Yellow Azalea

DAY 1 OF 100 – Thursday 2 March 2023 – 06:30 am

Call me crazy to take on one more project this year – but I have decided that I will try to write/blog for 100 days starting today. I already have too many creative projects on the go – Wanderlust, One Little Word and Get Messy The past two months I have hardly been able to keep up with these, but there are some pretty solid reasons behind that:

1. We sold our home mid January, settled on 20 February and shifted into a new place in Karaka. My creative space looks like a storage room.
2. Holly shifted out of home into an apartment in the city. Taking some adjustment time there.
3. We have only one fulltime carer to help support us with Mitchell and have been working a minimum of 3 nights each week on top of the normal routines. I can’t magic up caregivers to resolve our short staffing, but I am taking steps to sort this out and we have gone ahead with running some ads via Flying Kites. I really hope we can find at least one or two good people from this recruitment attempt.
4. New Zealand’s weather patterns have had a disruptive effect, with flooding in Auckland, and cyclone Gabrielle, which although both did not affect us directly, caused schools to close for several days disrupting the beginning of the school year and meaning Mitchell was at home 24/7.
5. I worked right through Christmas and the school holidays and am basically just feeling really, really fatigued.
6. I have been working on a project related to respite and have been busy with ideas to do with the Complex Care Group.
7. Every respite time we have had has been renovating, packing and shifting.
8. I have had disrupted sleep patterns, resulting in emotional eating and weight gain which just makes me more tired.

There is a lot to catch up on, but today – for the first time this year, I am off to play golf at Waiuku for the pennants competition.

DAY 2 OF 100 – Friday 3 March 2023 – 07:07 am

I headed out to Waiuku yesterday for golf feeling apprehensive that because I had not been playing and that I was tired, that I would let the team down. Unbelievably, it was quite the opposite. I shot 89, my best score ever!!! I won my match 11 1/2 to 6 1/2 and it felt really good. Isn’t it weird how you can pull one out of the box like that. This was my first time ever with a score under 90. 🙂

After golf, I got home and found out that once again Mitch hadn’t made it to school but slept all day. This is the 3rd day in a row that he has slept right through until 3 pm. We can’t seem to break the habit and of course, this is limiting our ability to get anything else done, as one of us needs to be here to supervise.

I was pretty stuffed after golf, Waiuku is reasonably hilly and as I only had myself to cook for, ended up making average choices for dinner, having leftover Tonkatsu on some pide bread – with no greens. My 2 fresh dates that I am trying to have a sweet treat turned into about 10, so I think I blew the sugar content for the day. However, if I give myself grace my eating patterns have included a lot more vege this week, just by eating less processed food. With Dr Libby’s course, it has made me really aware of how much hidden sugar is in food, that I think of as healthy. Perhaps the most insightful daily video so far, was one titled “I don’t eat that badly”. This is so me, I often question the why do I keep gaining weight when I make what I think of as healthy choices – but with looking at the sugar content in everything (including my favourite probiotic yoghurt), I realise I have not been eating as healthy as I thought. And there is another point, instead of describing your food as healthy/unhealthy, good/bad, she uses the adjective of nutritious. Ask yourself, whether what you are eating is nutritious – the aim of food is to give your body the nutrients and fuel to survive. It’s a great approach. But it is still bloody hard dropping what I have created as a sugar habit, mid afternoon and evening when I reach for a sweet treat to keep me going. But Rome was not built in a day.

On an entirely different track – I have been working on a project related to respite and have started up a spreadsheet to analyse the outcomes from the implementation roadmap from 2017-2022. It’s pretty eyeopening on how little has been put into practice. I hope I will get the chance to meet with a team from government about this with the ODI group. There is a lot of confusion out their for users of Individualised Funding and as a parent it is not really ‘my problem’ to solve, but I find some satisfaction in trying to make change – in the hope that things will improve. We only have 18 months before Mitchell will no longer have a respite option and I am desperate to find other ways to continue to have these breaks that we need.

It seems like my blog is a lot about disability these days, but at the end of the day, the purpose of my blog is self care via journaling and memory keeping – and writing about what is going on in my life is this too.

Mitchell and I took a wee walk around the neighbourhood. We have a nice walking area out the back of our house and are trying to make the most of it.

Now deciding whether I should publish my pages daily or just wait until the end of the week? Oh well, I don’t think it matters as often I think I am just writing for me and to get my emotions and thoughts out of my head. Maybe just as I feel appropriate – why do I have to have a rule?

That is it for today.

DAY 3 of 100 – Saturday 4 March 2023 – 10:57 am

Yesterday we had CB over for a visit and dinner. Made yummy Quesadillas with mince and beans. Pretty tasty and had a nice green salad with it. CB bought her puppy over, and we took her and Mitchell out for a little walk. Felt good to be out in the sun. Was a nice night and Mitchell really enjoyed seeing her.

Made a little more progress on the house, with putting a couple more boxes of stuff away. Unpacked some boxes that were in storage forever, and saw all our old Hard Rock Cafe glasses that were collected over the years, plus found a box of ‘nautical’ ornaments from Waiheke. Brings back memories to see items that were such treasures at one time. This house has lots of storage, so it is going to be nice to be able to use some of the things we have had put away. Still need to sort a fair bit more stuff – but that is the process of shifting and moving. It takes time.

Feeling relieved that my extra leave for this weekend got approved – I really needed some down time as it has been hectic for ages. We had Sherlie working the last 2 nights so have also managed to get some sleep. Almost feel like a human today. After 5 days straight without any support workers it was a much needed change.

Some good news yesterday too. We decided that we need to make a holiday for Phil and I happen this year and approached Wilson Centre for some dates for Mitchell in June, and they said YES! Let the planning begin!

Yesterday, I started reformulating that maybe ‘the book I want to write’ is less a memoir and more a book with tips and strategies on raising a complex child and how to take care of yourself in this situation. Not that I always do this right myself, but I am learning all the time and continue to try out different ways to manage the levels of stress we cope with. Writing it out is one of them. My head is always busy with ideas around this and it comes and goes. I really would like 2023 to be the year I make this happen.

Cherie x