Diabetes Blog Week- Day 1

Diabetes and The Unexpected – Monday 5/15

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

I’m going to tackle the latter part of today’s challenge! 

Context: My son was diagnosed with Type 1 diabetes three and a half years ago.

GOOD THINGS DIABETES HAS BROUGHT TO OUR LIVES

AN ABILITY TO DO MATHS– I really do suck at maths and my poor wee brain turns itself inside out doing calculations for new recipes. I find now that I can add carbs up in my head and divide them by the number of people eating the food with greater speed and accuracy. It does take my total concentration. If my husband comes across me in the kitchen with a furrowed brow and strange facial expression, he knows to leave me alone. I’m either counting carbs or doing my pelvic floor exercises! If I can ever master doing both things at the same time, I will let you know! 

A KICK ASS ATTITUDE – I used to worry about what people thought of me. Now? Not so much. I have taken a school principal and his deputy to task when my child was unsafe under their care. I know how to cut to the chase with an issue and I am afraid of no one when it comes to my children being safe. 

ACTING SKILLS – there are days when I am exhausted either from worrying about all the things mums stress over or have concerns about the added whammy of having a child with Type 1 diabetes thrown in. I work full time as a teacher and I do totally love my job but there are days when I’m exhausted and would rather stay home and binge on Netflix. I can’t so I slap on my makeup, and go to work. 

I know that my son has his own version of this. After a rocky night, he still gets up and goes to school and does his work. He must feel pretty crappy at times but he never lets it show. Sometimes we have a quiet hug before he goes out as I need him to know that I get it on some level. I may not have diabetes but I am his mum.

MULTITASKING I’ve become really good at faking total engagement in meetings and in class whilst being able to imagine where my child is, and what his blood glucose levels might be. You know what? I must be bloody good as no one has ever noticed and when there are less stressful moments, I can race through work related tasks with a speed and focus that I did not used to possess. My nodding at meetings is in all the correct places and, after over twenty years in this job, my classes don’t actually require my 100% attention.

My son is an expert mulitasker who can be heavily involved in a rugby game yet still read my frantic facial expressions from the side line that he needs to check his BGLs. He can quickly come across and do a check at half time without losing his concentration on the game. That is impressive.

GREATER COMPASSION-  It reminds me of when I was pregnant and I would get teary over ads on TV. I am hopeless when I see a family experiencing a difficult situation. It doesn’t need to be diabetes related. I could cry for the kids in my care who have extra challenges in their lives and I carry their stories with me and change how I deal with them and their families as a result.

This (Aretha Franklin I Say A Little Prayer)is my anthem as I’m looking in the mirror in the morning, getting my ‘game face’ on for the day ahead. 

I can see this in my three boys. They get that life can be tough for people for so many reasons and they are not quick to judge. This will be a great skill for them to carry forward into their adult lives. 

AN ABILITY TO FEEL LIKE YOU ARE FAILING REPEATEDLY YET NOT GIVE UP- I’m Scottish and I take my inspiration from Robert the Bruce ( here is the story) watching the spider in the cave. We chase the ever elusive perfect blood sugar levels. We very rarely get them in range for a whole day at the moment and yet every day I see my son get up and get on with life without ever complaining. 

We all try so hard to be perfect parents and diabetes has taught me that failure is ok! I cannot always meet the standards set, there is nothing to be learnt from this failure most of the time as diabetes does not acknowledge effort put in and yet we keep going and most of the time life is good. This, I think, is the most important of all.

The Big Snorty Snore

  It was dark as I walked towards his bedroom door. I stood in the doorway and heard the biggest, snortiest snore ever. Just one, then the gentle sound of regular breathing. I smiled, walked to the kitchen and put the kettle on.

That big, snorty snore tells me all is well with my boy. He had a really weird day yesterday with yo-yo levels so I worried about last night. My husband had done a 3am test. 

Only in a house with a Type 1 child would the middle of the night conversation be like this:
“D’you do the BGL?”

“Yip.”

“Good?”

“Yip.”

“What?”

“5.6”

“Love ya!”

“You too”

Who said romance was dead?

That big, snorty, teenage snore told me all was well, my boy was fine. Another day begins! I hope for a better day than yesterday!

Dear teacher

  
Parent teacher interviews last night. Great to hear that these teacher’s know my boy. I know that our diabetes educator is going to do a talk to the staff soon. Last week we had a near miss and the lack of awareness could have come at a huge cost to my son’s health. 

It has all been a reminder to us of how vulnerable we are when we send our children off. We hope that the teachers remember who our children are and what they need to do for them: it’s usually nothing but when things go wrong we need them to have a minimum amount of knowledge. I thought I’d been proactive but that was not the case.

I know this job. I’m a teacher too. This makes it even harder as I know what a tough gig teaching can be. I feel conflicted but making sure my boy is safe is my priority.

I wrote this poem at the start of this year when my son returned to school after the holidays. All my nieces and nephews in the Northern Hemisphere head back to school soon as we edge closer to our Australian summer. This is what I’d really like to say to the teachers.

 

Poem on a child’s diagnosis – I lost a layer of skin.

  
There is no denying that having a child diagnosed with Type 1 diabetes throws your world into a spin.
I know it’s my son who has Type 1, not me. I am completely clear about that. I also know that he does not spend his day worried about his diabetes. He lives the life of every other 14 year old boy: it just takes more organisation for him. 

I wrote this poem a few weeks after my son was diagnosed. I’d never written any poetry before this but it felt so good to write it down. The feelings I had were so raw and intense. Looking back, I can see that, as a family, we’ve all come a long way since then. That’s such a good feeling! 

The Boy and the Egg

  

A friend asked what it was like for my son to live his life with Type 1 diabetes.

I always struggle to give an idea of life for my son. There are metaphors about taming tigers and dragons but that’s such a strong and scary image. I like the image of the egg better. Eggs are small, fragile and complex, quite like a pancreas in some ways. 

I told my friend that, from my perpective, having Type 1 diabetes is like the Primary School project where students are given a raw egg. They must carry it with them at all times and take care of it. It can seem manageable at the start but generally by a day or so into this experiment, it’s not so much fun any more.

My son has been told that he can live a full life and do everything that any other person can. Sure, he can and he does but he has to carry this egg and not let it smash. 

He is so clever that he can play rugby whilst holding this egg.  What skill!

At school he does assessments and makes sure the egg does not roll off the desk and smash. The grades he achieves may not always be the highest but he’s there and that egg has never once fallen off the edge of that desk.

He hangs out with friends, manages to look cool yet still he arrives home with that egg intact. He’s the ultimate multi-tasker!

He can let me carry his egg for a while but I have to give it back because ultimately he needs to know that it’s his egg. 

There are times when I think he’d like to throw that egg right at my face as I want to check now and then that there are no cracks in it.

The biggest difference between my boy and the Primary project: he will have to keep that egg forever.  

I sip my cup of tea

  

I think that since my son’s diagnosis, I am a much stronger person. I’m a teacher. My job requires lots of energy and I deal with people all day, every day. I can fix things there.  Nothing phases me now. Solutions are found. I’m quicker at getting things done and better at connecting with people and understanding how to help them. Nothing at work is as hard as being the mum of a child with Type 1 diabetes.

I do not allow this to define me. I am so much more than this and yet…. when I sit with my colleagues for a cup of tea, I realise how different I am now.

I sip my cup of tea. I wonder how my son’s BGL is. I’m hoping that my boy will let me know if he goes above 15mmol on the way to school like he did the other day.  My friend talks about her toddler’s worrying cough.

I sip my cup of tea. I’m hoping the sport he has later in the morning doesn’t give him a hypo and that if it does, he’ll be brave enough to check his levels. Predictions can never be made as each day is so different from the last.  My friends discuss how untidy their children are.

I sip my cup of tea. I want to be like them.

I wash my cup and put it back in the cupboard ready for next time. I am a stronger person and the coughs and untidy rooms are part of the jigsaw of my world too but they are really small pieces in the puzzle of my life.

To my child

This poem could have been written for anyone with Type 1 Diabetes. It’s been inspirational for me to read the blogs of adults with Type 1 Diabetes. Their journey may have been longer. Fitting in managing Type 1 around a jobs, family and fun takes great skill. They truly are amazing!

I wrote this poem recently after I took my son who has Type 1 diabetes away with me to visit my family. I love getting one to one time with my boys. I’ve now done these trips with my eldest two and the memories we have from our travels together are so special. Now I need to start saving to take my third boy away! 

Sleep time 

I’m sure all parents of kids with Type 1 diabetes have weird sleep patterns. When did you last have a night of pure, deep, dreamless sleep? Do you remember nights before diabetes entered your life? My memories are fading fast.

Like most parents of kids with Type 1 diabetes, we were doing regular middle of the night blood glocose checks, at least twice a night, for the first few weeks after diagnosis. Thankfully for us this period coincided with the Christmas holidays and we stumbled though the celebrations, glassy eyed and sleep deprived like the parents of a new born: except we were middle aged and totally knackered.

We then cut back to 3am checks and now we check at 3am once a week unless BGLs are below 6 at bedtime or we have changed insulin doses.

This should, in theory, simplify life but my sleep patterns are pretty crappy now. My head hits the pillow and just as I’m about to enter the deeper part of my sleep, something totally crazy happens. I’m asleep but my body jerks awake, I often sit bolt upright and I start an internal interrogation. ‘Have I done everything?’, ‘Is there something wrong?’, ‘Is it me?’ and then I come fully awake and go through a quick checklist. ‘Was Levemir done?’, ‘Was the level under 6?’, ‘Have I set my alarm if I needed to?’ Once I’ve gone through this list, I’m supposed to be at one with the world and drift off…… NO BLOODY CHANCE!

It’s the same with the 3am checks! I’m not good at it! My son would happily tell you! My husband is much better at doing the tests than me. I’m lucky as he does more than his share of night time tests. I don’t know how to get it right. I’ve tried so many different ways. Which light source should I use to find his finger and do the blood test? I bought a head torch, congratulating myself on this idea. The look on my poor son’s face as I sat on the edge of his bed reminded me of my favourite BBC drama show, when they bring in the prime suspect for interrogation. That great idea was quickly abandonned.

I then moved on to using the torch on my phone. But how do you hold it whilst getting a hand out from under the pillow and using the finger pricker? I can tell you that holding it in your mouth is not the solution. You end up with your head tilted back at a 45 degree angle which then makes it impossible to see what you are doing? Try sticking your bottom jaw out further than the top one whilst keeping the phone clamped between your teeth. This works for about 15 seconds before a strong cramp will set in causing you to yelp in pain, thus dropping the phone on the floor and waking your sleeping child.

‘Sleeping child’ conjures up a beautiful image of a little cherub, neatly tucked into bed, curled up in a little ball, smelling of shampoo and that lovely baby smell! My sleeping child is a sprawling teenager, tangled in sheets and blankets, ready to do battle with anyone who dares awake his wrath!

I’ve now got a bendable study light on the bedside table. I put it on, angling it away from the bed but leaving just enough light to see what I’m doing. This works well enough if I’m able to jab the side of the finger and not accidently poke it into the soft middle part which fails to produce the juicy little red bead and means we have to start over.

All done? Sure, now back to bed. Sleep? You are joking! I’m fully awake and ready to go. 

Then there are the nights when you wake up at 3am and you don’t need to test. I read about someone who would wake instinctively when their child was having a hypo in the middle of the night. I lie awake worrying that maybe I should get up, that I too share this deep maternal instinct that knows when something is wrong. I lie there and do nothing. I don’t get up. I don’t want the burden of a ‘gift’ like that and I hope I’m wrong.

I wake up in the morning. I stand at his bedroom door and watch, waiting to see the rise and fall of his chest.

Guilty snacker

cookie jar photo

I have read about people finding secret stashes of empty packets and wrappers from their child with Type 1 diabetes. Confession time! In this house it’s me!

My boy with Type 1 is on injections and cannot snack between meals. How can I then munch on a biscuit with my cuppa whilst he looks on with sad puppy eyes? I’m a born grazer so my admiration for him in his ability to not snack is huge! I know he has not been given the choice and I would swap places with him in a flash.

Solidarity is a lofty goal and there are days when I only have my meals but, I love a strong cup of tea or coffee and it’s just not the same without a little something! Luckily, I have a huge pantry. It was the envy of my friends when we moved in. I find myself standing there, scarfing down a chocolate bar whilst staring at the jars of chia seeds and cacao. It’s all about balance isn’t it? I’m planning what to do with all those healthy ingredients!

Other times I’ll be sitting on my bed holding my cup with a little chocolate bar wedged between the pillows so I can nibble on it. I read a lot, so no-one questions me taking time out to devour a book. Little do they know about my guilty little secret!

Our kids with Type 1 are amazing! If my son stuffs up with counting his carbs or having a snack, it’s OK! At the moment, he at least tells me and we figure out what he could do if the situation comes up again. Knowing what I know, I would be the last to judge him!