, TD lying on the bed with a drip, the rest of us trying to squeeze into the space without getting in the way too much, playing a card game (It is called Love Letter if you want to get a pack!), guessing  as to who held which cards.  There were a few amused glances thrown at us. I don't mind what others think - because when a 14 year old is dealt the diabetes card, she needs to be surrounded by love and humour.  And that is how we roll.

A note on ketones:  If a person's body does not have enough insulin, and so glucose cannot be converted into energy, the body looks for alternative energy sources and starts to break down body fat and muscle.  Ketones are the acid by-product of this process, and their presence can quickly lead to DKA (Diabetic ketoacidosis) - a life threatening situation.