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.

 

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.

 

Gifts and gratitude

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

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

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

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

Wishing you all a very happy Christmas.

Magical Science

The Science fiction author, Arthur C Clarke famously wrote :"Any sufficiently advanced technology is indistinguishable from magic." I think I know what he meant.  There is a specific blood test that - magically/ scientifically - can give a measure of the average blood glucose level during the last three months. The science part is that it measures how much glucose binds to the red blood cells, and red blood cells circulate around your body for about three months.  The magic part is that you can prick your finger, take a blood sample and three minutes later a magic box prints the information for you on a sticker.  This is called the HbA1c test.

TD visits her endocrinologist about every three months and this is one of the tests and checks that keep her safe.  People like me who are lucky enough to have a functioning pancreas, should have a three month average of  of blood glucose of between 4.5 -6.5 mmol/l. And that is a yardstick for diabetic control too.  But it is not that simple.  TD's last HbA1c result was 6.6.  This is good - it means that high sugars are not doing long term damage to kidneys, eyes and nerves.  But the endocrinologist was a bit nervous, as some of TD's daily readings had been quite high (exams, feeling ill, teenage hormones - the usual culprits of high sugars!!), so where were the lows to give such a satisfactory average?  Because TD is not wearing a CGM, we only have the information from her finger prick tests to work from - all the times inbetween are a blank page.  Undetected lows are a problem.  They are scary.  Could TD be going low in the middle of the night, and if so - how low is she going?  We need to know.

The options were either to wear a CGM for a few weeks, or for us parents to do the 2am tests for a while.  TD chose the latter.  So far, so good - no middle of the night lows (a 5.6 last night which meant she could have nighttime chocolate to see her through to morning...).  But this method of testing does not give the full picture.  For that, TD will have to let go of her fear and dislike of technology and wear a monitor for a while.  

Science and magic is not such a strange combination.  I think one sparks the other, creating an environment where imagination triumphs.  We need both in our lives - solid facts to ground us and tell us our boundaries, and a little magic to enable us to dream of different futures and keep us company on the 2am shifts.  



PS: Arthur C Clarke also said  "The only way to discover the limits of the possible is to go beyond them into the impossible".  Doesn't that sound like a T1 journey?

Siblings and thankfulness

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

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

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

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

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

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.

 

Slender threads

Until last Thursday, TD had long, long hair.  She cut it short after much anticipation (and some angst) and gave the pony tail to CANSA - the Cancer Association of South Africa.  They make wigs for people who lose their hair during chemo treatment.  She has wanted to do this for a couple of years now as a thoughtful, personal response to people living through cancer.  Most people  have been touched by cancer in some way - through a family member, friend or colleague.  Awareness about cancer and its treatment is growing, in part because the media have demythologised it, but mostly because people are less afraid to talk about it and more open hear what treatment is available.

Other equally potentially deadly diseases do not receive such attention.  Why do some illnesses still have stigmas attached to them, sometimes even blame.  Why are people quick to judge others who are ill, why do we even have a label called "Lifestyle diseases"?  Much publicity around diabetes  seems to have an admonishment with it.  A radio advert running on our airwaves at the moment says something like: "Do you have a glass of orange juice for breakfast, and energy drink on the way to the office, cola with your lunch?  Do you know you are setting yourself up for diabetes type 2?"  The advert is from the government justifying the proposed sugar tax.   People look at TD and assume unhealthy eating habits caused her pancreas to stop functioning.

Another illness that people don't want to talk about is depression.  Despite alarming statistics - about 7 out of 100 people suffer from depression at some time in their lives - it is whispered about with eyes averted as if it is something to be ashamed about.  I was thinking about this because depression, like cancer and diabetes, can be life threatening if not treated.  A week ago, a class mate of TD took her own life.  She was only 14.

We need to talk.  We need to destigmatise ALL illness.  We need to be more compassionate, less judgemental. We need to be kinder  - to others and ourselves.

Life can be a slender thread.  We can be hanging on,  hoping the thread holds, hoping others see that it is fraying.  Let's use our slender threads collectively to create a interwoven rope of support.

I hope whoever gets the wig made from TD's hair magically absorbs the love and support which comes with it. Every time I look at TD, I see strength and compassion and great beauty in her short hair.  And I want to hold her tightly and keep her safe.

Dear parents of T1s

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

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

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

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

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

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

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!