Our story begins….

Well, here we are… I have never written a personal blog post before, only for school!!

So bare with me…

I am Renee – wife, Mum of 2, teacher, daughter, friend, etc etc. A little bit about me to give you a background to how this started.

I got married to the love of my life, my husband Kodie in 2012, then we had a beautiful boy, Cooper in 2013 and another beautiful boy, Beau in 2016.

After Beau didn’t sleep for ages (ages!!!!!!!), I was diagnosed with postnatal depression and anxiety. Fast forward 18 months and I began receiving treatment for OCD and Generalised Anxiety Disorder at the Anxiety Disorders Clinic.

So you may have picked up, I have a few ‘worry’ issues… (MANY Mums do though, am I right?!)

So of course every time my boys are sick or not right, I google! Many a time I have gone to the Drs with diagnosis already sorted! Hand foot and mouth, Chicken Pox and Scarlett Fever to name a few (all correct might I add!!)

So when my baby Beau had been unwell on and off and out of sorts for a month, I googled ‘sore tummy and excessive thirst’…

Beau suffers from constipation, so Kodie and I had thought that his sore tummy was just that, but then he began needing a lot to drink. One night recently, he asked for 6 drinks! In one night!

I know this because Beau is my little limpet, a delicious little guy who doesn’t like being apart from his Mummy (although is very happy to go to preschool etc, but if I am around, he’s definitely a ‘Mummy’s boy!’) so for much of his life, we have accidentally co-slept. We start the night in our own beds, but 9 times out of 10, he comes into our bed, or now he has a big boy bed – I go into his.

So anywho, I goggled the sore tummy/thirsty stuff and ‘DIABETES’ came up. Of course, I am a worrier (we covered this earlier!) and always think worst case, but I thought ‘nah, surely not!’ but something continued to not be right. I couldn’t shake the word Diabetes.

I took him to the Drs and discussed the sore tummy, headaches, fitful nights, runny nose, sore ears, thirst and she said it was a virus (OF COURSE SHE DID! THEY ALWAYS DO!) that was fine. The next day he developed a temperature. Which he had on and off for the next 4 days. I asked my husband to take him to the Drs again on Saturday (I was at the hairdressers – don’t judge!!!) but he wouldn’t cos of course, he thought I was being dramatic. Read – MUMS KNOW THEIR BABIES!!!!

Beau was reasonably happy when I got home so I didn’t push it, but made an appointment for Monday morning (3rd December) at 8.15 which Kodie promised me he would take him to (I had no one to watch my class, so had to go to work) but I sent him with a list of symptoms and asked for a test for diabetes and also said I could be put on speaker phone.

They called me while there and I chatted to the Dr, a different one this time. Young, very young. And said I wanted Beau to be tested for Diabetes and she said ‘I highly doubt it will be that, but we will do a test.’ I said thank you and hung up, and didn’t think much more about it.

Poor Kodie then had to sit at the Drs with Beau TRYING to get him to pee in something (he’s still in nappies!) which he didn’t do! Kodie (KW I will call him here) took him home, where he peed in the boat thingy and then dropped him at preschool before returning the pee container to the Dr.

He gets in the car to drive to work and minutes later I get a call….

It was the nurse, they have made Beau an appointment for 11.30 to get a referral from the Dr (it was 10.24) instantly I knew it would be bad news.

I raced down to get my amazing friend and colleague to have my class and just walked out with my stuff, didn’t even say bye to the kids!

I rung preschool to warn them I was coming to get Beau and that I didn’t think it was good news, and their manager told me to take my time and drive safe. I was so shaky and nervous it wasn’t a fun drive to the other side of town…

I picked him up with the biggest snuggles and we headed to the Drs, where I had called the nurse back and asked if there was sugar in his urine – which there was.

So we got to the Drs and waited. And waited. Half an hour later the nurse takes us into a room and I ask again about the sugar in his urine and what that might mean, she said she couldn’t really say and to wait for the Dr. I was so eager to hear words that I just wanted an answer. I kept asking and said ‘Do you think it’s diabetes?’ and she said ‘it could be’ and I asked ‘what else could cause sugar in his urine?’ to which she replied, ‘I can’t think of anything else off the top of my head.’ My heart dropped.

Finally the young Dr saw us, she said to me that there was glucose in Beau’s urine and that she was sorry ‘but it was what you thought it might be.’ It was like she was scared to say it, and she didn’t for a while. My heart was beating faster but I just needed to hear what she had to say either way. She said it was likely that Beau had Type 1 diabetes and that it was big news, bad news and that it meant we had to go to the hospital right away.

HOSPITAL. WTF.

So, an anxious Mum, who is scared of germs has to take her baby boy to the hospital. Because he is sick. Really sick. DIABETES SICK. Her baby. My baby. My last wee baby, so my forever baby.

The Dr called the Paeds Registrar at the hospital who asked her to take a skin prick to check the glucose in Beau’s blood then before we went to hospital. I didn’t notice the number that was written on the letter because at the time, it meant nothing to me.

I called Kodie and we met at home to get wipes, nappies and my phone charger and headed straight to ED at Christchurch Hospital.

Ugh, the sight of it. Luckily, because the Dr had already spoken to the Paeds Reg and we had a letter from her, we had to only go to triage and then reception and headed up to the Children’s Acute Assessment Unit.

WTF.

KW, Beau and I were in our own wee room. When we walked in I said to Beau ‘Look, there’s your bed!’ and he said ‘No! My bed’s at home!’ My heart actually broke. A while later a nurse came to put some numbing cream on 3 different sites of Beau – on the inside of both his elbows and one on his hand. And we waited. For over an hour we waited. I tried asking the nurse if it was Diabetes but she said we would have to wait for the blood test.

Then we had to go to the ‘procedures room’ because they don’t like doing nasty things to the kids in their own rooms, so they feel safe going back there, SUCH a good idea! And the Dr and nurse worked together to put a needle in Beau’s hand to take 3 vials of blood. Omgosh, Beau was incredible!! Both KW and I were distracting him and he couldn’t see what they were doing and he was still, patient and calm!

They kept the tube in there and taped it, wrapped it all up on a wee board thing and tried to decorate it with stickers for Beau, who HATED the huge thing sticking off his hand and arm.

We went back to his room and KW left to get our big baby, Cooper from school.

Within 5 minutes of being back in our room, Beau shook his needle out from his hand!!!!! I didn’t realise until the Drs and nurses had to come back for another sample cos one ‘clotted’ luckily, they were able to get enough from another skin prick (again, in the procedures room.)

By this point, I’m getting hot and bothered. Beau is getting restless and Dora is BLARING on the TV in the room, Beau has watched snippets of Moana on my iPad all day and finally Cooper and KW get back from school.

I really can’t tell you how much I think I was asking people if it was Diabetes or not, like… I feel like it pretty much was, but no one had confirmed it to us. Like properly confirmed it. Looking back 5 days later, I am wondering why I kept asking. I guess I was hoping that it would be some other random virus that meant he would be better and we could go home. Somewhere in the haze of this wee room, someone (who? Maybe a nurse?) said that Beau had Diabetes.

Then a whole raft of people came in. The ‘Diabetes Team’. WTF. Who knew. A DIABETES TEAM. They brought this ugly backpack, and John, the Diabetes nurse starts pulling all this stuff out of it explaining each item as he pulls it out. WHAT. THE. ACTUAL. FUCK.

DIABETES.

There’s the ‘lamborghini’ of skin prickers and we are NOT ALLOWED to let the hospital use theirs anymore because they hurt our wee boy, but not OUR OWN one, that hurts less. Our own skin pricker. With needles. Needles. We have to use. On our son. Who has Diabetes…

KW and I were practicing with the skin pricker on ourselves and reading our Blood Sugar Levels.

Cooper was watching and listening with quiet awe. In this moment I realise he has grown so much. He’s 5 and a half and this is his life too. Our lives have changed forever. But this whole time I keep thinking, it’s ok, it’s only Diabetes. It’s not cancer. Cos fuck that. Cancer means death. Diabetes doesn’t, does it?

‘John, is the life expectancy less for people with Type 1 Diabetes?’ ‘No, they can live normal lives, do anything they want, sports, academics etc etc.’ PHEW.

My mind is flip flopping between ‘phew, it’s Diabetes, not cancer!’ to ‘Fuck, it’s Diabetes.’

Anyways, then we get transferred up to the children’s ward. Ward 22. Where we are told we need to stay for at least 2 nights. They tell me I am very good to have caught it so early. I have done well they say.

I think, I googled something, it was bad, and it came true.

I think, how have I JUST finished my treatment for Anxiety and really, my worst nightmare about kids sickness is here. I can’t help but think it is very ironic.

So we meet an older nurse in Ward 22. Pam. She gets out 3 insulin pens. Again I ask if it actually IS Diabetes. Pam says they don’t start insulin treatment if they aren’t sure it’s Diabetes.

Hmmm.

Yet in this moment, she skin pricks Beau and his number is a 5. GREAT! The BSL (Blood Sugar Levels) are supposed to be between 4 and 8, 5 is perfect! They must have it wrong, it can’t be diabetes, as his number is perfect and he hasn’t had any insulin yet. Pam assures me my son is a Diabetic.

I sulk.

Pam whizzes through a crash course on the 3 insulin pens and KW look at each other so puzzled and surely we can’t remember all this!! So many names, different time frames, different doses, different pens!

Luckily, the reason we are in hospital for 2 nights is to learn. John is going to educate us for the next 2 days to look after our son and his new…disease?

I might say here, they said that some kids come in so unwell because the symptoms can be so mild they need IV fluids and IV insulin, lucky our Beau is actually mostly well!

KW and Cooper head home to eat, get us some stuff and we hang out. Moana is on the iPad again. A friend brings me dinner. Another brings me drinks (non-alcoholic of course) I am thirsty but I am scared to drink too much as there is only one toilet for the parents in the 2 children’s wards! Actually. What a joke. What bugs are around here? I cannot cope, but I have to cope because my baby is sick. Lifelong sick.

We hear the positives. We caught it early. He is young. He won’t know any different. It will be easy for us to work on his diet and portions and food routines.

I am trying hard to listen. I remember what they said earlier.

It’s not our fault. NOTHING we could have done to prevent this. My baby’s body has done this itself. It’s an auto immune disorder. Completely random. Bad luck they even say.

Bad luck!

It’s not cancer, but it still sucks.

We don’t get much sleep that first night in hospital. Beau’s BSLs are high. Now I know what those numbers mean. The reading at the Drs was 27.7. It’s supposed to be between 4 and 8. He really is sick.

‘Ketones’ are thrashed around – what are they? Cos they weren’t big when we got to hospital (0.4), but now they are (1.9). They aren’t supposed to be big. I worry, but no one else seems to.

It’s morning time now. Tuesday 4th December. Wow, I was at work this time yesterday, with a normal life. Now I’m in hospital with my baby and needles, so many needles and so much jargon!! And so many different people. There is a Drs name on the door, I have no idea who he is and have to ask someone.

He hasn’t done anything visible for my boy so get your name off my door!

Our nurse is lovely, Chelsea. Young, pretty and Beau loves her. She makes him giggle. I hope we get her again tomorrow!

John tries to get us to take Beau to the ‘Activities room’ it’s kinda like a preschool. We take him in, so we can go into another room with John and a whiteboard to learn about Diabetes. Beau lasts about 40 mins before he needs his Mama. And Moana, always Moana.

We learn, and we listen and we ask questions and we make a good team. We fill in each other’s blanks and I think to myself, ‘hmm, maybe we can do this, hubby and me. I love him! We share looks like ‘WTF does this mean? How can we do this every day?’

There’s a dietician we meet. They say that we will now get a ‘Child’s Disability Allowance’ each week, then they tell us of a contraption we will pay for with this money to save Beau getting skin pricks. It is a disk that sits in his arm (his tiny arm!!!!!) and we can get his BSL from that!

A disability allowance.

Does my child have a disability now?

We hear lots more words and we work hard to stay focused but we are allowed outside at lunch time to get more coffee and take our baby to see the ducks. In the fresh air! Omgosh we were happy to be out there, it was also 28 degrees!

Back inside and more learning. I would write more about it but I just can’t. I couldn’t tell you what it even was.

My friend/boss messaged that she has booked a reliever for me next week too. I am finished work for the year. Just like that. Walked out on my class and now won’t be their teacher again and won’t work with my amazing friends again. I’m sad about it but now calm, thinking that I can put all my focus and energy on Beau (which I was doing, but now didn’t need to worry about school/preschool etc!!)

Because I AM NEVER LEAVING HIM AGAIN!

Another friend brings Cooper to the hospital from school and takes him and Beau out to Hagley Park while we talk about yucky things, like a low that might make Beau unconscious and we have to inject him with a special orange injection. After Beau’s BSLs being so high, this low stuff seems so foreign to us.

We are both scared of it and we don’t like this conversation. I don’t feel well so I have to leave for a bit.

Another friend has met the boys at the park and brings a bag of treats (including dinner, cos ya know, I haven’t eaten much at all!) but there are 2 nurses waiting for KW to do his first insulin shot.

Overwhelming stuff. He did it, and he did so well! I am scared to do mine tomorrow. KW doesn’t like needles so I am so proud of him!

I send KW and Cooper home so Coops can get to bed at an OK time, he’s coping so well but he’s tired. We are all tired.

When they leave, I get ready for bed and jump in next to Beau. He quickly falls asleep and I stare at his perfect wee face and become so upset about his body being so horrible to him! How dare it make him work this hard!?!?! How long has he been feeling sick for?!

John said today that he is still making some insulin himself, but only 10-15% and that eventually, he will be making none, even with the insulin treatment.

There has also been talk about an insulin pump, that they think Beau will be a good candidate for, in March/April next year. It means one needle staying in him always and being changed every 3 days compared to the 4-5 insulin injections he is getting a day now.

Yup, 4-5 shots a day. Plus 6-8 finger pricks.

And do you know, my baby handles them like a boss!

He gets into the position for us to jab him in the bum for his insulin shots and sometimes even stays still for them. Cos you need to count slowly, for 15 seconds with each one. I know. Can you imagine. Did I mention Beau is 2 and a half!!!!!!!! He doesn’t like the skin pricks but you know, here we are 5 days in as I write this and he has got so much better already!

Well that’s quite a bit for my very first blog post! Time for sleep and I’ll fill in the rest of the gaps another day!