I recently gave up work to become a full time mum/carer for Oscar.
I will admit that I was not overly upset at the prospect of finishing work as I had wanted to finish work since we got Oscar’s diagnosis.
However, we desperately needed to move house as the house we lived in could not be adapted in any way to meet Oscar’s needs, so I had to keep on working. Plus, like everyone else we have bills to pay.
We did not get Oscar’s diagnosis until a few weeks after I had gone back to work. It was a devastating time for both myself and my husband but we carried on working and did not have any time off to grieve for the child we thought we were going to have. We just got on with it.
It was very difficult juggling work with raising a disabled child. The endless appointments meant using up holidays or asking for leave. Then if you took leave it meant making up the time working through lunches or starting early. It was exhausting.
As time went on I knew that things could not go on as they had.
I felt tired and ill and knew I could not work full time and look after Oscar, so I dropped down to doing four days. This was also a mistake.
My day off to spend with Oscar became ‘appointment day’. There were very few days we actually just got to spend together doing fun stuff instead of attending appointments. Mummy was not always very popular on ‘appointment day’.
There is not enough adequate holiday childcare available for children with complex needs and we also had to get Oscar to and from his school which is on the other side of town from where we live.
Luckily, we had managed to move house in this time, so the decision was made that I would finish work. There was really no other choice but I felt like it was the best choice.
As I approached my last week of working my colleagues kept asking me how I felt about leaving. I had worked at the same company for thirteen years and I have never not worked.
I began to doubt if we were doing the right thing as work was ‘my’ thing. It was where I was ‘Jane’ and not just ‘Oscar’s mum’. I would miss the daily interaction with my friends at work.
We thought he was going to have a seizure which he has had in the past. Thankfully, he didn’t but no matter how many seizures your child may have had it never gets any easier to see them going through that traumatic experience.
At that moment I knew that finishing work was definitely the right thing to do.
I get to spend much more quality time with Oscar doing fun activities and I can take and collect him from school. It is a lovely feeling when Oscar’s face lights up at the end of the school day because he has seen his mum has come to collect him.
So, now I feel I have the most important and greatest ‘job’ and I would not change it for the world.
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