Yellow Azalea

Friday 3 April – Day 9

Today was another beautiful sunny day and so I decided to go for a little jog. Managed 20 minutes at a very slow pace, but happy with that. Was really looking forward to getting started on the Virtual Crop today through Scrapping Clearly in Australia. But it took me until mid to late afternoon to get inside my scraproom. Phil’s work ran on later than he hoped, so it was not to be. There is a lot of compromise in this lockdown.

I’m sure it is like this for many families and friends sharing our abodes at this time. Even though I am an extrovert I love my time alone in the house when the kids have gone to school and Phil has gone to work. So, in this respect I am finding getting my own space a little restricting. We also have a carer present during the day sometimes, so while this is beneficial, it is contributes to that feeling of not having your own ‘space’.

I am totally grateful that we have carers to help, and although it can feel overwhelming having people in the house most of the time, it is necessary. The alternative is to have one of us fully engaged in Mitchell’s 24/7 supervision. Explaining this is difficult, but you can’t just leave him to his own devices and go and read a book, or scrapbook or whatever you fancy. You could, but what you face on your return could be interesting. Even popping off to the toilet or taking a phone call, turning your back for a few minutes to hang out the washing, and you come back and there he is sitting with a tub of bum cream, that has been emptied and smeared. It’s not always like this, there are times when you can successfully sit and type (like I am doing now) as he sleeps, or watches Wallace and Gromit, but you’re always on alert.

It’s much better than we he had a tracheostomy. At least it is not the risk of a life versus death situation. Mitchell had his tracheostomy (trache) tube for breathing for a little over 12 years, and an open stoma for 10 months after decannulation (the removal of the trache). During this time, instead of breathing through his upper airways (nose/mouth), his breathing was done via the trachea and the trache tube. I had no prior knowledge of what having a trache meant until it became our reality back in 2005, 14 months after failing to breathe on his own and multiple intubations. What it meant for us, was that being hyper vigilant was a necessity if we wanted to ensure he stayed alive. I’m not exaggerating here – you literally have moments to clear the tube if it gets blocked or comes out, before it becomes a life/death situation.

This has always meant for us, that if we were to leave a carer (we were not provided with trained trache nurses at home) with Mitchell, we had to be confident, that they could handle and take on the responsibility of clearing or getting that tube back in place. This is a big ask, and it is one of the reasons we have lived on edge for so many years. For many people this responsibility is to much to ask, and for this reason, we only ever trusted a handful of our carers to care for Mitchell sole charge. Sure, we had offers of help from well-meaning friends and family, but can you really ask that much of them, when even nurses without trache training would not take on the responsibility?

Why, therefore am I talking about this now, under a post about lockdown? Well, sometimes, I don’t feel that this time is that different to how we lived when Mitchell had a trache. We had to avoid public spaces due to risk of infection, we couldn’t always go out when we wanted, and we were constantly ‘washing our hands’. Our social life, my ability to work and the potential to travel has been restricted for years. Sure, this is totally different, and the fear of bringing home Corona virus is anxiety producing, but our home life is set up to be entertaining. We have multiple board games, TV, DVDs, internet and game access, I have a fully stocked craft room, we have a spa pool and a rebounder and a fully stocked fridge and pantry. I’m missing a night or two off cooking and the odd takeaway, and the freedom to go for a drive, but I have got my family here with me and I can still talk to my Mum and friends on the phone. And I’m missing that space I talked about earlier. Plus the freedom. And golf.

But the one in our family who is missing out the most at the moment would be Holly – she loves school, so staying home is a penalty. And while there are opportunities of connection through technology that’s not 100% her style, and you miss out on those ‘incidental’ connections, that are really important in adolescence. Having the courage to be the one who makes the call, or send the text, or makes an invite that’s tough as an adult, let alone in those impressionable years. Even now, with all my years of experience there are days and moments when I second guess friendships. And it is much harder when you are 16.

I really hope people continue to take this seriously enough that the spread slows and we can resume some normality.

Saturday 4 April – Day 10

Another weekend, that doesn’t feel like a weekend. Georgia is working today, so we have help, but knowing that there is no carer on Sunday and Monday, I am trying my best to look after myself today.

Watched a few of the live sessions on Scrapping Clearly, and they are very inspirational, but then I started watching one that was about scrapping holidays and it was showing pictures of all the places we were ‘meant’ to be going – Cinque Terre, Pompeii, Santorini – I couldn’t help but feel envy. I know that it will all still be there, but part of me can’t help feeling a big let down and wondering when that opportunity will happen again. Now the economy is taking such a nose dive, and there is uncertainty around work, both achievement of the bonuses needed and security of my hours and the extra hours I had been counting on. I know we can’t live in the ifs, whens and buts, but it stinks. Plus, I detest the saying ‘everything happens for a reason’, when crapola like this happens.

It’s like the world is spinning on its axis, but it’s telling us through weather, climate change, and now viruses that we need to slow down.

Started reading ‘Authentic’ by Professor Stephen Joseph and already I am starting to think I should change my OLW for 2020. I only just committed to paying for the class last week, so haven’t really done any inner work on RECORD – except my very long deliberation on an earlier blog post. But, with what is happening, and no trip happening, I am not feeling connected to ‘record’, so perhaps it’s not too late to change to ‘Authentic’. Should have plenty of time for navel gazing, so probably no more perfect timing.

Did another run today and managed 25 minutes without a stop. Helped me lift my mood, as still feeling a bit lethargic and demotivated. Completed a pocket page about our Northland holiday, but otherwise still haven’t created any masterpieces.

Have offered to do a sober lockdown story for Living sober, and how I am dealing with sobriety in the lockdown. So will possibly share here – if it gets published.

Today I am grateful for time to think and reflect.

Take care out there and wash your hands

Cherie xx