Living With Epilepsy – My Mum

Today sees the final story in the series of personal accounts that I have posted. This one is particularly special to me as this account is that of my mum’s who has walked beside me as a tower of strength through my journey with epilepsy.  I am so fortunate to have had someone in my corner who fought so hard to give me the best life possible.  I hope that mothers who read this that have children with epilepsy in particular, can find solace, hope and potential help in their endeavour to create the best life for their child or themselves as possible.

Mum

A Mother’s Tale

A mother’s natural instinct is to protect her child. When illness or disease strike they come as a robber in the night leaving you helpless and afraid. Fortunately, I was raised by my mother to count my blessings, to appreciate there were others in a worse situation than myself and that every cloud has a silver lining. This created my philosophy of gratitude, with the attitude of an opportunist as opposed to a victim. Therefore, when Freya was diagnosed with epilepsy I knew in my heart I wanted to raise her to live life as a grateful opportunist, not an epileptic victim. Yes, she needed to be sensible and safe by acknowledging its presence, but I didn’t want the epilepsy to dominate her everyday life, her hopes or her dreams. After all, how could I let her down when she had fought so hard to live during viral encephalitis at three years old?

The doctors were amazed at her recovery, calling her a determined little fighter. No change there then! Bob Dylan sang, “There’s always a reason why someone’s life has been spared”, and that’s what I believed thirty one years ago in an ITU room, when Freya survived a pivotal night to beat the odds and live. She had work to do and a destiny to fulfill.

I consider myself blessed because not all mothers were as fortunate in that 1984 outbreak. Many children and teenagers died, whilst many more survivors were left facing devastating life long disabilities. So to have my daughter alive with epilepsy seemed a small price to pay. But when I was told she would be on AEDs for the rest of her life, epilepsy began the transformation of my life too. All I knew was that I needed to give her the best quality of life, with the least amount of seizures and drugs. My quest took me from rote conventionality to alternative openness, and I stepped into a captivating world full of surprises and possibilities. So much so that eventually I became a therapist immersed in the ancient wisdom of health and well-being. I accept without hesitation that modern medicine saves and extends lives. Yet the old ways of our ancestors, traditional medicine and natural therapies, still work healing miracles today with no damaging side effects.

Such a lifestyle change makes you different, quirky, even whacky and not always accepted by others. As a mother on a mission this was unimportant; but for Freya I realised it could be difficult and compound the already isolating label of epilepsy. As a teacher I knew children could be heartlessly cruel and decided education through knowledge and honesty was the best approach. I explained and documented her epilepsy protocol for the staff at her primary school and donated a selection of books on epilepsy to the school library. These were for general use by the children but also for the class teachers to read and use for discussion. The school was supportive and appreciative, especially as Freya was the only epileptic pupil.

Similarly, I wanted Freya to gain perspective and not be overwhelmed by her condition; so when I taught in a school for mentally able, but physically disabled, children and teenagers it presented the perfect opportunity. Some of the children were terminally ill whilst others were confined to wheelchairs with a variety of diseases or multiple disabilities. Many would not live beyond their teens. My class of teenagers worked hard, were full of fun and lived every day to the full. Their young lives had been consistently marred by mental and physical pain, increasing debility and a dependence on carers for their basic needs. Yet they were inspiring to be around and immensely humbling. Whenever possible, Freya would come and spend the day with them and be part of the class. Even at that young age she showed a natural ability to relate and mix effortlessly with disability, an early indication of her later work.

The ill health of any family member affects the whole unit but when it’s a child, siblings are particularly vulnerable. Freya is graced with a loving, generous and caring older sister who even at six showed a mature understanding and consideration of the situation. She never made a fuss, demanded attention or bemoaned the inevitable lifestyle changes. I didn’t want Freya to feel she was the family focus or that her epilepsy gave her special privileges, but also, I didn’t want Jael to feel overshadowed or less important. It’s a fine line to walk and one that truly concerned me as I wanted both girls to feel equally loved and worthy.

In truth, my role in our partnership has been the easy one in comparison to Freya’s everyday reality of epilepsy. From the little girl of three onwards she was willing, trusting and uncomplaining in all we attempted or tried. Moreover, in our years together she has been as much my teacher as I have been hers because she chose bravely to live as a grateful opportunist. She has created, and continues to create, an independent, compassionate and meaningful existence with both courage and endurance. I have the highest respect and the deepest admiration for my daughter and I’ve often wondered if our roles had been reversed, would I have lived so fearlessly and fully?

It is an honour to be her mother and a privilege to share her life. Thank you my dearest Freya.

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