I wanted to share our story | type 1 diabetes
byron bay blues festival 2022
The main symptom to us in the lead up to diagnosis was that he would drink a whole bottle of water & run to the bathroom straight away. This was small, but standout change that made us monitor him.
So many of the symptoms could be put down to being a toddler. Another one was he was complaining about a sore tummy, which was conveniently when we asked him to eat his dinner. So, he would go & rest on the couch while we all finished our dinner.
Another thing that now stands out in the week of lead up, was a day at pre-school I had picked him up & he was still asleep – he took him around 10 minutes to wake him, I had a moment for fear when it took me this long, however he ended up waking & was fine.
My partner Asha has 2 bothers, one in which was diagnosed with T1D when he was 11 (now 37), so the excessive weeing was something that stood out & a potential key indicator of T1D.
Monday morning, I went off to work & made a “let’s just check” appointment for Ryder.
I will be forever thankful for the doctor seeing Ryder that day & also how thorough she was. A lot of people’s stories are that they see multiple doctors & do many visits begging for answers before diagnosis.
The first & only thing she did in that appointment, was prick his finger - his blood glucose level was sitting around 12 - someone without T1D would be sitting around 4-7ml of glucose per litre of blood.
At the same time Asha called to give me the news of going straight up to emergency…. I tested positive to Covid.
Asha dropped Alaska off to me, we packed a bag and Asha & Ryder would spend the next week in isolation in the hospital with everyone in PPE around them, learning how to keep our child alive using insulin needles.
Meanwhile, I was at home isolation with Covid & a toddler- no idea what was happening in the hospital or what it meant for Ryder & our families life moving forward.
3 days rolled around; Asha & Ryder contracted Covid & so did my daughter…
After a week in hospital, they came home & we were all back together… I had started feeling nauseous but put it down to Covid.
Asha had to start teaching me how to work out how many carbs are in foods, how to give needles, how to put a CGM (continuous glucose monitor on), how to prick his finger to manually check his blood, how to read a chart to work out how much insulin he needed vs carb intake& what would happen if we didn’t give him insulin or he dropped too low or if he was too high.
I am not a numbers girl & neither Asha nor myself had ever been ones to read the back of the pack of food. All this alone, puts a huge strain on a relationship - as we worked out, we both learn completely differently! We had also become a carer & nurse... not just parents.
2 weeks later, we were to find out that the continuous nausea was because I was pregnant with our 3rd baby!
Asha took the next 6-8 months off work & would sit in the carpark at Ryder's pre-school to give him injections for every meal & also track his blood glucose levels. He would spend his time sharing, training & ensuring Ryder was safe in the environment. Ryder going back to pre-school was a priority for us.
The next step for us would be for Ryder to receive a pump, however the wait periods for this are extremely long. I immediately increased our private health cover & 6 months later in October 2022 - Ryder received a pump & this allowed Asha to step away from pre-school, as daily needles were no longer needed, however carb counting & 24/7 monitoring is still VITAL.
We still are in contact all day long via text & phone calls to confirm insulin given to Ryder & what sugars he needs to be given if he is dropping low.
We change his pump every 2 days, which is a needle that sits at the top of his bottom & feeds insulin through 24/7. This definitely doesn’t “fix” it all by any means, however he much prefers this over his 6+ needles a day which he was having. He may change his mind as he gets older & doesn’t want to wear a pump in a belt around him all day & all night.
Then following this, every 7-10 days we change his CGM (continuous glucose monitor) – which talks to his pump & also his mobile phone which needs to be within 6 meters of him at all times to ensure we can see what level he is.
T1D affects every single part of one’s life. Our family dynamics is a huge thing we manage daily with 3 kids – as Ryder gets a lot of ongoing attention & lifesaving “treats” sugars- which is very hard to explain to a younger sibling that it is his “medicine”.
Technology has come so far over the past 20 years & my hope is that it will become better & better & help Type 1 diabetics live with less worries in life & be able to live more in the moment and feel safe & secure.
There are still days we grieve. Tears at night or in the shower.
When photos pop up from pre diagnosis - it reminds me of those days we took for granted. The ease of life. The simple things of having your child run around, go swimming, go to the beach, jump on a trampoline, have an ice cream or eat hot chips or watermelon, without having to worry or stress or fear about being too high or too dangerously low.
Ryder, our darling heart… is so brave, so resilient & so incredible the way he has taken this disease on! We are forever in awe of him.