Tara: Our second son was diagnosed with T1D, 16 weeks after our eldest.

Being on and out of lockdowns over the last couple years has disrupted a lot of things in our life. Our kids schooling, sports, work routines. It’s all been a bit chaotic but our little household of 3 kids, hubby and I have  rolled with the waves and found a different rhythm. 

 A positive to the waves, is us having more time together. We’re in each other’s space (and faces), we haven’t got a huge house where we would have the kids away from us. So we need to be clever, with everything having a multi-purpose. The kitchen table transforms to an office desk, the TV becomes an extra computer screen, a pop up and down table is a school desk. We’ve been working, living and playing closer together than ever before. 

So when in October last year, our oldest boy, Milan (12 yrs) began to go to sleep more, drag his feet when asked to do chores, go to the toilet a heck of a lot more and skull water like it was going out of fashion, it was pretty obvious to all of us. I took him down to the docs, to talk about general health and see if our local  doc could encourage him to maybe eat healthier and work-out more. Maybe that would help? I also asked if we could do a blood test and just double check diabetes - just to rule that out. My cousins daughter was diagnosed at a young age and so I was aware kids could have diabetes but I actually had no idea if that could be a possibility. The doc reassured us that it was highly unlikely but if I wanted to, he would let us test. 

A few days later we found ourselves in starship, with a confirmed diagnosis of type 1 diabetes (T1D). Milan, my husband and I were in shock. We literally did not have any idea about T1D, what it means, and what would happen from here. The whole starship diabetes team was amazing. They helped us from the very beginning to not only learn how to test Milan’s blood sugars regularly, inject insulin four times a day, and record everything, but they also helped us figure out what life will be like from here on. 

One of our biggest hurdles, was that Milan was about to leave his primary school at the end of the year and venture out to what felt like the other side of the world. He was heading to college that was about a 45min bus ride away, with extra curricular activities after school, new environment, meals and snacks and all away from his home community. If anything happened at school, both of us as parents would be at least half an hour away if traffic was good. For a newly diagnosed 12 year old, who would need to test and inject himself multiple times a day, this was big. 

So when we were introduced to continuous glucose monitors, especially with the Dexcom being able to send regular sugar readings to not only Milan’s phone, but to both us parents, the school nurse and even the diabetes team at starship, it felt like a saviour. This shifted those massive waves we were experiencing to being much smaller and manageable. Because it’s not funded, we shifted our budgets and included it into the extra costs that college has brought. 

We started to find our new normality. Milan is a vibrant outgoing and confident young man and took this all in his stride. He was just amazing. Just when school started back up, COVID started to hit our Auckland communities, hard. Throughout the schools, in the churches, shops, and our homes. Our whānau came down with it mid-Feb. Our 10 yr old, Lagitupu was the first to test positive and got pretty sick. He had all the classic COVID symptoms - high temp, snot, sore throat, cough. After a couple weeks, he also started to have nausea, cramping, vomiting and diarrhoea.

There didn’t seem to be any end and it was only happening when Lagi ate, so we started to suspect something else. With all the restrictions, it got a bit harder to just whip down to the docs, so after a few days, Milan and I thought maybe we should just check Lagi on his finger prick monitor. It came back high, and then his ketones came back as 4.0, which is very high. After a series of phone calls to family and the starship diabetes team, we headed into starship with our second beautiful boy. Distraught doesn’t even begin to describe what we were feeling. 

Our second son was diagnosed with T1D, 16 weeks after our eldest. Lagitupu has been amazing. He’s 2 weeks in, and has taken this all in his stride.  For us as parents though, we now need to consider if we only have Milan on the continuous glucose monitor, or fork out to have both of them on it. 

It feels completely unfair that we are now having to shift all of our financials to cover monitors that enable our boys to go to school, play rugby and soccer, jump on buses and hang out with their mates without second guessing if they have had enough to eat, need to inject themselves or have to stop and find help. 

This is now our life, and even though we are only 5 months into this, I couldn’t be more proud of my amazingly strong young boys. They have accepted their new way of living and eating and managing, wholeheartedly. I want only the best for them and will continue to strive to give them all that they need to be their best selves.

I wish for ALL T1D warriors to have that, including the choice to have glucose monitoring in their lives.