Two years

  Two years since I took my son to the doctor.

Two years since I saw the nurse and doctor exchange that look that told me everything.

Two years since I watched my brave boy do his first blood test.

Two years since he took the insulin pen, looked me in the eye and felt the needle pierce his skin.

Two years since we started to learn about carbs.

Two years since we slept regularly through the night.

Two years since we made last minute decisions to do things.

Two years since we met the educator who is our guardian angel.

In those two years:

An amazing young man has emerged.

He knows that you can’t always win but you can learn and move on.

He has grabbed life by the balls and twisted as hard as he can.

Type 1 diabetes does not define him.

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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. 

The Appointment 

  

It’s appointment time again. Twice a year we see the endocrinologist. This time the paediatrician will be there too. My boy hates these appointments. Diabetes does not figure large in our conversations at home. 

Here, his diabetes is front and centre of stage. I try to make it fun. But fun visit to the endocrinologist is an oxymoron! Not the endocrinologist’s fault:  he is unfailingly positive and encouraging, as is the paediatrician.We visit a nearby sports shop and my son inevitably comes out with a purchase clutched in his hands and he stares into the bag as we wait for his turn.  Afterwards, afternoon tea is whatever is requested in a nearby cafe.

Sitting waiting for our turn with the paediatrician and the endocrinologist, I look around the waiting room. Three families. 

One really young child rolls around the carpet, giggling and laughing. Her parents look on.

Another mum and son sit and stare at their phones. Nothing unusual there. Emails to check, games to be played.

We sit together: mum, dad and son. We talk to the various people who pass by: the dietitian checks in to see if we have any questions, our diabetes educator asks how things are going and we have a chat about my recent trip to France.

I look around the room. We are all in our little worlds and yet we are united by Type 1 diabetes. I cannot help but remember a statistic that I read earlier in the year which said that people with Type 1 diabetes (or in some cases their carers) make an average of 121 decisions around managing diabetes every day. In this small room about 363 decisions are being made daily. 

Chatting to the receptionist, he tells me that this week, twelve young people with diabetes are being seen each day for five working days, in this country town. The number of decisions being made blows my mind! 

I see the mum and son being introduced to the receptionist and some of the other people who work here. It’s their first visit. I look more closely at the mum’s face and it makes me want to cry. She smiles at everyone and chats but I can see the tiredness and the strain. Perhaps I’m just projecting how I felt back when my son was diagnosed. I wrote this poem then. I’d love to go over and chat and tell her it will get better. I want to give her the biggest hug, buy her a coffee or pour her a large glass of wine. 

Watching the younger child hiding under a chair, I wonder about just how you manage a diagnosis of a child so young. I feel a huge amount of admiration for these parents. Again, I’m comparing, as my boy was diagnosed around his thirteenth birthday.

Type 1 diabetes is such an invisible disease. Someone walking into this room would never be able to make a guess as to what we all had in common – but in this room alone an average of 363 really important decisions are made every single day, of every week, of every year. We need a cure!

PS the photo has nothing to do with the story but it’s of the gardens in Versailles and it makes me feel calm and happy whenever I look at it.

Ma Wee Scones

  ‘Ma wee scone’ ( my little scone) was a term of endearment used by old ladies in Scotland when I was growing up. You’d hear old ladies in the street looking at children : “Look at that poor wee scone over there, fell over his wellies and skint his knee!”. It fills me with nostalgia to think of it!

Now to life in Australia and I’m practising recipes for the fundraiser I’m hosting for JDRF  on 21 November. 

The boys are very willing guinea pigs. Everything has to be in mini versions as it’s a high tea. I’ve always avoided making scones due to that rubbing in of butter palaver but, to my astonishment, after a big day at work, I’m finding it quite therapeutic! 

I’m onto my second batch today. Twenty eight little beauties of around 15g of carb each. Pure butter and some of the weekend’s rhubarb and strawberry compote make it all worthwhile!

Now I’m mum to three wee ( OK, not so wee really! ) scones of my own. It’s funny how life can come the full circle!
  

  

Letter to my MP – Advocating for CGM funding

My name is ……. I live in ……… My son was diagnosed with Type 1 diabetes almost two years ago. He spent the week of his 13th birthday in hospital learning how to manage the reality of living with this disease.

He is an active, busy boy who plays cricket and rugby union for his school teams. In his free time he referees and plays touch football as well as playing rugby union and cricket. He rarely misses a day at school. Sometimes he battles through really high blood glucose levels to get his assessments done on time. He does quite well academically. He does not let his diabetes define him. In the background, the management that goes into keeping him at school and in sport is huge. He is, in my opinion, an invisible hero!

His Blood Glucose Levels can fluctuate from day to day for so many reasons (sport, heat, cold, the stress of exams, a growth spurt are all possible causes). We are in contact on a weekly, and sometimes daily,  basis with our incredible diabetes educator and almost every week the amount of insulin my son has to have is changed to avoid his levels going too high or too low.

We test him through the night several times a week and have, on several occasions, found that he was having a hypo (extremely low blood glucose) whilst asleep. Having access to a Continuous Glucose Monitor (CGM) at an affordable price, would allow the whole family to sleep and would mean I could walk into his room in the morning without the fear of finding my son dead. This is the reality of our existence. My son deserves better. All people with Type 1 diabetes, both young and old, deserve access to this technology at an affordable price. 

I watched the brave and amazing Donna Meads-Barlow speak on television about the horror of finding her daughter dead in her bed in the morning. Noone should have to go through this when there is a means to prevent it!

My husband and I do not earn a huge wage. We have two other children. We cannot afford the monthly cost of $480 and the set-up cost of around $1200.  We were funded for a week’s trial on a CGM last year and this trial (through our diabetes educator) allowed us to see patterns and make adjustments which enabled our child to have much better control. This, unfortunately, was short lived, as you need to wear a CGM more regularly to see the benefits.

In the next few years, he will complete his exams and will perhaps go off to university and then on to work. How can a young man in his early twenties possibly afford the cost of a CGM, the very device which would allow him to stay healthy, active and in the work force?

As a tax payer, I feel I have a right to ask for access to this potentially life saving device for my son,  and for all those, both young and old, who live with Type 1 diabetes.

He deserves the right to sleep through the night without worrying that he may go low and not wake up.

He deserves affordable access to a device which would allow him manage this disease with more confidence.

He will be a fully functioning, tax paying member of the work force and does not want to be a burden on the hospital system.

As a mum, and a tax payer, I ask that you please look into the funding of CGMs and advocate on behalf of all people with Type 1 diabetes .

Yours sincerely,

mum of type 1

Rhubarb and Strawberry Compote

Rhubarb is growing like crazy in the garden and strawberries are so cheap, tasty and smell delicious. I’m taken back to my Scottish childhood: rhubarb was one of the few things that grew easily and a favourite treat was raw rhubarb sticks dipped in an eggcup full of sugar. My teeth hurt just thinking about it! We would sit in the back garden crunching our way through this treat with dire warning about the poisonous leaves ringing in our ears.

 

I looked at a few online recipes and came up with this one of my own. It’s great added to yoghurt or plopped on top of muesli. 

 Less than half an hour from start to end. I sterilised the jars whilst the compote was cooking. Now I’ve got four lovely jars which may just last a few days in the House of Testosterone.