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!

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.

Tech and the teenager

TD's (Teenage Daughter if you haven't been introduced yet) wonderful endocrinologist wanted more detailed analysis of TD's glucose levels and fitted a CGM (Continuous Glucose Monitor) on her for ten days.  TD has strong opinions about many things including, but not limited to, politics, music, sexism, gender labels, religion and CGMs.  She strongly disliked wearing the device and tried to explain why to me.  I think I got the gist of it.  She says it feels as though it makes her less human, more machine.  It has something to do with technology ruling her life.  (This from a teenager with a hearty interest in Pintrest, Whatsapp and YouTube on a tablet and smartphone....)  But she agreed to wear the device.  Strangely, far from reassuring me that her glucose levels were being constantly monitored, I felt more anxious: FOMO in the World of Diabetes.  Perhaps I felt the need to constantly check the device because it was a new and novel tech for us.  It makes so much sense to have a CGM, and probably, an insulin pump.  For some people, this is the best way of dealing with diabetes. Some people prefer manual injections and testing.  It takes economic privilege to try all the new technology available - none of it comes cheap, and medical aids seem more than a bit reluctant to cough up.  (Unless your experience is different - I would love to hear about it...)

I think TD might come round to the new neater, easier to use CGM that the endo has suggested.  I am hoping so, to give her fingertips a chance to recover from the ten or so tests she currently does daily.  TD has set some rules - she wants to have control of the reader, so that she can see what her body is doing before others know.  It is the same rule we apply to manual testing, and makes complete sense to me.  TD needs to be in control of her own health, and this small rule puts boundaries in place :  It is her body and her glucose number.  Respect, TD.

A learning curve

TD's (Teenage Daughter's) school experiences have been interesting.  My newly diagnosed daughter, in grade 6 at the time, ran across the playground at home time, with her arms outstretched gliding like an aeroplane and whooping, "Mom, I am high, I'm high."  There were several skew glances in our direction, and after we had shared the news that it was her glucose levels that were high, and she had drunk a glass or two of water, we left the playground, ignoring the raised eyebrows.  People do stop and stare.  TD refuses to hide her diabetes and happily tests and injects (into her stomach) in public.  A cute little girl in a beginner grade at the school saw her doing this and bravely asked the big grade 6 what she was doing, and TD patiently and using age appropriate language, explained about her pancreas, her lunch bag and her needles.  TD keeps her testing kit, insulin pens, glucose sweets, emergency contact card and info sheet in a cooler bag.  It gets hot here in sunny South Africa, and insulin needs to be kept below 23 degrees C.  This bag is her constant companion, and her (and my) Linus blanket.

TD's grade 6 and 7 class teachers were incredibly kind, compassionate and sensitive.  Both managed to both keep an eye on TD and give her the space she needed to be independent and self confident in her diabetes management.  I spoke to the staff about diabetes generally and TD specifically, and felt a great deal of comfort knowing she was in a safe environment.  It is  not easy letting go of a newly diagnosed diabetic and trusting the universe in her safe keeping. Happily the instances where I was needed at school were few.  Exam times, and the stress associated with them, brought on roller-coasting glucose levels.  Once I was called to the pool for an unspecified problem.  (It took me about three hours to calm my heart rate after that phone call - and the problem was not big.  I have learnt to ask for specific details when phoned, and not just to react and jump in the car - a learning curve for me.)

The Phys Ed teacher also looked after TD with great care, making sure her glucose levels were in the right bands for exercise both before and after sport. I do not take these things for granted.  I am so grateful to the good people who have helped TD gain her confidence, manage her everyday issues and get on with life.  I think she reciprocated their attitude by teaching them about resilience, bravery and determination.

The High Life and low life

I wish I had a better understanding of the Highs and lows, the whys and wherefores of a teenager withT1 diabetes. Hypoglycemia (too little glucose) and hyperglycemia (too much glucose) are everyday buddies of my Teenage Daughter (TD for short). Some patterns I can see, but others seem so random! One test she is floating in the glucose teens and the next she has sunk to the scary threes.  I get frustrated with my own lack of ability to predict what's next, my own inadequacy in helping and bewilderment at the power of the body.  I have always been a believer in the mind/body synergy - the importance of linking heart with health (in a practical way) and now, seeing glucose swing with fear, sadness, happiness, anger, there is concrete confirmation of this.The adrenal system is activated with extreme emotion and this obviously has physical effects. Now I can just see it in numbers on a monitor.  In a detached way, it is all very interesting, but in an honest moment here - it makes me raw with fear and sadness.  Unlike TD, my pancreas deals with all these emotions and my body copes to a degree.

I am lucky - TD is usually quite open emotionally.  She will say, " I am sad today, and I don't know why." or "I am feeling strange right now."  Like most every other mother in the world, I want to take it away and make it all better.  And I know I can't.  So I enfold her in my arms, and hold her and let her know I am there.  It seems horribly inadequate, but it is the best I can do.

Start at the beginning

Most days I say a silent thank you to Dr M - a man I have never met, and only spoken to once on the phone.  He phoned me at about 1am on Saturday the 20th December 2014.  As the doctor in charge of the pathology tests at the lab a GP had sent Teenage Daughter (TD hence forward!) blood tests at 4pm, he saw them and knew she was in critical danger. TD had been unwell for a while - tired all the time, losing weight and lacking her spark, we had limped to the end of the academic year, and thought a holiday would do the trick.  We had been to the GP a few weeks before with the same symptoms, and he had prescribed an antibiotic.  But she wasn't getting any better, and on a Friday morning at the local grocery shop, she ran out of energy.  She used what little she had left to protest against me taking her back to the doctor (Christmas time was very important to my eleven year old.)  But I picked her up and dragged her there.  He sat her down and did the usual checks.  He then sent her off to provide a urine sample, leaned forward and confidently diagnosed anorexia nervosa.  No.  I knew that was way off and told him so.  I also thought it was a somewhat rash diagnosis.  When TD got back the glucose test strip went violently green, indicating high levels of sugar.  So the GP took some blood and sent us home.  TD and I crawled into my bed (Dad and brother were away for two weeks) and knowing there was something terribly wrong, we drifted in and out of restless dozing.

Until Dr M phoned to say TD's results were critical and could not wait until morning.  He had phoned the local hospital, spoken to the emergency staff, told me a name of a doctor who was waiting for us right then.  He had thought of everything - I bundled TD into the car and went to the waiting emergency room.  He saved TD's life.  I will be eternally grateful.

(Not so much to the GP who sent us home.)

How did you discover your child had diabetes?  Are there people you think of daily in gratitude?  Were you as terrified as me?

If you are anything like me, you will be reading this with a mug of hot tea in hand.  But welcome to the coffee drinkers too.  Tea has accompanied me through many of life's occasions - the hiccoughs, the hellos (and goodbyes) and the hell-weeks.  An aside: I once confessed to a doctor that I drank 6 cups of tea a day, and he told me to give up or reduce immediately.  This was a turning point for me - I realized I had to find a new doctor....  What I have done in the interests of health, however, is to cut down on sugar.  From 3 spoons a cup (gasp, I know, but I was a skinny youth with no insight into tooth decay and sugar highs and lows...) to now having none. At a tearful airport goodbye, my sister-in-law,J, challenged us both to cut out sugar, and we clinked airport mugs and agreed to do this together. But, as we live on different continents, I sneaked a spoonful in every now and then.  I did let her know.  I am, generally, the honest sort. (OK - I do sometimes have more than 6 cups a day.)

But I gave it up completely two and a half years ago, when my daughter, then aged 11, was diagnosed with Type 1 Diabetes (T1).  So that is what this blog is really about: being a mom to a beautiful, talented, sensitive teenager who lives with needles and glucose test and a backdrop of angst about hypos and hypers*

Having sugar in tea has nothing to do with diabetes type 1.  Nor does eating sweets, drinking fizzy drinks, a sweet dessert tooth or any other life style factor.  It is an auto-immune disease; the body attacks it's own pancreas and insulin production is halted.  This means that the body is unable to unlock the cell walls to allow glucose (energy) to reach the cells.  So there is a build up of sugar in the blood stream, and a lack of energy in the cells.

There is an important distinction between type 1 and type 2 diabetes, and not too many people get that, unless you have stumbled across these diseases in a personal way.  Type 1 people are insulin dependent, the onset is sudden and life threatening.  Type 2 has a slower progression and can usually be controlled with diet, healthy lifestyle and if necessary, some insulin.

But you probably know that.  In fact I am hoping to find people who know all sorts of things about diabetes and mothering and compassion and well....anyone really, who has time to join me on this journey.  So - if you have Time for T, let me know and we can chat.


*more on hypers and hypos another time...