Additional Needs

Career Vs Carer: The Perpetual Balancing Act

Posted by Emily Sutton on 19th October 2015 Additional Needs, Advice & Support, Disabilities

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We were young, free and single. Matt and I met ever so romantically over a spreadsheet.

He was an accountant in an NHS Trust and I was their auditor. It was love at first pivot table.

We were hard working and full of energy.

Matt had just qualified after years of exams, and his promising career was taking off.

We had similar interests, namely cycling, rock concerts and general decadence.

Life was a systematically organised rollercoaster of fun blended seamlessly with sensibility.

Matt changed job and moved up a notch in the Grand Career Plan.

We set up a small accountancy business together working from home to earn some extra money.

We had no idea of this back then, but we had an immeasurable amount of time at our disposal.

We had ample funds to line our pockets, which allowed us to fill our lives with richness.

We decided to start a family.

We knew it would be life-changing in so many ways, but we had absolutely no doubt that we were ready.

We were correct.

Having Jenson was the best thing that we ever did.

People had warned us of the things we would be relinquishing, but we never looked back at our former days and wished for them back.

That was then, this was now, and this was great.

I didn’t miss work.

At all.

I loved being a mum, and welcomed the new purpose I had in my own, "Grand Life Plan."

However, life during Jenson’s first two years was tough.

He had a total of 200 appointments:  a staggering statistic that I still can’t quite believe.

When I returned to work when he was one year old, I found it especially hard-going, but we had no choice financially.

I still find it hard now.

In fact, merely balancing my job with my hectic schedule proves difficult enough.

I sometimes wonder how I will get through a week and the list of essential tasks and appointments.

My primary job is carer, PA, therapist (and the list goes on), nonetheless I manage to squeeze in my 3 days of proper work.

It is an everlasting juggling act.

There are times when I have to work late into the night to make up the hours, where I simply haven’t been able to deliver my 3-day working week during working hours.

Our accountancy business is running at a snail’s pace because everything else takes priority.

We daren’t abandon it as we know that it may one day prove to be a necessary source of income.

I have never had grand aspirations to achieve highly in my career; I am content with a good, steady job.

Lucky really, because the option of rekindling my career and going up into management is simply not viable.

Where other mums are able to shift the day-to-day responsibilities over to caregivers, albeit for a handsome fee and a huge burden of guilt, this is not an option for us.

I have to not only attend many appointments, but co-ordinate Jenson’s care plan and deliver therapies that I could not entrust on anyone else.

Matt continues to mark his career territory in his new job, and struggles to attend Jenson’s important appointments while working the hours required to establish himself on the professional ladder.

He is a terribly sensitive soul and he is perpetually torn between being there for his vulnerable son and emotional wife, and investing his time at work in order to mark out a robust future.

I am so proud of my husband, and so grateful that he takes the pressure off me to be a comparable contributor to the family finances.

He is my first line of defence, my emotional backbone and the family provider.

But the job sometimes consumes him during this career-defining time of his life.

It really upsets me to see the guilt and sadness on his face when he returns home having missed story-time and snuggles for the forth night in a row.

As for me, despite doing my best to give Jenson everything he needs to give him the best start in life, I still go to bed every night with a pang of guilt that I could have done more: more physiotherapy, more signing practice, tried him on more foods, given him more cuddles.

Life with a non-ambulant, non-verbal toddler can sometimes be tedious, where I am so limited to the activities I can entertain him with.

By 6 o’clock I desperately need adult company, and have to override my frustrations when Matt repeatedly returns home from work later than he had intended.

It was his tenacity and perfectionism that had attracted me to him in the first place and now, a few years on, I find myself admiring and despising these qualities in equal measures.

Last week, Matt was offered a new job.

One that pre-Jenson, we would have celebrated and welcomed with absolutely no reservations.

It is the success story that he mapped out all those years ago when he buried his head in those text books for years on end.

We have deliberated over whether he should take the job, mainly because of the fine balancing act we feel that we are already treading.

It will involve more travelling, later shifts at the office, and more responsibility.

Less flexibility to attend appointments, and less capacity to mitigate my emotional requirements.

Matt adores his evening cuddles and snuggles with Jenson, and his morning drop-offs at the nursery.

He tries his best to get to the gym and play football each week.  

He would most likely be surrendering all these things.

Not to mention further depleting the time we spend together in the evenings, catching up and taking stock of our busy lives, and giving each other the love and attention that we need.

We already struggle to maintain the equilibrium now, so we are both worried what the future may hold.

I am an emotional liability most of the time these days and I know that Matt is very conscious of doing anything that will rock my instability any further.

We decided that Matt should turn down the job.

It was a hard decision, but I think it is the correct one.

The time will come when Jenson’s needs become less, and I think we will know then that the time is right.

This decision making exercise has shown me just how having a special needs child impacts so extensively on every member of the family.

It makes me realise that Matt needs my support as much as I need his; he carries a larger emotional burden than I credit him with.

It would be easy for me to use all my energy on Jenson but the truth is that despite his outer strength and resilience, Matt warrants a good share of it too.

So this post is for all the daddies out there that carry such a weighty burden of responsibility and who carry on regardless, for the sake of their beloved families.