My Diabetes Family – Growing up with the #doc

My Diabetes Family

I keep seeing this #mydiabetesfamily on Twitter and on other Social Media and it’s got me thinking about who my diabetes family is. Considering that I do not have diabetes, why am I even asking myself?

My middle son has had Type 1 Diabetes for almost five years. He celebrated his 13th birthday a couple of days after he was diagnosed, becoming a teenager whilst in hospital (cue the gift of a denim patchwork quilt, made by a local sewing group, which is still over the end of his bed).

My son’s diabetes family is small. It’s us! His mum, his dad and his two brothers. He lives with diabetes every day but it’s not part of his online presence. That’s all the family he currently wants or needs. He sees his medical team: an endocrinologist and a diabetes educator and they are his medical diabetes family. He is busy living his life, does what he needs to do every day and I think he does an amazing job.

My need for a diabetes family has been much greater than his. I also absolutely believe that the diabetes family I have around me has helped me to be a better mum to him.

I’ve always kept my online presence as anonymous as possible. I don’t ever post my son’s name and never post photos that would identify us. Strange isn’t it that here I am then, with a fully functioning pancreas and what I believe is the most amazing diabetes family?

I feel like I’ve passed through all the stages of life with my online diabetes family. I stumbled onto the scene like an awkward teenager having written poetry and feeling very needy and in need of reassurance. I am so lucky that my clumsy and sometimes misinformed attempts to connect with people did bring me into contact with the #doc and more locally #ozdoc.

I found some great people to mentor me, read some amazing blogs and survived my “diabetes teenage years” as my son turned into a young man. I am so absolutely grateful for the patience that people showed towards me, for the advice, for the positive comments my blog received and most of all for the connections across the world that stopped me feeling so alone.

The next stage, was where I came into my ‘adult diabetes years’, becoming more of an advocate for my son and also for issues affecting the diabetes community. I got more involved, campaigning locally for CGMs for all those with diabetes and having some good conversations with our local MP. I also felt like I needed to pay back into this community and into the search for a cure or for research into ways to live with diabetes. Every year I’ve held a fundraiser for JDRF and with a great bunch of women. We put the ‘fun’ in fundraiser every year. This event allows me to reach out to around 50 top females and quietly educate and raise awareness while we drink bubbles and have a great afternoon together.

I’m fading into the background now, I’m trying to embrace my ‘middle aged diabetes spread’. I don’t write so much any more. My boy is almost a man. My job will never be done with any of my boys but it feels like I need to step back and let him go, well, as best as I can. The maternal tug will always be there. Some of what we have gone through in the last year has been heart achingly horrid and other parts have been amazingly positive but these are not my stories to tell. That’s my boy’s narrative and should he choose to share it one day, that’s his choice.

The contacts I’d made on #ozdoc and #doc and the invaluable advice received in private messages gave me the strength and courage to act on his behalf. Without this, I hate to think of how we would have survived. The very survival of these hard times, allowed me then to privately share some of the wonderful moments with people and make even deeper connections with some. My thanks are heartfelt and deep to those who were there for us.

There are a couple of mums, one in particular, who I’ve met on Twitter and we have been there with each other every step of the way. Chatting online through the night and sharing jokes and hopes and well as frustrations and doubts has meant that I can function fully and happily in my day to day life. We have plans to meet up one day and that would be just fantastic!

What I didn’t realise until recently is that I have become part of the ‘diabetes family’ that other people have. Over the last year, some people have made contact and let me know that they enjoy reading what I write. This was unexpected and such a beautiful surprise! I was backing away from Twitter and blogging as I’m not really sure what my role is going forward but I’ve come to realise that, in small ways, I can help others and perhaps be there in the background for them just as others were for me. Not quite a wise elder but more of a crazy Scottish sweary mammy whose heart is filled with love for this big worldwide community that’s been thrown together by diabetes. I salute you all!

Diabetes weather forecast for our region

Ok ladies and gentlemen!
On tonight’s show we are looking ahead at the diabetes weather forecast for the week.

It’s difficult to predict what lies ahead in the next few days.
Given the lull lately,
We predict a strong possibility of some highs 
Which will inevitably be followed by some unexplained lows through the night.
Be prepared for some sleepless nights as you batten down the hatches.

Those sporting fanatics amongst you will  no doubt be keen for predictions around your weekend games.
It’s finals weekend, adrenalin is pumping!
Make sure you avoid the post game lows by reducing those night time units.
Remember what happened the last time? 

Looking ahead to the weekend,
Not much activity is predicted 
The resulting change from the weekday routine may cause chaos in some households.
Don’t let that be yours!
Remember to count those carbs carefully and avoid random guesses 
You know you hate those three am wake up calls!

There we have it folks!
As you can see, forecasts are a fool’s game!
Nothing can be predicted with any certainty
So keep smiling and be prepared for any eventuality!

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.

This is how we do it….

We put one foot in front of the other.
We pray to the universe and the God we no longer believe in
To keep our child safe
Until he returns home
When we will happily carry his load.
We do all that we can
Each and every day
To keep our child safe from invisible harm.

We take solace in the normal moments:
The issues with homework not being done well,
The squabbling amongst teenage siblings,
The overuse of mobile phones,
The constant need to stay in touch with 765 ‘friends’ on Facebook ,
The obsession with animal videos on YouTube.

We rejoice in the victories:
A run of days with normal blood glucose levels,
Playing sport at 100% effort and staying in range,
The days out with friends jumping in rivers and riding bikes,
The meals out in restaurants, ordering the biggest chicken shnitzel,
The laughs around the dinner table, hanging out together.

This is how we do it.

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?

Motherboard Overload

image.jpeg

A motherboard is the main printed circuit board (PCB) found in general purpose microcomputers and other expandable systems. It holds and allows communication between many of the crucial electronic components of a system, such as the central processing unit (CPU) and memory, and provides connectors for other peripherals.(https://en.m.wikipedia.org/wiki/Motherboard)

Yip, that’s me -the MOTHERBOARD

Last month, I stopped and looked at my life and I felt exhausted. Why? I function as the motherboard for my family. I know EVERYTHING, I really do!

That’s when I decided to do something radical – switch off the motherboard. Pull the plug and sever connections, at least for a while!

The Motherboard

This motherboard has had enough.

She is overloaded.

There are many components in this system.

Connections are provided and updated on a daily basis.

There is the constant throb of white noise wherever she goes.

Free upgrades are anticipated and given in all areas.

The requests for constant add-ons are handled in a timely fashion.

Satisfaction is guaranteed !

 

But no more!

She can no longer be the repository of all knowledge.

Her memory has reached its capacity.

Wires are crossed.

Data is corrupted.

Sleep mode has been activated.

 

You will find her:

Reading a trashy novel,

Solving crimes on British television shows,

Trying to do yoga,

Baking up a storm in the kitchen.

Approach her at your own risk,

She may explode.

 

Goodbye 2015

   
Well, that was 2015!

We survived and thrived.

We shouted and forgave.

We laughed and sometimes we cried.

A year of learning that it’s OK not to be perfect.

A year of understanding that despite doing everything according to the plan,

Type 1 diabetes does not always play by the rules.

Increases in testosterone levels in the House of Testosterone

Mean there are now three males over 6 feet tall.

We took international trips and Type 1 diabetes did not spoil a thing.

Many cities were visited, carbs were guesstimated and new flavours were enjoyed.

Homework was done, after a fashion.

A new study was built to facilitate easier learning.

Yes, you may laugh!

Sport was regularly played through all the seasons,

With regular support and unwelcome reminders to check BGLs from the sidelines.

Rugby and football in winter were replaced by cricket, swimming at the beach and touch football in the summer.

We entered our third year helping our boy on his journey.

There’s an easy familiarity with the language around it.

There’s a realisation that control can be fragile

But there is nothing that has not been done.

Bring on 2016!

Disco Inferno (Otherwise known as a night out for parents of a child with T1 diabetes)

    

   

  
 
I wrote this after we had a great Christmas night out with all the people from my work. We still had a good time but I didn’t totally relax once that phone buzzed. My boy was only looking for some reassurance and I realised this the next day. 

I refound my mojo that night, even just for a brief while, and that was fun! It was all I needed to remind me that I love that man of mine too! He’s the Kel to my Kath! Best Christmas present ever!

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.