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. 

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."

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

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.

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.

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.

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.

 

A moment of clarity

Happy New Year!  I am not one really for making new year resolutions. Are you?  My logic goes something like:  if you want to do something or change something, it is best to start straight away - there is nothing magical about the days rolling over to a particular number.  But I do have some odd notions about "laying ghosts to rest."

So, today, I am sitting at a table at a restaurant in the Company Gardens where, just over three years ago, TD, my excellent friend K, and I sat having a Christmas outing and catch up chat.  Some memories of that day are sharp, others a bit fuzzy.  I remember the three of us going to the National Art Gallery and being surrounded by great beauty and/or thought provoking works.  I remember warm sunshine as we walked through the summer gardens to the outside restaurant, and sat at a table in the shade of lovely old trees.  I remember ordering a chocolate brownie for TD as she hadn't been hungry at lunch time.  Everything should have been lovely, but TD looked at the food (normally her favourite), tried the tiniest nibble and tears welled up in her eyes.  She couldn't eat it. She was painfully thin.  I have to admit I felt a bit frustrated.  I didn't know until the next day that she was DKA.  I knew nothing about T1.  All I knew was that I was worried about her.

Sometimes places hold memories that are full of fear.  This restaurant is one of those places, and I have avoided it.  So, I am sitting here, alone, having tea, hoping to forgive myself for my blindness and ignorance and dangerously slow reactions three years ago.

This morning, TD and six friends and I went to visit the same art gallery.  The exhibits have, of course, changed.  The girls wandered round, splitting up into kindred groups.  I don't think TD could hear the thumping of my heart.  It was good to revisit the gallery and paint a different picture for myself.  TD and her friends are now wandering around the national museum, while I excused myself to sit here and drink tea.  It has been good to revisit not only the places but also the memories and depths of the self, and to look at them from the distance of time and expand them with laughter, happiness and maybe even forgiveness.

Resolutions come for me in moments, rather than years.  I have moments of clarity where I can see the bigger picture.  One of TD's friends brought home made chocolate brownies for them to share this morning.  She ate (more than one) happily, seemingly oblivious to my deja vu moment of three years ago*.  I resolved then to let go of the shadow of the tea room and gallery.  Or rather to let go of the fear of what happened three years ago.  TD, surrounded by friends and chocolate brownies, helped me replace the fuzzy memories with new experiences.

All the best for 2018.  May your have many moments of resolutions that bring you happiness.

* TD read the blog and showed me yet again, that she is way ahead of me in her kindness.  She deliberately set up today to remake the memory for us both.  Thank you TD.

 

Warriors and Worriers

It is exam time in TD-land.  These exams are the final hurdles in her first year of high school.  It has been a whirlwind of new experiences, new friendships, new subjects.  And a few challenges along the way.

Exam times are pretty gloomy in most households.  There is a heaviness of responsibility, a curbing of free time and even a little social distance as all her classmates creep into their study corners and either study or wait for the three weeks to go by.  Feelings get frayed, tensions escalate.  Glucose levels soar.  If you need confirmation of the stress exams cause to teenagers, have a look at a person with diabetes exam glucose readings. Most exam times, TD gets sick.  This week was no different.  She has been running a temperature, is sleeping badly, and feeling excessively tired.  High glucose numbers can do that to a person.

Hyperglycaemia (too much sugar in the blood) shows itself in blurry eyesight, difficulty in concentrating, tiredness, apathy and irritable behaviour. All of this adds up to stressful exam periods, and of course, the stress causes the glucose levels to rise and so the loop closes.  Tight glucose control is even more important in stressful times so that things don't spiral out of control.

So, in the study breaks, we watch mindless TV shows, go for walks, and TD reads thick books.  She is currently reading the  Magnus Chase series by Rick Riordan.  It uses Norse mythology as a backdrop for page turning adventures of the heroines and warriors.  When we were chatting yesterday, TD used Warrior as her Word Of The Day.  But I misheard - at first I thought she had said "Worrier."

And all of a sudden I had a moment of clarity:  TD is the Warrior, fighting and winning the diabetes battle, and I am the Worrier, the person who is concerned about things going pear shaped.  And that is how it should be - my job is to keep a safe environment for TD to live her life, and her job is to be the heroine in her own story.

Hyperglycaemia is often more difficult to detect than hypoglycaemia.  There is no shaking or paleness.  And the symptoms of hyper all too often look the same as the symptoms of being a teenager. (!)  Water helps to wash the glucose out of the system, and if needed, TD injects some insulin.  It is a constant balancing act to make sure the numbers are neither too high nor too low.

 

I hope whatever examinations or tests or stresses you are facing at the moment are manageable.  I hope your life's balancing act is holding steady. When things get a bit unbalanced around here, I remind myself to keep looking forward, chin up and to always have a safety net! Worriers are warriors too!

Party tricks and food

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

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

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

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

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

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

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

Lowdown on reading

Books play a large part in my family's life.  We have distinctive, but overlapping tastes in literature.  I, for example, don't much like science fiction and fantasy (with a few exceptions).  Our son loves both these genres.  I favour modern fiction, and lately, biographies and recent history.  Andrew likes non fiction, a good crime novel and science fiction.  TD reads most things, voraciously and repeatedly!  Each time she rereads a favourite book, she cries at the sad bits, flaps her hands in excitement (I am told it is called "fangirling") at the soppy bits, and leaves the scary parts to read in daylight hours.  Often she walks beside the character right until the last sentence.

None of us can imagine a bookless environment.

Everyone, I think, goes through times in their lives when reading is more difficult.  It usually has to do with our focus not being able to enjoy fictional worlds, because reality is too imposing or serious.  Sometimes my eyes become mirrors and the images of the words bounce off my eyeballs without being comprehended.  I might as well be reading a foreign script.

This is, I imagine, how it feels to try to read when your blood sugars are low.  Your brain hasn't the energy to interpret the squiggles into words, and words into meaning.  Lows are serious stuff .  Hypoglycaemia (the medical term for glucose lows) has a long list of symptoms, including tearfulness, poor concentration, tiredness, confusion and dizziness.  Everyone is different:  TD's lows often make her giggly and always make her shake badly and go very pale.  Research has shown that, although the glucose number should get back to the normal range within 15 minutes if the low is treated properly, the effects of a low last about 60 to 90 minutes.

TD copes well with lows.  Best case scenario is when she can feel herself dipping and can prevent the low from taking hold.  But this isn't always possible, especially at school.  TD is an excellent student - she is intelligent, conscientious and attentive.  (Also, all her reading means she has an excellent general knowledge and robust vocabulary for debating all those issues she is so passionate about...).  Sometimes I wonder if her educators are aware of the effects of her blood sugars on her day.  A test, for example, written shortly after the low is not going to go as well as one would if her blood glucose was in the normal range.  She would never suggest diminished capacity as an excuse for a less than top grade. But I can imagine that when, at school  the world starts floating past you, words slip off a page and meanings become vague, it would be a good time to show some self compassion.  I admire her so much for taking this all in her stride.

Reading allows me to experience the world in larger dimensions.  It offers me the chance to learn, to relax, to marvel and to explore. Good books are like guides through life's journey.  Uninspiring books are useful too - none of our furniture wobbles.

Road Trip

There has been a lot going on these past few months : TD was sick, her brother left home to study at Cambridge University, her Gran and Grandad have been unwell and the technology project for the term was to build and race a go kart. (And TD was the only member of the group with a working knowledge of hammers, screwdrivers and washers.)  We were all tired, and needed a change of scenery.

So, during the one week school break, the three of us went road tripping.  Andrew hauled out the big map, looked at which roads we had not yet coloured over in red pen (to signify we had already travelled on them) and plotted a route, exploring a few villages and towns close to Cape Town.
Packing was easy: Jeans, t-shirts, swimming costumes, walking shoes and some warm tops, cellphone chargers and an abundance of books.

And ice blocks, cooler bags, extra insulin, emergency glucogen kit, wholewheat bread and cheese for meal emergencies, extra testing strips, one ketone testing strip (well, you never know...) , quick acting glucose sachets, super c sweets, extra needles....  You know - all the usual stuff everyone takes on holiday.  At least everyone who is travelling with T1.

Diabetes takes no holidays.  It is not something we can relax about for a week (or a day) or just decide to take a break from.  It is a relentless disease, unforgiving of forgetfulness, dangerous to tune out.  Holidays or ordinary days, every morning we test TD at 6am, we wake at 2am if needed to check her sugars, we don't skip meals.  None of this bothers us in the slightest.  I suppose we no longer see diabetes as a disease, rather as a new way of life.

The road trip was lovely.  We stood on the beach at the southern most tip of Africa, we spent a whole day at the natural hot springs soaking up sun and catching up some reading.  We ate delicious foods.  We listened to all the latest trendy music (Thanks TD for the compilation!).  We recharged our batteries, missed our son, basked in the wonderfulness of our surroundings and made memories that will last forever.

 

Introductions and Normality

Just to be clear:  TD stands for Teenage Daughter, NOT Teenager Diabetic.  I know this blog is about the joys and challenges of parenting a person with T1 diabetes, but it occurred to me that this gives such a small picture of our lives.  TD is so much more than a diabetic teenager.  Diabetes does not define her.  It limits her.  It hurts her.  But it is only a small part of who she is. And so, with her permission, I thought I would introduce you a little better.

Some things you will already know from previous posts - like how strong headed and certain of the way she wants things (OK - stubborn)  she can be at times.  You will also know she inspires others with her bravery, tenacity and resilience.

She is a quirky, creative being.  She finds happiness in drawing, in playing music ( she plays the piano and the double bass - nothing small about TD's ambitions or instruments!) and in writing.  She is passionate - about human rights, about gender issues, about freedoms.  She is funny, with an off beat sense of humour, and an excellent sense of comic timing.  She reads.  She loves cat images on  the internet.  She plays Settlers of Catan with the family using cunning strategy.  She likes history, and is good at maths. Most of all, she is a good friend - loyal and kind.

I started thinking about all this after reading a thread on the Tudiabetes website.  The thread was called "Can T1s have a truly normal life"  The two sides of the argument seemed to be :  Yes, diabetics are just the same as other people, and No, diabetes affects every part of daily living and you are doing a disservice to children telling them they are normal, as they aren't the same as everyone else.

I have strong feelings about this subject. There is no such thing as "normal."  Everyone has restrictions in their life.  Maybe someone is too tall to be a ballerina, or has a visual impairment so cannot be a pilot.  Some people are restricted by economics, some by low self esteem.  "Normal" is a veneer people put on top of character in order to blend in and feel acceptable.  It is, in my opinion, a mythical, unattainable and reductive goal.

 

Yes, TD now has restrictions.  She cannot eat carbs without injecting insulin, she cannot be a pilot, she needs to test her sugars many times a day,  and she probably will be too tall to be a professional ballerina.  Everyone adapts:  she will too. 

She can't make up her mind.  Maybe she will be an architect.  Or study political science.  Or write a book.  She is fourteen - lots of time for her to decide how she will use her talents in this world.

Until then, she will, like a lot of teenagers, keep tabs on all the cat memes on the internet.  Like all other teenagers, she will challenge her parents, and debate almost every decision.

And like most other teenagers, her room is a mess.

Acutonics and herbal tonics

About six months after TD's diagnosis, my husband and I made an appointment with a doc who had first trained in Western medicine, studied further in Chinese medicine, and now chooses to practice the latter.  We wanted to find support for TD, and I, in particular, wanted to explore any helpful avenues.  He spoke to us for over an hour, explaining the Eastern model of health to us; how the body reacts to its environment, how we can influence which parts of genes we can activate, the role of both conscious and unconscious stress on the adrenal and hormonal systems.

He doesn't use the word "disease" for diabetes - rather he sees it as an imbalance.  He taught us about the Autonomic Nervous System that controls the flight/fight responses, and how relaxation is needed for even every day functions such as digestion, and the Peripheral Nervous System which deals with such things as heartbeat, pancreas functioning, learnt behaviours...

(I really hope I got this right.  PLEASE please comment, suggest or correct me if I have misremembered or misunderstood.)

TD has - unfortunately for a diabetic - a strong dislike of needles. So, although Dr P thought acupuncture would be a supportive form of treatment for her, he suggested acutonics.

Acutonics uses tuning forks with different frequencies to create harmony (or disharmony.) These forks are banged on a piece of metal and then placed on the acupuncture points on the body.  Dr P also put TD on some herbal supplements, as Chinese medicine believes that taste addresses different needs in the body (think of wanting curries and soup in winter, salads in summer etc...)

We told TD's endocrinologist all about this.  She is the person we trust with TD's diabetes management.  She is supportive of complementary medicine as long as it does not interfere with treatment of diabetes.  Both doctors agreed that it could do no harm.

So we made frequent, then less frequent trips to town.TD would chat to Dr P for a while, and then go into the cool, quiet, tranquil treatment room for acutonics.  The combination of the soothing environment, Dr P's gentle manner and listening ear, made the whole process one of deep relaxation and a feeling of wholesomeness.

We tried this, and the herbs, for a few months.  As TD got more used to the treatment, its calming effects seemed to lessen.  Dr P wanted to move on to needles and full acupuncture, and tried a few.  But TD was having none of that, so we stopped going.

This was a costly business, but I do not regret it at all.  At the time, we needed to be able to relax a bit, and this was part of the journey.  Finding a relaxing space to chill out for an hour twice a week, weekly or fortnightly, was good for TD at that time.

Have you tried anything similar?  Please comment if you would like to - I would love to hear a ping from the universe!

Word power

My last post disappeared.  I think I pressed the wrong button and saved a blank screen.  That feels a bit like my life at the moment.  My efforts often get lost through my ignorance or lack of understanding of how things work.  I had been writing about writing - why I felt the need to start a blog.  My aims had been to unclog my thoughts and connect with other people.  I haven't managed to achieve either of these two things yet.  Some of the lack of unclogging has been my reticence to be messy - I am more than a little wary of spilling too much angst in public.  So I have deleted draft posts about my silent tears when TD's glucose was 2.6 and the shiver of terror I felt, and I deleted the post about the month of 2am glucose tests that were very necessary to keep her safe.  Facing diabetes as a parent is scary and exhausting and ever present.  It changes family dynamics, redefines life goals, stretches the limits of trust and generally makes one more aware of the simplest things - like how foods, sleep, exercise, emotions all weave a complex web in our lives.

I find it frustrating when well meaning people offer glib and simplistic advice on a subject they know nothing or little about.  I know they all mean well.  I try to smile through it and take the good (that they are interested and concerned.)  I even try to tell them a little bit about what it is like to parent a T1 child.  Sometimes though the comments that say " Oh well, type 1 , type 2 same thing"  or "she'll outgrow it" or " does she still have to test and inject?" or "but she is so skinny" make me feel more isolated.  I am getting better at laughing off ignorance - there is so much I don't know, I can hardly be critical of others.  It has made me more sensitive in my own language use though - I try not to presume other people's feelings and ask rather than express an opinion.  So that's good!

So my "blank screen" is slowly filling up with text.  Hopefully I will not delete too many of my posts and will be able to create a conversation. Thank you for absorbing some of my angst.

The Power of Friends

Something magical happened when TD was first diagnosed.  Her school friends enfolded her and encircled her in protection and love.  It has been a privilege to watch this process.  Sometimes the encircling has been quite literal - if she needed privacy for testing or injecting, or if she needed support whilst having a low, they would form a protective group around her.  Sometimes the barrier was an emotional one of kindness between her and the harsh realities of diabetes.  Each individual brought something unique and powerful to the friendship - quirkiness (highly valued here!), love, humour, hugs, straight-talking, listening hearts, and a sense of normality.  Friendship can be powerful.

They are a funny group too.  Once, when TD was being questioned yet again why she carries a cooler bag around all the time (it's for her insulin), these 11 year old girls answered on TD's behalf that it was her make up bag, because she needed to touch up her look during the day.  This in a rather strict school environment where dress is uniform and make-up, obviously, forbidden.  Their humour is catching.  Now when we play "Who has the saddest story to earn the last brownie"  (like in the movie Notting Hill) TD usually wins with, "I am diabetic and single."  Well, yes, that is hard to beat, so with an insulin injection of 2 units, she gets the last brownie.

There is nothing funny about T1 diabetes.  Humour is a coping strategy which works well to sometimes lighten the prospect of a lifelong disease.  It can be a lonely business being diabetic.  I am so glad TD has so many good people in her life.