The past few weeks have been a struggle, things have been hard & I feel like I’ve been hit by a tonne of bricks but like any lioness my cubs are the most important thing in my life & I will do everything in my power to protect, nurture & provide the best for them, they might be 13 & 2 but they are still my babies.
Working from home provides great benefits when you have kids, being able to work around them, choosing your own hours etc but sometimes it’s not always as wonderful as it might sound. There’s a lot that goes into being self-employed, you only get out what you put in and as I’m a cake decorator it’s very time consuming, and obviously cakes have to be ready for a particular date & time. There’s no changing deadlines when it’s someone’s wedding cake, I feel under constant pressure in all aspects of my life, then throw in the fact I have depression & anxiety and you may understand why seriously struggling with the pressure of everything.
When Archie was younger it did fit around our lives pretty perfect, I’d bake early in the week when Archie was napping then decorate the cakes in the evening and the two afternoons he was at nursery but as he’s got older & his autistic tendencies have gotten worse it’s been getting harder & harder to work. He now needs 100% supervision, yesterday I was in the kitchen washing up, Archie in the lounge with only an archway & a babygate separating us yet he still managed to wedge himself between the back of the couch & the wall by his neck, I dread to think how serious this could have been. He has absolutely no concept of any kind of danger, nor does he understand or communicate in any way as he’s completely non-verbal so I can’t explain to him why he has to be careful. If a couple of minutes washing up can cause such an incident could you imagine trying to get cakes in the oven? It’s just not happening. I’ve had to abandon all hopes of trying to get any work done during the day as I struggle to even do the housework without him being a danger to himself.
I’ve tried working in the evening, and again this didn’t used to be a problem, as a baby he slept better than he does now, going to bed around 6:30pm. Even though he used to wake excessively in the night I had a couple of hours to work before finishing around 9:30pm for a little bit of me time before bed. He now goes to bed at 8pm and wakes more than he ever did as a newborn, if he’s up five times a night then that’s an amazing night More often than not I’m downstairs with him between 1am & 4am before he finally starts getting tired enough to go back to bed for a couple of hours. Looking after him all day then working until 11pm, then managing about fours hours sleep a night just isn’t working for any of us. He does go to nursery for ten hours a week which is when I do actually manage to get some work done but it’s just not enough time. We can’t afford for him to go any extra as this would mean I’d need to work more hours just to be able to pay for it, which just defeats the object. If I reduce my hours then we can’t afford to send him at all.
I’m not able to fully fulfil any role, my business is suffering but more importantly my family is. So I’ve made the decision that I’m going to really scale back my business, I’m not ready to give up work 100% as when Archie starts school I may be able to continue with my passion for cakes but I’m only going to take minimal orders, perhaps enough to keep my regular customers so I don’t lose my business altogether, then I can just work a few hours in the evenings whilst still having time to spend with my teenager & hubby and actually have some time to switch off from everything.
I know this post sounds negative as I’ve been outlining all the issues but it’s going to have a positive outcome, I’m going to be able to be a better mum to my boys. Brandon needs his mum to support him with his school work as he has his GCSE’s coming up in the next couple of years. And Archie needs my full focus to help him with his development, all his various therapies & appointments and to just be there for him without being like a zombie. It’s going to hit us hard financially so we’re going to have to scale back on luxuries & forget about moving to a bigger house but my boys will have their mum and Archie will have the care that he needs.
Have you had to consider giving up work to care for a disabled child? I’d love to hear from you, any advice is appreciated.