In the summer I was offered some paid work alongside my voluntary work. I initially said no.
Life was too unpredictable to hold down a job.
I was struggling with everyday life as it was, due to exhaustion, sleepless nights and the demands of the complex medical world, It just didn’t make sense.
However I had wanted to go back to work at some point, to regain independence and also contribute to the family finances.
With the idea that this was just a trial, I changed my mind and decided to give it a go.
My confidence and general faith in myself was visibly low, but the people around me gave me a push and sent some positivity my way to get me started.
I remember feeling so lost, as I tried to remember how to put my working head on.
Separating my home life with work life was pretty much impossible. For a start, Zachariah was, and still is, very demanding, and needs to remain priority.
But also, because my work linked directly to Zachariah, as we are an organisation who advocate for families like mine.
The beauty of this, was I had some understanding coming into it, I had our story, and our experiences.
What I did not have, was admin experience. That would have to be a new journey to dive into it.
With a little helping hand from the technology wizard, aka, my Husband, I managed to do the basics of the job, and my skills are developing nicely.
I'd love to tell you that it's all going well, but reality is, I'm a crap employee!
I miss things!
I get called away in emergencies!
It was only Monday last week (28th Jan) that I had to grab my things and run to my car and head to school to an epilepsy emergency.
In that moment all I can think about is what state Zachariah is going to be in once I arrive.
Will he still be with us? Sounds dramatic to those who do not experience seizures, but when you live alongside such a nasty thief, you really do get to know your enemy.
The job is literally the last thing on my mind, which is what makes me an awful employee, but instead a caring mother.
My son comes first and always will.
This emergency led to a day off on the Tuesday as he couldn’t go into school. The guilt of leaving my boss to do our busiest day of the week was huge, I felt awful.
This then created an anxiety attack this morning (Monday 4th Feb).
Whilst driving Zachariah to school, I felt this huge knot build up in my throat, I began to shake, and my breathing got heavy!
Trying to hold it together as I needed to get us there safely I focused on everything but the huge attack I was experiencing.
I didn’t understand why!
Panic attacks usually are a result of worry, stress or anxiety. I felt OK?
As I arrived at school I saw Zachariah’s VI teacher, we chatted, and it all started to unravel.. I was anxious about leaving Zachariah at school.
I was worried about his quality of life.
I wondered whether work was worth it, should I not just keep my boy at home? Mondays are always the bad news day, the day I receive the phone call, so why bother sending him in?
My day didn't improve... The more people asked if I was OK, the more I felt not OK!
This affected my work. I told my boss how I really felt about working, I feel unworthy of the role.
Reality is, juggling work with my already chaotic life is extremely overwhelming and quite frankly making me dizzy.
I love the idea of working, earning my own pennies, I enjoy what I do, and have absolute desire to do the job and have the passion to go with it.
I put my all into it (well, I’m not sure this is true, as half of me is asleep most of the time).
Needless to say, I have managed to plod on and stay in the job.
How? Because I am surrounded by people who get it, my boss is full of compassion and knows the demands of my life, as she also experiences similar challenges within her own family.
Patience and time is the biggest gifts within our group. We have to be gracious with one another.
This is not something I believe is common. As I know for a fact, if I worked elsewhere I would have lost my job by now.
So why is it, that it is so difficult for Parent/Carers of children with disabilities to find jobs? The answer is, there is too much pressure and not enough flexibility.
Now, I know this is not the case everywhere, as I know a few parent/carers who do manage to work, and do so very well, and are given grace.
However there are more families who are financially struggling and parent/carers are becoming mentally unwell as there is just not enough on offer in the world of jobs.
I also understand that some families just cannot juggle it.
I’m getting to that point! I always said that the minute Zachariah suffers from me working, I’ll stop. And right now I’m sitting on a very wobbly fence, as I am not 100% available.
I’m rushing to appointments unprepared, I’m leaving medication orders late, and almost running out!
I’m grumpy and tired a lot of the time, therefore Zachariah must feel this.
I feel too stretched. I feel it’s now time to reevaluate my life and structure it better to suit our family.
As money isn’t everything!
Now, this doesn’t mean I’ll quit, it means I’ll look at my hours, my voluntary work and my other commitments. See what I can do to help me stay in work.
And if it comes to the point where work is causing too much chaos, I can look at leaving.
What I would also like to add to this is; I have found myself getting quite jealous of my husband. He goes to work and pretty much gets left to focus on that.
It’s only been extreme measures that he has had to leave work. Like the time Zachariah needed surgery, and the time he ended up in resus!
Whereas for me, I have to be available 24/7 for Zachariah. It’s me that has to leave work, it’s me that has to cancel hours due to appointments, and leave early to arrange meds.
I know this is the way it needs to be, Tim is the main earner, but sometimes it gets to me that I have nothing else that is just mine, something that I can put 100% into.
Things are harder to digest when you know you can’t change them.
This is the way it needs to be right now.
My Daily Miracle xx