"That afternoon when I picked him up from school it was clear he had taken a turn for the worst. His vibrant blue eyes no longer sparkled, and he was drowsy and breathless."
Opposition leader Bill Shorten has promised $50 million in research to find a cure for Type 1 diabetes if Labor wins the upcoming federal election. Under the plan, Labor says it would increase the number of trials while also translating findings into new technologies and treatments. Funding for the Juvenile Diabetes Research Foundation Clinical Research Network would also be extended to 2024, with the current funding due to expire in June. Image: News Corp Australia
I knew something was wrong with my 6-year-old son. Call it Mother's intuition or maybe the fact that I’m a Writer and a Marketing Manager, it’s my job to understand ‘people’ and read verbal and nonverbal cues. He got so skinny over the Xmas break that he looked like he had anorexia.
“Oh, its normal at that age, they are fussy eaters, he’s having a growth spurt” they said. Arms rail thin, ribs jutting out, skin stretched so thin over his cheek bones it was almost translucent.
He completely lost his appetite, but he begged for ice-cream and watermelon daily, it was like he couldn’t get enough sugar. It was summer holidays and let’s be honest rules and routines loosen. Dinner sometimes went uneaten. I tried to make him eat it, but he refused, so I filed it away for worry time. That’s the time after 10pm at night when I do my serious worrying. He’s addicted to sugar I lamented, how the on earth am I going to fix this?
'In just five days, he was gone'
Christian in emergency. Picture: supplied.
It turns out that was least of my worries
Completely out of the blue he started wetting the bed. He’d jump out of bed at first light, run into my room, cheeks pink with embarrassment and say, “Mum my bums sweaty”! Before dropping his wee soaked undies in a scrunched-up mess in the laundry and run off to hide behind his iPad. Then he got really thirsty and started drinking copious amounts of water. He would pinch my gym water bottles and hold onto them for dear life in his little hand, sipping vigorously like he was dying of thirst.
“Is it good that I’m drinking lots of water Mummy?”
Well yes but why?
He was very agitated the day before school went back and on the first day he came home complaining of feeling yuk and vomiting in his mouth.
“It’s probably nerves about starting a new class, I was like that as a kid”, said my husband.
His new teacher noticed he was off, which reinforced my suspicions something was not quite right. A couple of days later I booked a Doctor’s appointment and that afternoon when I picked him up from school it was clear he had taken a turn for the worst. His vibrant blue eyes no longer sparkled, and he was drowsy and breathless. Then he started slurring his words when the GP asked him questions.
Sarina and Christian Brunott at the Monash Children's Hospital. Picture: supplied
What the hell is happening?
I suddenly felt frightened and out of my depth, something was seriously wrong. After a blood sugar test and my explanation of his deterioration the Doctor called the diagnosis and advised us to get to hospital immediately.
“You need to take him to Emergency now! Its Type 1 Diabetes, I’ll call through to Emergency now and they will be waiting for you,” were not the words I was not expecting to hear.
The following few hours were a blur of teary phone calls. Hugs and reassurance from a friend at her front door as she took in my daughter and feeling frozen in shock as we were ushered past kids and their parents patiently waiting in the emergency department to be seen. Feeling bad that we were given priority but then the realisation that what was wrong with Christian must be serious.
I remember the Emergency Nurses wore scrubs with cartoon characters on them, they were assertive but kind. They bustled around us all light and breezy, while talking Christian through the process of fitting him with a drip in either arm of insulin and fluids.
We were waiting on one more test result to come back before we treated for Kawasaki’s… The only symptom that wasn’t exactly right for Kawasaki’s was his temperature wasn’t getting over 39c, but it was in the mid-high 38c – but the doctors believe the steroids he had been given on Sunday evening were affecting his fever.
“I hear it’s your Birthday next week mate? Just a sharp scratch. Awesome! how old are you turning? Now a warm feeling. Where are you having it?”
They were experienced professionals at dealing with kids and they made me feel we were in safe hands. Doctors would entered the room, look at notes, then at a computer, talk numbers, try and explain to us what was going on, then leave. My husband and I were like deer in headlights, nodding our heads in shock but not really comprehending much.
Mal and Christian in hospital. Picture: supplied
Set Smart Limits
It was a crash course
After a night in Emergency we went on to spend four days in the Children’s Hospital enrolled in a crash course in Diabetes management. It was overwhelming but as the days went on it started sinking in, this is our life now. Days spent with dieticians, diabetes educators, social workers, nurses, specialists and registrars.
Christian ate and ate, he was making up for all the recent weight loss.
Phone on silent, I didn’t have it in me to speak to anyone, but it beeped constantly with friends and family checking on us. I would cut and paste the updates and go back to watching my brave baby get his little fingers pricked and milked of blood every half an hour.
Injections of insulin, blood tests, ketone tests and food education lessons perched on the end of his hospital bed. Nodding my head but only really taking in half of what was being said, because I was in a constant state of anxiety.
We paid visits to the Starlight Room for a rest, a bite and to play computer games with sweet kids with haunted eyes who smiled and laughed despite their serious illnesses.
Then it was time to practise giving the injections. I was shaking so much on my first attempt, Christian screamed out in pain and said, “This is your fault, you brought me here!”
“Yes, she did mate, but that’s because you were very sick, and you needed to come to hospital and get medicine” interjected Anne our Diabetes Nurse Educator as she reassuringly smiled up at me and held him down as he screamed.
We're in a whole new world
It’s been about six weeks since Christian was diagnosed, and it has turned our world upside down. Most people think they know about how to manage type 1 diabetes but it’s very hard to understand unless you have lived it.
There is no rest, no day you can have a break from the constant monitoring blood sugars and what they eat for every meal and snack. Then administering four injections a day, severe moody swings, lows (what diabetics call hypos) a bad hypo can render them unconscious and then the highs that can take us back to hospital.
Text messages back and forth with his teacher every day to check his levels and see if he is ok and lying next to him in bed worrying if he is breathing too shallow.
It is relentless but as the days go by it does get easier. Weeks ago, I knew absolutely nothing about diabetes, I’d never held a needle before or been to hospital for a serious illness. I have learnt so much in such a short time and I’m still learning.
I presented to my son’s class and staff the other day, so the kids understood where he had been and what his condition is. I wanted them to be educated and informed and not treat him any different to the others.
Play with your children. Let them choose the activity, and don't worry about rules. Just go with the flow and have fun. That's the name of the game.
It’s a roller coaster but we are slowly getting there and there have been tears, tantrums and good and bad days but yes, as everyone keeps saying, it will become part of everyday life. On reflection it blows me away, how we as humans, adjust so quickly when we have no choice, our capacity to learn new things and how resilient and courageous our beautiful kids can be. I hope this story helps to educate readers about type 1 diabetes. You can find out more here .
Sarina Brunott. Picture: Supplied.