What’s been happening for me…

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 ❤️