Living with a disabled parent – Tegan’s story

When I was 13 my Mum was diagnosed with Cauda Equina Syndrome. It was a very scary time for me as I did not understand what was happening. Before Mum went into hospital, she was at home in a lot of pain, I had to help her with her medication and look after my little sister when my dad was in work. Mum was in a LOT of pain and I felt helpless.

When she went into hospital, at first, I felt relieved that she was going to get better. But a few days later it became serious and I remember my Nan telling me that Mum was going to need an operation.

Mum was sent to a hospital an hour away and was in hospital for a few weeks. It was hard for me and my sister, we were staying at my Nans and going to school so Dad could visit Mum. When we went to visit it made me sad.

When Mum came home from hospital our lives changed very quickly. I had to grow up fast and learn lessons that many children my age might not have. Mum wasn’t able to walk without a Zimmer frame, couldn’t lift anything or get up and down the stairs. I had to help my Mam to wash and dress and help my Dad look after my little sister and do routine chores around the house.

 

I had never heard of this condition until me and my family were affected by it.

Two years later, I still wonder how different life may have been if mum was operated on quicker.

If I’m honest, I can’t really remember what Mam was like before CES, but I remember we used to do a lot more. We are not able to go on long-haul holidays anymore and mum isn’t able to go on rollercoasters or waterslides. A lot of the things we used to do, we can’t do anymore. Even simple things like going to the shops take a lot of planning and I need to help Mum with her wheelchair or scooter.

 

At the beginning I felt embarrassed, I was embarrassed of what my friends would say, but now it’s become normal. The good things that have come out of Mum’s disability is that we spend a lot more time together, we talk a lot more and we laugh a lot! Our bond is closer than it has ever been.

 

I have realised that people who face battles and fight through pain every day are the real heroes in life. Knowing myself what goes on, living with a parent with a disability has given me a lot more respect for carers and for other people like me and my family.

 

What would I say to other children living with a parent with a disability?

I would say that it’s ok to feel sad, scared and even embarrassed.

It’s ok to be angry, to be angry of the situation that has changed everything.

I want them to know that they are not on their own.

There are people they can talk to. There are charities that can help. In time it will get easier and you will see the positives from the situation.

The most important thing is not to keep everything bottled up, talk to your friends, to your family or your teacher.

You don’t need feel guilty for how you feel, and you don’t need to go through this on your own.

 

Tegan aged 15.

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