Veni, Vidi, Lusi, Vici 


Veni, Vidi, Lusi , Vici- I came, I saw, I played, I won!

 If my son had a Latin motto it would be this! Julius Caesar take a back seat! 

There is none so fierce as a 16 year old boy determined to play cricket like a pro.  A flight was taken to another time zone.  Night time lows and day time highs were navigated with unintrusive help. Carbs were counted pretty successfully. The results of each game (read ‘battle’) were dissected on the side of the field.  Whilst cricketing tactics were openly discussed, my boy waged a silent campaign.  

He fought off heat, then cold. He made intricate decisions based on activity levels. The war, however, was not won by type 1 diabetes. My boy owned his diabetes and he dominated it!   He took a big step towards independence. The team performed well in a tough pool but the actual results of the games don’t really matter as the real victor is safely tucked up in his bed, back home with us, smiling to himself and reliving  moments of glory on the field.

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That boy and the egg is growing up.

The boy and the egg
Is growing up
He now carries his precious egg to a part time job.
He didn’t tell of his egg’s existence on his application as he doesn’t feel it is a disability.
Time has moved on.
He hasn’t felt brave enough to show anyone his egg.
I worry that he finds it a burden and is embarrassed by its presence.
I fear he may not find compassion and understanding when he is brave enough to show it to others.
What if he is rejected?
Not telling them about the egg is equally terrifying.
It’s real and it exists and if it cracks one day,
People need to know.
Yet and still,
It hasn’t cracked.
It isn’t broken.
He continues to live the length and breadth of his life.
And me?
I need him to be safe but
I want him to be his own man,
To find his own way.

Message Monday- My dreams and hopes.

Why the French title? Sometimes French words just sound better!

My hopes and dreams for my son who has Type 1 diabetes are so important and keeping positive about every aspect of his future keeps me motivated. This is the same for all three of my sons but, in the face of so much negativity around diabetes, it becomes all the more pertinent when you want to keep the image of a bright, positive future alive for a teenager with Type 1 diabetes. 

This time last year I stumbled across diabetes blog week. I found blogs by other parents and suddenly I didn’t feel as alone. From this grew the idea that perhaps I could write a blog too. I spend so much time thinking (but not talking) about my son’s diabetes, so why not write about it?

One of the first posts was a poem I’d written. I am not a poet. I’m a mum of three boys, a wife and a full time high school teacher. Walking was my sanity in the early days after my son was diagnosed. I’d throw my self out of bed and into my walking gear and pound the streets. My head was trying to make sense of what was happening and I found myself constantly reliving the day of his diagnosis. 

I’m pretty together in my working life and didn’t find myself often in a position of helplessness yet here I was,  feeling raw and exposed. I wrote this poem and it felt just right to share it with others who understood the feelings it expressed. The connections I’ve made through sharing this blog have given me the enthusiasm and desire to continue, albeit more sporadically. Making connections with other parents online helps so much when there is a absence of connections in my ‘real’ world.

I love the diabetes online community the most when I feel connected or when it gives me messages of hope. I know the reality, the potential future complications for my son, but I try to help him deal with his reality with realism and, together, we face each challenge as it comes. I love to read about those who have lived their lives with diabetes and thrived in the process. I don’t necessarily mean by climbing mountains or swimming across vast oceans. Things like finding love in the midst of diabetes chaos, working at jobs which are fulfilling, travelling and experiencing the world would be the pinnacle of success in my book and those are the blogs which fuel my hopes and dreams.

Now two and a half years after diagnosis, I know my son and our family have come a long way but I read this poem and I’m right back in that day. It must be around a year since I wrote my first blog post and it feels right to connect with these feelings again.

 I lost a layer of skin

I lost a layer of skin
As we entered the hospital on the day of the diagnosis.

I didn’t feel it fall off. It certainly didn’t hurt.
It gently slipped off with less than a whisper, unnoticed, like a soft, satin scarf.

I wish I had noticed it leaving.
I imagine it floating gently over the roofs of nearby houses,
Carrying with it the half formed dreams I alone held for my child,
leaving behind only rawness.
Over days, weeks and months a strange new layer has grown in its place.
It’s a bizarre contradiction – tough yet sensitive.

Watching the drops of intense ruby blood makes it want to shred itself
Glimpsing needles pierce the stomach where raspberries were once blown makes it ache.
Seeing the somber eyes of a child learning to cope leaves a hollowness.
Dragging a weary body through night times of wakefulness leaves it feeling prickly.

It’s certainly more careworn than the layer it replaces but it’s strong and it needs to be.
It bears the brave scars of battles: some internal and silent, others of epic proportions.

Hiding the multitude of maternal fears which largely remain unshared have hardened the carapace.
It has to be tough for the times when it’s all too much for a child who just wants the old normal.

The old normal isn’t coming back.
I like to imagine that I’ll find that layer of skin again someday and fashion a purpose for it in this new existence, for there is hope.

Move over Miss Marple

 

In the words of Taggart,

“There’s been a murder”

But there is no body.

A pancreas has been killed

And it’s inside my son.

My dodgy gene pool looks like the prime suspect

With weird and wonderful auto immune diseases abounding

On both sides of my family tree.

No happy valley here.

Just a predisposition

And the elusive lightening strike

That leaves him with needles and insulin pens: the wire in his blood.

I spend my days as a silent witness,

Looking for the ‘green around the gills’ tinge of an impending hypo

Trying to work out the reason for sudden high levels.

I snuffle about, metaphorical magnifying glass in hand,

Forensically examining the carb count of a recent meal,

Querying the impact of an activity or lack thereof,

Constantly learning new tricks.

There is no right or wrong in this game.

He is above suspicion.

Sleepless nights feeling like I am waking the dead: a teenage boy in deep slumber.

Blame is never attributed for the weird and wonderful numbers which

Randomly appear on that small screen.

No offence is taken by this amazing child but

No convictions will ever be made for the death of a pancreas.
Edit – how many detective shows can you find reference to?

The sisterhood of motherhood

 Two years ago, when my son had just been diagnosed with Type 1 diabetes, a work colleague told me about the mum of a student where I teach. My colleague told me that she was in the school at that moment and walked me over to where she would be. I had to stop for a moment: I felt really overwhelmed, was nervous about meeting her, worried that I wouldn’t know what to say and felt scared about being emotional, especially as I was at my work! 

I’d never taught this student or her siblings and had never come across this mum, yet, from when I first met her, we shared a bond: a child with Type 1 diabetes. She was much more experienced than me, as her child had been diagnosed several years before. As we sat in the school yard, she took my hand and told me it would get better and that I would survive! 

Luckily, I was wearing large sunglasses and had my back to the yard as I lost control and had a snot-filled, wobbly-chinned cry which lasted several minutes. Who knows what she could really understand of my Scottish warble but she understood enough to know that I needed this connection.  This lovely lady was the only other mum of a child with Type 1 diabetes that I had met and she totally got me without even knowing me. I so needed for someone who had shared a similar experience to give me this positive message. I also really needed someone to ask how I was, as my total focus in the previous few weeks was learning all I could about Type 1 diabetes and helping my son manage it. 

Nowadays, we catch up on the side of sporting fields on random occasions, as my eldest son plays sport in the same team as another of her children. We laugh and giggle, rant and rave and do not stop talking for the entire time we are together. We have more in common with each other than children with diabetes.

I hadn’t seen her for a good few months, until today. I bumped into her in the school yard, approximately two years since we first met and in almost the exact same spot. We gave each other the biggest hug and we swapped stories about our children. I was able to tell her about the crazy night we had just had with levels of 24 at bedtime and the hourly checks we did, looking for ketones and giving extra shots of insulin to bring levels down. There was no need for explanations about what it all meant. She put her hand on my arm and said, “Look at you! You are doing a great job and surviving!”. 

She reminded me of that first conversation two years before and I realised how far I’d come. It was good to take a moment and reflect on those two years. I’d lived through many crazy nights, held down and even enjoyed my job, done my best to keep the rest of the family happy and importantly, my son is thriving. I love my three sons and husband but they definitely deal with their emotions differently from me. 

Online, thanks to the Diabetes Online Community, I have met an amazing bunch of mums from around the world and we often joke about meeting up one day. Knowing what I have learnt about of few of these fabulous ladies, I know we’d have a fun time together.  I have also made connections online with some great bloggers (male and female, young and young at heart) and people on Twitter. Writing this blog helps me process my reality. It is my reality and I’m acutely aware that it’s about me and how I deal with being the parent of a teenager with diabetes. It feels a bit like I’m naval gazing at times but, hey, it works! 

I live in rural Australia, in a beautiful coastal area, far from any big cities. We are supported by an amazing Diabetes Educator, have a great paediatrician and access to a whole team of people. My friends are wonderful and have really taken the time to understand Type 1 diabetes. In my day to day life, I have few conversations about diabetes and very little to do with people who have connections to diabetes. That doesn’t reflect how much time I spend thinking about it so this is my outlet.

My connection to this other mum is important to me. She remains, to this day, the only other mum of a child with diabetes that I really know. She has mentored me,  albeit in a random and often hysterical way. I feel honoured that she has taken the time to do that and hope that maybe one day in the future, I can do the same for another mum. 

Supermarket Sweep. 

  

Shopping in a supermarket during the holidays with a friend turned into a game show. She would throw items at me and I would tell her the carbs or in some cases guess. We’d been discussing what to buy for a meal and she was asking me about what kind of ingredients I’d buy to make sure my son had the correct number of carbs. 

Luckily, we were in a town far from home and had left everyone at the pool. As we skirted up and down the aisles, my friend lobbed, tossed and violently chucked various food items at me, demanding the carb value:

Her: Catch, bread one slice?

Me: Ha! 15g per slice, if not too thick! Too easy!

Her: Pasta?

Me: Ouch! One cup of penne, 30g, one cup of spaghetti, 45g! Why? No carbs in air, mate!

Her: Choc bar? 

Me: Ooh, now you’re talking! Flick me a Flake at a good solid 15g. Easter’s coming with Creme Eggs coming in around 30g each. What, they’ve got them already? Gimme two, quick, for the car on the way home, of course!

Her: Apple?

Me: Small fist size, 15 g per apple! Haven’t you seem me groping my way through the apples like a dirty old man?

Her: Banana? 

Me: A bit like an apple but reference another body part! 15g for small!

We laughed, giggled and guffawed our way around the supermarket! Never has carb counting been so much fun! Getting back to the car, we packed the boot and jumped in. I handed my friend her Creme Egg and we sat blissfully munching. She admitted to not knowing much about carbs and I laughed and said I hadn’t either until we had to very quickly learn after diagnosis. I wrote this poem during that initial period of learning:

 

Life is good


When an unwelcome visitor, such as Type 1 diabetes, comes and takes residence in your family, life changes. Things feel really serious for a while as you get to grips with counting carbs, calculating insulin doses and helping your child deal with the reality of living with Type 1 diabetes. All of this takes time.

My way of dealing with it was to keep life simple and not put too much pressure on myself. Feeling tired from initial nightly testing backed up with a full time, busy job meant I didn’t socialise as much as I had before. I’d see a few friends but not as many as previously.

  

Two years into this journey, it was time for some fun! What a great afternoon was had. Around fifty fab females arrived, dressed in black and white, bearing silent auction items, extra bottles of bubbly and above all a desire to have a laugh and raise money for a good cause.


Jellybean count – 194 painstakingly counted jelly beans. Two jars!

Dahlias for diabetes! I made about 15 different dahlias and sold them all. I think I should have charged double as they were snapped up pretty quickly!

This was such a great way to reconnect with all my extended friendship group. We had such a fun afternoon,  eating, laughing, drinking prosecco to the backdrop of a sunny Australian afternoon and the beat of a Seventies playlist on Spotify. Most of my favourite things in one place.

I didn’t involve the men in the House of Testosterone but on Saturday morning the lawn was mown, the vegie garden was weeded, bunting was hung up and the whole place looked like you want your home to look like all the time. They certainly did come through for me.

The next morning, I counted up the money and we had collected $2200 in one afternoon. My lovely, patient husband asked, ” Do I get you back now?”. Planning this event, whilst enjoyable, was very time consuming.

My middle son who has Type 1 diabetes came up, gave me the kind of cuddle that melts a mother’s heart, and said,  “Thank you, mum”.

On Monday morning I arrived at work with lots of leftover cakes and goodies. Many happy faces and a few extra dollars were collected. I basked in my little bubble of contentment when a work colleague, a lovely, normally witty man, reached past me, grabbed some cake, asking, “This won’t give me diabetes will it?”

Back in the real world now, I looked him straight in the eye and said, “That is not funny on any level, ever!” He later came and apologised. I don’t blame him but perhaps I can help educate him.

I am still feeling wonderful. Lots of money has been raised for a good cause. I’ve realised how lucky I am to be surrounded by great people. My son lives in this same community and I feel there are more people around him now who understand better.