The Boy and the Egg Cross a Continent 


(I love this bust. I call it ‘Mother of Boys’. I saw it in a Château in the Loire Valley and immediately identified with her facial expression.)

Anyway, back to this blog!

Off he goes, cricket bat in one hand, Egg in the other! That’s my boy and, in my eyes, he is a champion before he has even left.

Being selected for the school’s First 11 cricket team was an honour, playing in the local school comp was fun and then came the cherry on the cake: the opportunity to join the team in a competition on the other side of Australia! 

First of all, what is it about bloody cricket and blood glucose levels? I sit on the side lines on a Saturday : a true martyr, looking just like the picture above. I’ve given up even trying to pick which child is mine, let alone try to understand the rules. Then comes the post match analysis of the game.  I smile, and adopt a Madonna-esque ( not pointy bra Madonna) facial expression and try to nod in the right places. Following this, we try to figure out the randomness of the BGLs (this time potty mouth Madonna can make an appearance) and we are stumped. (Hey, look, a cricket metaphor!).

Last week, wearing a CGM (funded by the local diabetes clinic) was a seemingly fantastic solution to working out what was going on. Great idea until there was an allergic reaction to the film keeping the CGM in place. Cue much frantic itching and the appearance of a nasty rash. A new CGM was put on after the weekend and was able to be kept on until the end of the week. The poor boy did have another allergic reaction but had kept quiet about it and soldiered on. The information gleaned from the wearing of the CGM has meant that the amount of insulin used around games can now be tailored much more precisely.

Challenge number one, was making sure the teacher leading the group had an awareness of Type 1 diabetes and was trained to use glucagon. This took some organising from our Diabetes Educator. She said her session with the teacher was fantastic and that the teacher was floored by what my son has to do every day. It is wonderful that he sees him as a ‘normal’ boy and he is, but there is so much work goes on, especially around sport, to make that happen. Now the teacher gets it, I can be confident in him being a good back up for my boy.

The next challenge was to find a family who would billet my boy. A lovely lady has put her hand up. Her sibling has Type 1 diabetes and her son is in the host school’s team . She has volunteered to do the 3am wake up so BGLs can be checked after a big day of cricket in the sun, presumably backed up with swims and back yard cricket. She is getting in all the hypo snacks needed and has sent texts checking we are all good to go. I am unbelievably grateful to this family. This had been my biggest worry as my boy sleeps through night time hypos. I am pretty tough and don’t cry often but I bawled my eyes out with sheer relief after I spoke to this lady.

After the school and accommodation were sorted, we needed to go through the action plan. We rocked up Friday afternoon to the local diabetes clinic. This date coincided with my son’s three year ‘diaversary’. On the way to the appointment, I really wanted my son to reflect on how amazing, fantastic and all round bloody wonderful he has been. As we drove, we chatted about all that had happened in those three years and I let him know in very clear terms how proud his dad and I are of him. 

My boy knows what he needs to do. He can carb count like a pro. He has a great knowledge of how to manage his diabetes. My hope is that, with all this knowledge and a good back up team, he can focus on having fun and playing some good cricket.

So here we are. Tomorrow is preparation day. Cricket gear needs to be pristine. Good clothes for going out folded. Full school winter uniform including blazer hung up ready to wear travelling. Then lastly we will go through the diabetes kit. A lesson on how to use the Frio packs, triple checking that there is enough gear to last a week and then we will wave him off in the wee small hours of Tuesday.

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