The Special Needs Work-Life Conundrum

Sarah Meyers by Sarah Meyers Additional Needs

Sarah Meyers

Sarah Meyers

I'm the mum of two beautiful, vibrant, opinionated girls, one of whom has a complex, life-limiting condition. Living in Australia (a place I'd neve...

My career defined me.

I had an interesting job and loved it when people asked me what I did for a living, because it sounded so damn fascinating (even though in reality it had the same amount of daily grind as any other job).

I was good at my job, enjoyed doing it, and never minded putting in extra hours. I spent many evenings after work having drinks with colleagues, building relationships and networks.

My career, above all else, was what gave me confidence and made me feel good about myself.

When my first daughter, Vegemite, arrived on the scene, there was a major readjustment.

Suddenly, work wasn’t the be-all and end-all in my life. I didn’t work late – it was no longer an option.

I negotiated slightly reduced hours to balance work and life and although it was difficult – very difficult – I still managed to do my job well and was even promoted.

A career with a child was hard and not nearly as rewarding or enjoyable, but it was still possible.

Then Miss Z was born and everything changed again. When she was born we had no idea that there was anything wrong, so I planned to return to work part-time when Miss Z was four months old, leaving her under the care of a nanny until she turned one year old, after which, she’d attend the same day care as Vegemite, and I would consider increasing my work hours.

I thought it was a brilliant plan. And since Miss Z was a grumpy and difficult baby, I actually looked forward to the ‘break’ that returning to work would give me.

Shortly after I returned to work, the big seizure happened. At five months old, Miss Z had a major status seizure lasting over 45 minutes.

During the seizure she stopped breathing, had to be intubated and remained on a ventilator in PICU for three days.

Initially doctors thought that it might have been a particularly nasty febrile convulsion, but a few weeks later she had another (thankfully shorter) seizure.

And then another.

And another.

By the time she was seven months old, she was on anti-seizure medication and had become a regular visitor at the hospital – both through the Emergency Department and as an out-patient, visiting various specialists.

I tried hard to keep my work on track. I put in hours in the evening after the girls had gone to bed in order to make up for time I’d missed due to appointments and emergencies.

I typed frantically on my Blackberry from hospital waiting rooms. I never said no to anything I was asked to do– I didn’t want to get a reputation as someone who was unreliable or lazy - and made it work no matter what.

This sometimes led to some fairly ridiculous situations.

Miss Z had a long and unexpected hospital stay that clashed with a conference where I was scheduled as a speaker.

I spent the night before preparing my presentation in a dark hospital room.

My husband took the day off work to stay with Miss Z and I rushed home early the next morning to shower and change into a suit.

It was then I realized I had left my make-up bag at the hospital. There was no time to retrieve it.

So I lived my worst nightmare – not only public speaking, but public speaking without make-up.

I survived and the presentation was okay, but it wasn’t my finest hour. Instead of feeling a sense of accomplishment or celebrating the end of the conference with a drink with colleagues, I was tired, discouraged and distracted.

Small talk during the breaks felt empty – I was too concerned about Miss Z to care about what someone did at some other company.

I left as soon as possible to return to the hospital. It is impossible to explain how difficult it is to divide not only my time, but my attention, focus and energy between caring for Miss Z and my career.

The two feel like they’re forever at odds with each other.

Or how the constant worry, vigilance and never-ending to-do list associated with caring for Miss Z has slowly sapped away the passion and excitement I once had for my job.

Last year, I thought I had finally made a breakthrough. I was doing work that I enjoyed and had managed to organize new childcare for Miss Z that meant I was able to be more flexible with my working hours.

Miss Z was also going through a good patch and we had hardly spent any time at the hospital.

Unfortunately, that coincided with the arrival of a new management team, who decided to make me redundant and employ me as a contractor instead. And then Miss Z became unwell, and the doctors decided that she is unlikely to recover.

My focus is now so firmly fixed on Miss Z – and the rest of my family – these days that it is difficult to find much enthusiasm for work.

I do it for the money and because I fear that not working at all will mean I’ll never be able to return to work.

And because occasionally I have the opportunity to give all my attention to my work and I remember why I used to enjoy it so much.

Watching my career crumble has been one of the hardest parts of being the mother of a child with special needs.

I know some parents of children with special needs have successfully balanced their careers and caring responsibilities, but I have not.

It is both easy and hard to accept.

My love for Miss Z and my desire to help her make the most of her life far outweighs any regrets about work.

There was never a question of which would come first – it was always and will always be Miss Z (and Vegemite, too).

But I sometimes still struggle with what that means for me, and my identity.

It is my work-life conundrum.


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