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?