The Boy with the Blue Eyes

Kia ora to my loyal blog followers, I haven’t written anything in a really long time.

There are a few reasons for this

• one – there is not a lot of new stuff to say
• two – Beau has become very concerned with what I tell people about what he says
• three – I have next to no time, even if I WANT to write

But anyways, here I am… ready to say some stuff. Or not. But ready for my chosen therapy to hopefully work lol

As always, there are ongoing struggles with Beau’s diabetes. Lately it’s been at school and they have called me not really that happy that some days he is needing to be watched from 9.30-2.30, requiring even more funding out of their pocket for the Teacher Aide to be paid. (They fund an extra hour a day and have done since Beau started but they really want to stop that now.)  OR they are upset as they have to double up the classes while the teacher deals with Beau’s lows (they are mostly lows) so I have been in touch with the Diabetes team again and changed some more settings so hopefully the lows can be avoided and we can figure out when to use Beau’s allocated 3 hours a day support.

Ugh. So hard as sometimes he won’t need watched at all and sometimes he will need watched for a lot longer. If required he can do his own finger pricks and with support he can bolus himself for his food but the tricky thing is, he is still hypo unaware – which means he can’t identify when he is low and needs sugar immediately.

Anyways, we are having a meeting at school this week so will see how all that goes…

We are still on the trial and have decided to stay on it until the full year is up, as this means the sensors and good finger pricking strips are free! And from July we will need to pay $100 a sensor that lasts around 7 days. (Not more, only less.) Remember though, we do get the Child Disability Allowance of $46 a week so that will help.

ANYWAYS, many of you will know this year I have also gone back to work full time. This has been really good for me as I am loving the consistency in my class and building up really strong relationships with my awesome kids and their families. It is hard though, in many ways, like the tiredness (!!!!!!!!!) or the not being able to see as much of my own kids after school, or even get into their classrooms and chat to their teachers. So we are still finding our feet, I am just so lucky KW works from home most of the time so he can do drop off and pick up (of Beau, Coops rides his bike to and from school by himself.)

I am still always on my phone so I can message the teachers and TA’s about Beau and his care and the technology etc and Mum is helpful as she comes in every 2 weeks to help with the load and also when KW goes away!!!! But I don’t check Beau’s levels now, I just have my phone on me as if I am needed – whoever is caring for him will just get in touch.

So anyways I mentioned how tired I am…. last night Beau and I had a sleepover in the front lounge and he was high as it was takeaways for dinner. When I went to sleep I just totally died and like 2 hours later his pump and phone were blaring at me saying he was super high and had been high for too long and even though I was RIGHT BESIDE HIM on the mattress – I did not wake up. KW heard it from our bedroom at the complete other end of our (very long) house!!!!!!! Eeeeeeek.. I slept through him coming in and everything. No idea. Shit I feel terrible!!!!! I mean I totally can’t/couldn’t help it, but still. Feel very crap about it. Imagine if it was just me and it was a bad low!!!!!!!!!! FML.

Anyways he is a bit sick today with cold symptoms and not covid (after a weekend of horrific tests lol) so will just need to keep an eye on him.

Our Carer Support hours have been halved this year!! I am not sure if that is because he is now 6 or has had diabetes for 4 years but it means we get 14 days a year respite, not 28! Not that we ever used 28. Also, on that note – if anyone is keen to have the boys for us so we can spend some time together – please let me know!!!!!!!!!!

Better go and do some school work now, I love how I got to sneak this in in the day light hours!!!

 

 

Just warning you, this blog is really just for me. It’s not really Beau driven.. But this is my place to vent and write and get it all out. Weird I guess as I do publish it and perhaps this should be written in a diary of some kind.

Beau has just been sick – unsure of what with – likely a kinda tummy bug. After school on Friday he was super lethargic, not hungry, had a temp, not really moving, had a headache and had been quite low at school that day. This meant he missed the once a year disco at school!

Lucky, as then he vomited.  I have a vomit phobia and of course I was at home alone with him…

But we got through that and then came the sleepless night. I had a mattress on his floor and set up there for the night.

Because the new pump start was coming up, I have one of the diabetes nurses private numbers so lucky I could message her about what to do. Tummy bugs for diabetics are super problematic as their levels go low (no sugar) and their ketones (dangerous) can go high. To get ketones down – they need insulin. To give insulin – they can’t be low! A REAL MIND FUCK. Our nurse was very helpful and very encouraging that I could call the hospital any time to ask for advice/go in if needed.

It was a challenge balancing this but very luckily he was only sick for that one round.

I was also worried as he wasn’t peeing. Or eating/drinking.

Every single move he made or sound he made during the night I was up there with a bucket ready. Then I set my alarm for every 2 hours to check his levels and ketones.

So tired!!!!

In the morning he said he felt better, which was great! He didn’t eat though. And here we are 4 days later and he is still barely eating.

I somehow managed to balance his levels/ketones over the weekend. He was happy as by Sunday and desperate to go to school on Monday. He still wasn’t really eating much but full of energy so we sent him. I also reduced his basal rate by 70% meaning his hourly insulin rate was significantly reduced.

Unfortunately, of course, his teacher and main TA were away…

He had a couple of lows and in the end I picked him up an hour early as his nose was runny too.

Which brings us to today – where we can no longer do the pump start planned as his levels are so out of whack and his appetite still up the wop – so we can’t do it. Because in the trial, the pump and the sensor talk to each other with an algorithm specific to Beau and his insulin needs right now. Setting this up when his levels aren’t normal for him would be a very bad idea.

So he’s off school and now appears to have a cold. And pump start is set for NEXT Tuesday now. Which sucks as I was booked to relieve and really could have done with that money. But obviously this is much better for Beau.

Now we are sitting here, on the couch. Bodies touching the whole length of them, me typing this frantically and him watching some YouTube Minecraft crap running his fingers every so often through my birds nest hair.

Each night he has needed me – if not from the start of the night, then during the night he will come to me. Then he sleeps pretty much wrapped around me, hands in my hair. Of course I will be there and comfort him and support him always, but I am so very tired.

I have been trying to catch up from Friday nights lack of sleep but I am still feeling tired. Deep down tired.

There is something that strips your soul back when your child is sick. I have never been able to deal with it well, even pre-diabetes, pre-Beau, when Cooper was first sick.

My mind can’t think about other things. Nothing else. Every thought, action and ounce of my being goes to worrying, trying to help, feeling scared, feeling all about that and about nothing else. No one else. When you add diabetes into what was already an issue for me (and I guess, many Mums?) it makes it a thousand times worse. My brain has shut down to anything else. My (clean) washing pile is large. My hair is oily from Beau’s constant fingers in it – day and night. My heart is racing. I cannot think about work. I cannot think about chores. I cannot think about anything.

This is when I want to shut off from the world. Quit my job. Reduce contact with my friends. Stay away from public. Hunker down and be at home.

It is then I realise my mental health is maybe not going so well. I acknowledge this and think about the steps my ever-growing tool kit has given me.

Reach out, exercise, eat healthy (or not lol), connect with someone, read, mind-numbing TV, mindfulness, use my Kite app, get outside, buy stuff lol, make plans to look forward to.

Then it all seems too hard.

Today, it might be a walk outside with Rockypups.

Tomorrow, it’ll have to be going to work.

Thanks for reading, I’m fine – please don’t feel like you need to comment. It’s just me dealing with this during a tough minute.

Take care out there eh xx

Well, it came and it got Beau.

First.

It’s his day 7 today and I don’t think he’s really any better.

The good news is, that he coped really well with it and it was basically like a cold apart from the first morning that made me test him! He woke at 5 with a temp and a sore face, sore legs and sore arms and sore feet. I gave him pamol then he went back to sleep and I tested him on waking and sure enough, he was positive.

Turns out his bestie was positive that morning too, and a few other of their classmates.

What followed was days of a snotty nose and then he developed a croupy cough. Which then changed into a normal cough. And his levels were generally a bit higher until about Day 4 when they were very stubbornly high. Each day I bolused for food early and aggressively and had on an increased basal. Day 4 I still did this, but Beau’s BGL’s wouldn’t come down. The good thing is, he didn’t develop any ketones. Phew.

So here we are on Beau’s Day 7. I am on Day 3. Cooper is on Day 1. KW is still negative! So he is free tomorrow (to get coffeeeeeeeeeee and groceries lol)

I think (so far) we have been lucky as in, it’s been like a cold really. I have no smell or taste and a shit as cough with a headache and tiredness. As well as blocked/runny nose and blocked ears. But no sore body or fevers (yet!) so am feeling super lucky and I just hope it continues to be like that.

The no smell/taste is so weird! Eating is a very strange sensation – it feels like I am numb. Perhaps that’s the blocked ears too!

I am actually not sure if Beau will be well enough to go to school on Monday – fingers crossed he will! But if not, we will keep him home. I am not sure how I will even feel tomorrow – just gotta take each day as it comes right?!

So many others have Covid at the moment, or have had it. It’s been great to have some covid buddies to message each day checking in on how each other is doing/see what ‘treats’ could be in store in the coming days.

I am really grateful to our friends who have dropped off supplies/coffees/treats for us over the last week! We are so lucky and really appreciate it!

I am also feeling extremely lucky that we are in our new house to isolate! Thank goodness this didn’t get in the way of us moving into our new house and out of our rental!!!! We were in here for 1 week exactly before isolation (perfect timing!) and so that means today we have been in here for 2 weeks!

Getting covid now means that I missed a girls night away in Hanmer, and it means we couldn’t get one of our couches delivered (yes, we are isolating with no couches LOL) or our fridge door replaced yet!! But we did get our curtains installed! Our wonderful curtain lady’s whole family had it over a period of about a month and she didn’t so she was worried. I opened all the windows and doors and we all wore masks. Hopefully she’s ok still!! 😬😬

It also meant that poor KW had to have his birthday in lockdown where his wife and kids are not very organised lol oops but I did order him some beers, cooked him breaky in bed, we made him a cake and dinner!

I feel exhausted from being up and typing this lol so I’m about to give the kids the iPad and go and lie down on my bed.

Take care out there whānau! xx

Kia ora team, how are you all doing? Hope everyone is safe and well at the moment!!!

Things have been kinda ok lately, waiting to see what happens with Covid adds another level of stress and anxiety to everything else (like I’m sure many others are feeling too.)

I’ve recently had about a week of being up each night with Beau, treating lows mainly but some corrections too so am super tired and KW had to take the reins for a couple of nights so I could try to get a good sleep.

We (the boys and I) are having a sleepover tonight as KW is out so it’s back to being my turn again. I am exhausted!!!

Busy, full on week!

On top of ‘normal – day to day/night to night’ diabetes, covid concerns, every day life being a teacher and Mum/wife/friend daughter there’s been another layer of stuff to deal with.

Some things have occurred with Beau’s care at school, the same thing a few times, and, well…it’s scary.

Plain old fucking scary.

When things like this get added to my already full plate I can’t really deal with the normal things on my ‘normal’ plate as well.

I feel a million feelings, I try to be proactive and sort things, but I can’t focus on any ONE task and I feel stress and anxiety at a much higher level.

Then I wonder if I am cut out for this.

How can I live and breathe and feel safe when I can’t control this stuff. I can’t think about anything else ‘normal’ or concentrate, as when I think of my youngest baby not being ok my heart thuds and I am petrified.

Beau is fine. He has luckily been fine when these things have happened, but very easily, he might not have been.

He is amazing.

He is resilient.

He is strong.

He is brave.

He is funny.

He is fussy.

He is strong-minded.

He is savage.

He is kind.

He is empathetic.

He is hilarious.

He is clever.

He is gorgeous.

He is Beau.

In other news, last weekend we went camping with 3 other awesome families we have met since moving to Lincoln. We had such an awesome time!! It was also great as Beau was off with the kids JUST the same as everyone else. Running around, playing soccer, climbing trees, building bases, I mean – I don’t even know!! They were always reasonably close and the phone kept showing his levels and he was having a blast and (during the day) his levels were great!

This experience filled my bucket so much –  as we ALL LOVED it!

We loved hanging out with our friends and diabetes didn’t rule the weekend!!

Sometimes, it does sneak in though. This week I had to treat Beau with skittles while he was in the pool having his swimming lesson. He was very shy and didn’t want anyone to see which broke my heart. But he was heading down and he still had about half of his lesson left! Luckily he was all good. Thank you skittles!

Let’s hope next blog I’m feeling more joyful.

As always, send me strength and coffee please lol xx

 

 

 

 

Happy New Year!

Hope everyone has had a lovely break over the festive season, as a whānau we have had a wonderful time – christmas, then a holiday to Rakiura (Stewart Island) for 7 nights. Then hubby and I had an extra night away (in the city) to celebrate our 10th wedding anniversary!!

Busy, busy! So this week we have just been chilling around home and doing some wee things here and there.

Beau’s been having a super time, spending lots of time in Rakiura at the beach, which I’m pretty sure is his favourite place in the whole world!

I find beaching with the pump super stressful as he is in and out of the water all the time so I take it off and then either watch him sky rocket high with his BGLs or come down (which can happen with swimming hard out and other types of exercise) and then I don’t want any sand getting in his anchor on his back, or in his pump etc. lol SUCH. FUN!

There were a few hairy bits on holiday…

One – we went on a ’15 minute’ walk that was actually 4 hours return 😳😳😳

Luckily we had packed a few wee snacks for the kids, had Beau’s diabetes kit (with skittles and Glucagon) and even more luckily – he didn’t go low during the (really quite hard – with stairs, steep slopes and rough wee patches) hikoi!!

I was very nervous, so once we got to our destination, I fed the kids up (and kept some for later if needed) and didn’t bolus Beau – and was in quite a hurry to head back to where we started! What a journey – let me tell you!!!!!!!! We felt like the worst diabetes parents ever, where in fact we weren’t too unprepared. But we didn’t have a juice box or a lot of food. Argh, in fact even typing this is making my heart race again….

Another time, at a different beach, we had just popped down for the kids to have a wee swim and didn’t think we would be long. Beau’s levels were fine and…. we didn’t take the kit. Well, the boys were having the most amazing time and Beau’s levels on the phone were a steady arrow down, then 2 arrows heading down. ARGH panic. So I rushed off to the shop (that was closer) to get some skittles to shove down him. The lows can happen scarily quickly!!!! When I noticed, he was 8 something heading down – by the time I got back he was 4.4 heading down. This was all on the phone – no pricking as we didn’t have the means. Silly Mum and Dad.

These are the things we live and learn.

But again, luckily he was fine.

Here are some pics of Beau LOVING Rakiura..

 

So on our anniversary we had Beau’s diabetes clinic. We’ve had a really rough 3 month with his levels, lots of lows at the start and then pretty much constant highs. So we were expecting a bad clinic and HbA1c.

Obviously, Beau’s HbA1c had risen, but it was still very good. PHEW! And we just changed a few settings on the pump to see if that will help.. (SPOILER – IT HASN’T YET) and it was amazing to see that he has grown 6cm taller in 3 months!!! But not put on any weight. You should see his gorgeous long legs!

THEN for our anniversary, his amazing ex preschool teacher (and our friend) had the boys overnight!!! I was reasonably relaxed about it, as even though he hasn’t been at preschool for months, she has had the boys reasonably often and is one of the few people who REALLY understands Diabetes. And we trust her. So it was amazing. I slept with my phone on noise, in case. And we just went to town, so we were able to go to Beau if needed. And we didn’t need to. 23 hours childfree time – bliss!!! Although a few hours before we went to pick them up, there was no readings on the phone. She had tried all her tricks then let me know. I called her and we tried mine. Nothing. So she just pricked for a while and his levels were great. When I picked him up I realised that his sensor had come off. It totally didn’t look like it though!!! I reckon the boys must had accidentally played rough and it came out but they just put it back pretending nothing had happened lol.

Anyways. Today Beau’s levels were climbing all day, I was bolusing correctly, and correcting the whole day, even over correcting slightly. ARGH nothing worked. And sometimes what happens is that his behaviour can be affected by his levels and tonight, it was. It really was. He was being sooooo naughty!!!! With ZERO fucks to give. Crazy boy!!!!!!!!! I was starting to lose my patience so in the end he went to bed and I snuggled him and he fell asleep reasonably easily. And then I did a sleeping site change, which was good as the clever brave boy didn’t even flinch.

I am aware that next week kids can get their vaccines, and obviously with Beau having T1D I am super keen for them to get it. I asked the Dr at clinic (not a usual endocrinologist, just a registrar) she didn’t know and suggested I ring out GP.

So I called the GP. They didn’t know anything, so suggested I call the pharmacy that is doing them in Rolleston.

They didn’t know anything and suggested I call a Dr on Lincoln Road.

Well I got sick of being on hold at that point so did not.

But, is there going to be a roll out for children who are higher risk etc? Or is it all at once? And where can I get them done? And can I get my booster then too? Where do I go for that? Why is this so hard now? When we got our first ones, there were vaccine clinics everywhere!

Anyways, here’s a pic of my handsome boy tonight snuggling his latest purchase from his Christmas money – ‘Pinky Pink.’ (In size 4 pjs he refuses to let me give away and continues to keep wearing…😍)

Kia ora!!!

I write this from my bed with chocolate and a cup of tea after a busy whānau day with my boys celebrating Beau Richie’s Diaversary.

3 years ago today, our baby was diagnosed with T1D. Therefore his, and our, lives changed forever.

Each year we celebrate  Beau on a day where he can choose what we do and where we go and what we eat. It gives him some ownership of an otherwise out of his control world…

Today he planned – Timezone in the morning, then 2 mince savouries for morning tea/lunch, Santa photo in town ( I might have added that in there and booked and paid for it) and then out to see Nana, a trip to the beach and McDonalds for dinner.

So that’s what we did! He had a great day, he loved all of it. He also got a unicorn egg that you soak in water and will soon hatch out a unicorn and some coloured rocks from Hettie’s Chrystal Shop in town. A very lucky boy!!!

He fell asleep on our way home from Nana’s! And went to sleep before 8pm for the first time in forever.

It’s such a special time. We were lucky to all get the day off to celebrate, but if we can’t – we just push it to the closest weekend day.

I find it hard to believe that Beau has had Diabetes for over half of his life now! For more of his life than not having it. Fucking sucks. From now on, his 2.5 years on this earth without Diabetes will seem less and less.

It’s amazing how much he has grown lately. He’s now been at school all up for about 10 weeks. He is doing SO WELL!

I’m super proud and also blown away! He doesn’t cry on drop off now, he’s made two new wee besties – one a wee girl and one a wee boy. The 3 of them are very tight! Cuuuuuute!!!!!!! He is also really thriving in his learning!! I’ve always known he’s been very clever, but I didn’t really think he was ready for any academics at school. I was wrong. He is so into his learning, trying really hard and picking things up!! He brings reading books home now and is using decodable texts and he loves sounding out words around the place too! He can write all of our names and, well, his maths is super good!

His motor skills are still a work in progress – but I mean he is my son, and mine aren’t great!!

Beau’s care at school is going really well too, we are really happy with how he’s being cared for there and the open communication etc.

I just feel happy.

Maybe it’s the end of year looming. Maybe it’s 7.5 days of work left. Maybe it’s that Beau is settled and happy. Maybe it’s that Cooper’s anxiety has majorly calmed down and his treatment has stopped and he’s happy.

A friend said to me the other day, you’re only as happy as your least happy child – boy, that’s the truth!!!!

Maybe that’s why I am happy, because my kids are.

I know life has ups and downs, for everyone, at different times, in different ways.

I haven’t felt this happy in a very long time. I wasn’t going to write about it, but I moan when I am not feeling great, so we might as well celebrate when I do lol!

And when I read how happy my kids are – I know that’s why!

Also, my KW and I are ALMOST at our 10 year wedding anniversary (in just over a month) and I am so proud of us. I love him so much. No easy feat these days with ups and downs and my mental illness, a child’s illness, other child’s mental wellbeing, working, every day chores, annoyances, you get the idea.

So again, we celebrate the good stuff. I will always complain about the crap stuff.

Thanks for listening, reading etc. Bed time now!

Timezone!

Family pics at Timezone!

After we saw Santa!

So proud of Beau’s independent writing

He loves the beach!

Here I am, unusual hour to blog for me (4am) but what is sleep?!

I am so heartbroken for Beau. How unfair he has this, lying fast asleep in the night with his Mum putting a straw in his mouth so he can drink juice to survive. This, of course(!) was after I’ve been awake half of the night trying to bring down a huge high that I caused, giving him McDonalds for dinner.

Usually I have the McDonalds bolus right but I waited to give him the full amount (it’s a lot of insulin!) as he went low after eating it and my original bolus. Anyways I was supposed to give him the rest (only 15g of carbs) later, but we went to bed and he was a steady 8.

Well, he went to about 20 and then after a couple of corrections went down to 2.5. Needing 2 treatments to get back up. Hence why I am here. at 4am.

I have been meaning to blog all holidays but it’s been a busy time!

Beau started school 2 weeks before the holidays! It’s going so well! I am so happy with how the transition has gone and his wee team around him!
We worked really hard to make it go as well as it could and I’m proud of us and I’m super grateful for his school and the wonderful people caring for him each day.

I did ask them if they would possibly fund an extra half hour per day and they (at the moment at least!!) have funded an extra hour a day! So we are so very lucky!!!!

It’s taken Beau a while to settle in, of course he knew no one from preschool or anything, not to mention often having adults around him! And being super thoughtful taking it all in. There have been tears on drop off each day but we know that he is fine just after and that’s the main thing! He has made a wee friend now, which has made it that much better!!!

There have been a few blips with things at school (in relation to diabetes), and there are bound to be more, but we are working in really open communication so I am really happy and obviously always there to help.

We had clinic on the last Friday of term – our favourite endocrinologist and nurses – yuussss!

Beau’s HbA1c had improved since last time, and is in the ALMOST non-diabetic range, so that was amazing news!!!!!! We are so proud of him. And of us. Nothing needed changed in his pump settings so that was great! The team there are so wonderful, they really celebrate us and Beau and tell us how hard we are working and how great it is. It is so nice to hear that and gives us a boost as always, it’s nice to hear kind things but also – this is our son’s life!!!!

The last few weeks have been a bit tiring, I’m not sure really what’s going on. Earlier this week, Beau had 5 lows in less than 20 hours. Which isn’t like him. In fact, one was during the day and he was quite unwell with it, Crying and saying he wanted to go home (we were on our way home) and saying he felt sick. He sat with a bucket for quite a while but thankfully came back ok. The phone hadn’t alarmed me and he’d eaten and been bolused and I was driving so had absolutely no clue he would be low!!

The lows overnight recently have also been mostly requiring a double treatment, this is exhausting as you have to stay awake to recheck him again each time, so it’s like usually more than 45 mins I’m awake for.

I get so fucking heartbroken, like just then. He’s just so beautiful. I am so angry he will be dealing with this for the rest of his life. I know I’ve said it before, but I am glad to take the burden away for the few years that I can for him. But in 15 years, he will have to sort out his own lows in the night (hopefully by then he will be hypo aware!!) and also HOPEFULLY the technology will have caught up to prevent lows. Or high highs like this last few hours have been. This is why this handsome young boy needs a queen bed, for his Mummy and him 💙

Our next pump step (in about 18 months) should hopefully be able to be a closed loop system with the same pump brand he uses now. This will mean we need to pay more money for a CGM for Beau to wear and that will talk to the pump and reduce the insulin when he is heading low, and put more insulin in to his body when he is heading high!!!!

I can’t wait!!! Hopefully we might get on a trial for it too!

Also, the news any parent of a child with any medical issues likes to receive – URGENT pump recall! Argh! But it’s not urgent as Beau’s is still working ok but we will be sending it back for a replacement as it has a faulty part. Bloody petrifying to get that email when travelling last week!

He’s awake now, crying for me – better go xxx

I still can’t get over the prescription sizes!

Our GORGEOUS boys on Beau’s first day of kura!

Isn’t he the most beautiful thing you’ve ever seen?!

 

Ok. Breathe.

We are here.

The BIG Week.

I HAVE TO BLOG. I have work to do, diabetes management paperwork to do, washing to fold, baking I really should have done/wanted to do.

This week coming for Beau has ended up looking different than we had originally planned it. So here’s a brief rundown.

As soon as we were at Level 2, a lovely Diabetes nurse who has been on maternity leave, and our amazing pump rep went to school and trained a number of the staff at the boy’s school. This meant that Beau could start this week coming, so he had a visit with KW on Friday, and he has 2 days left of preschool tomorrow and Tuesday, I have a visit till 1.30 with him on Wednesday and then THURSDAY IS HIS FIRST DAY.

Breathe.

So, the training went well. Amazingly, that night, the principal rung me to tell me how well it went and how lovely the nurse and pump rep had been, how it was really helpful for them to realise a bit more of what we manage as parents of our wee Beau the Brave and not only is it tricky for anyone leaving their tiny wee 5 year old with the school – they now understand a bit more of how much huger it is for peeps like us.

What I loved about this was the kindness it showed and the validation of us as parents, our hard work, our (MY) anxiety about this huge transition.

It got better – the next day, the lovely nurse called me. She wanted to tell me how amazing the school was! How supportive they were, how much they wanted this to go well for Beau. How many questions they had, so they could be prepared for the million and six things that could happen in any one day! She said we couldn’t have chosen a better school, a better fit for us.

I actually had a great week last week, those 2 calls made my week though.

Soooooo.

Breathe.

Tomorrow. Step 1 – farewell preschool!

Arghhhhh. We’ve been there for almost 8 years. We started when Cooper was 9 months old!!! And there are NO MORE BABIES for us. So that’s it. Waaaah.

And Level 2 makes things pretty shit, pretty rigid and pretty quick. Probs good, but awful that KW and Coops can’t come to Beau’s farewell.

Beau is having his farewell on Monday, but still going on Tuesday lol this is because his favourite teacher doesn’t work Tuesdays and also his farewell is a joint one – with his bestie!

Breathe.

So step 2. Tuesday. Go to preschool as normal, (after being farewelled) and never go back! 😱

Step 3. Full day school visit on Wednesday, well pretty much, with me. Till 1.30. KW and I will train the TA’s during the day with the phone etc and my wee booklet I created (with a giant help from my fellow T1D Mumma friend!) and then after school KW and I will train the teachers in the junior school on the same thing.

Step 4. Thursday. DAY ONE OF SCHOOL FOR BEAU RICHIE.

Step 5. Scream, cry, celebrate, I have no clue lollllllll

Breathe.

I am not ready, but I am.

We have had to take so many steps (and had a few pauses!) to get to this point I just want it to happen now lol.

Beau says he doesn’t love school. Says the visits are ‘bad’ and that he doesn’t want to go.

I know (read – THINK. HOPE.) that he’ll be ok. He’ll be great. He will eventually love it. Or maybe just like it.

At least my babies will be together.

And no more town drop offs for KW 3 times a week.

You should see his uniform. It’s soooo teeny tiny!

I haven’t had him in the whole thing yet, I am saving that for Thursday.

A very, very special day for our whānau.

(Note, in this picture  I have put up with this post, it shows me bolusing Beau on his pump during our family photo shoot in June. I love that there is a non-invasive cool picture of a true snapshot into our lives!!)

You know how there are certain sounds you hear regularly throughout your life,  just like certain smells, or tastes that evoke feelings?

Recently, I’ve been really noticing all of the sounds related to Beau’s diabetes and I’ve been itching to write them down.

It all started one night, when through the (new house, thin walls) I heard the POP of the testing strip container’s lid coming into our bedroom while KW was in the boy’s room obviously going to fingerprick Beau in the middle of the night. That pop woke me up.

(Now, please forgive me, I am not sure how this blog is going to end up, I am NOT a writer and onomatopoeia is not my strong point!!!!)

As well as the pop of the lid, there’s the beep when the strip is loaded in the reader.

Then there’s the push down of the finger pricker.

Followed by the click of the needle of the pricker being shot out fast and into Beau’s skin.

Then the beep beep beep of his BGL reading being shown on the reader screen.

All of these sounds are made anytime of the day or night…

There is the alarm on Beau’s follower phone alerting us to his low or high BGLs.

Then, there’s the alarm on Kodie’s phone (with a different sound) alerting him to Beau’s low or high BGLs.

Then there’s the alerting music on my Nightscout app if I leave it open if Beau is low or high.

There’s the opening of the fridge to get out the juice box.

The ripping of the plastic straw packet off.

The push-through of the sharp end of the straw into the juice box.

The sleep-slurping of juice.

The sound of juice gurgling down into Beau’s tummy at whatever hour of the morning.

The rip open of a foil ketone strip packet.

The pump beeping when it is site change reminder time.

The rewinding sound of the pump.

The sound of insulin filling the tubing.

The beeping at each step of the way when setting up the pump every 3 days.

The tearing of the alcohol wipe packet.

The characters in chosen cartoons used as a distraction.

Sometimes, I can even hear the insertion of the needle.

The button pressing of a bolus, multiple times to get the steps completed before insulin enters the tubing.

You know what I mean? So many sounds. So many steps.

I’ll also just put a wee update here at the bottom.

I’m currently feeling quite uneasy as we are in Level 4 here in NZ and soon to go to Level 3 (next week hopefully) – I am much more scared of this Delta variant, for all of us in NZ but for Beau.

So, while I am loving us all being safe at home together, and Cooper and Beau are both LOVING it living their best lives at home with us here. There are a lot of other things to consider…

Cooper’s appointment has now been missed so will have to be caught up so we can get a treatment programme underway for him with the psychologist.

I am all up in the air about what is going to happen with Beau starting school. So all going normally (as in no Covid/lockdown etc) he would be having his last 2 weeks of preschool next week and the week after before starting school. Today, the whole staff at his school would have had a teacher only day and had the training from the Diabetes team and pump rep. Of course that didn’t happen.

So… Level 3 next week… when will Level 2 be?

Does that mean there is just no more preschool? Like, ever again???

Does that mean his school won’t be trained in time for him to start but there also won’t be his space available at preschool?

I have organised a few days off (for when he starts school) and KW works mostly from home, so maybe he could start and we will just need to be there taking turns with his care until the staff get the training?

But then will my class be starting back at that time and need me?

But I will always put Beau first so I’ll need to be with him?

But WHEN WILL THIS BE?! lol

Ok, so that is all my huge brain dump. You’re welcome.

Stay safe whānau xx

We added more to this after this pic, but Beau was LOVING it – how cute is he?!

He is a maths brain and I tested him on his alphabet knowledge with magnetic letters, which he then quickly sorted into colours. I just loved the photo of him!

Cool dude walking RockyPups in lockdown.

Hello again, it’s been a couple of months now. Things have been full on.. and not in a good way. Look, this is a heavy blog and I’m not going to go into all the detail but it’s a snapshot of life right now for us.

Since last time, Beau has had his bloods taken and they have all come back clear yay! His HbA1c has also not really changed, just up ever so slightly which was so much more amazing than what we were expecting – double yay!

We changed quite a few of Beau’s ratios at clinic and he has mostly been a lot better, although at preschool they are having trouble as while there he seems to be hovering on the lower side… so I might need to change the basal rate while he’s there, as apparently ‘He plays hard!’ lol – that’s my boy!

We are getting closer to his school start date, 34 days in fact!!!!

I was ok about it, but no longer am I! I know they will be ok – it’s just so hard to trust a whole lot of new people with my baby’s life!

Preschool manage it all soooo well that I barely check Beau’s levels on my phone now, I just have my phone on me, with sound on, so I can answer calls/messages with questions or concerns. Which still happens regularly and I even had 2 calls today with something come up on the pump that we have never seen or had to deal with before!!!! Lucky I could talk his amazing teacher through it and didn’t have to go and get him! (which also would have been fine!)

I am so lucky to have a supportive work place that knows that if I need to go, I’m gone etc. I’m very much a family first person, as I would hope most people are. I am very privileged to work somewhere that shares the same values as me.

So, we have got the teacher aide hours allowed for Beau’s care – 15 hours a week, so 3 hours a day. It doesn’t feel like much, but apparently that is the maximum children can get for High Health Needs Funding!

My fave Diabetes nurse and pump rep are going to school later this month to train the staff on the basics of Diabetes. So huge. It is overwhelming…..

Also overwhelming, life…

Things have been really hard these past couple of months for us all, our big boy has developed pretty severe anxiety, seemingly out of nowhere. First appearing as physical symptoms, then after blood tests, stool samples etc and waiting and talking more, it turns out it was the mental symptoms causing the physical ones.

It has been awful to experience as a parent – the meltdowns,  the anger, the feelings, the words and threats, the ‘wishes’, the sadness, the tears, the fights, the avoidance, the excuses, the screaming, the physical symptoms, the sheer helplessness of us, but also him. At his wits end, at our wits end.

There have been some dire and dark moments and my heart has been broken. There has been lots of school missed, many different opportunities not taken, rugby trainings and games missed and, well, life has really been at a standstill.

I think we might just, maybe, almost be getting somewhere, making some gains after a lot of work from our wee Team Wixon and some incredible advice from some of my nearest and dearest.

As one of my friends said today ‘You are out of crisis mode and now in survival mode’ as in – things have improved, but they aren’t sorted.

Now KW and I don’t have to stay in class until 9.20am if we drop him, we can leave before the bell. I was able to parent help on his school trip yesterday, which meant he went! He has played two (awesome!!!!) games of rugby in a row! He made 4 days of school last week! And 2 out of 2 so far this week!

His school have been next level amazing! I feel so lucky to be there and know that Coops is in such good hands, and that gives me hope that Beau will be too when he starts.

We have our first psychologist appointment tomorrow so I am looking forward to moving forward and getting our boy the help and strategies he (and we) need to get through this tricky time.

I’m sure this is possibly more common that I (or people) realise but even I (an anxiety/depression sufferer, and a teacher of some quite high needs children over the past 14 years) am surprised about how debilitating it’s been, for my big boy and also our whānau.

We have started a new thing at dinner, we used to share our ‘best bits’ of the day, but now we go round and share what we are grateful for. Tonight, everyone (including Nana) had quite a lot to share and say. That makes my heart smile.

I’m grateful for my amazing husband.

I’m grateful for my whānau.

I’m grateful for wise friends.

I’m grateful for a supportive workplace.

I’m grateful for having pets to snuggle.

I’m grateful for chocolate.

I’m grateful for the magical potion that is coffee.

I’m grateful for my beautiful babies.

Look at them!!!!!

My Team Wixon ❤️