Purple Day 2014: A mum’s journey with an epileptic son.

By NICOLE THOMSON-PRIDE

I could hear her taking in deep breaths in between the silence. I didn’t know what to say. But I knew on the other end of the phone there was a 25 year-old mum trying her best to hold it together. Trying not to cry.

She had stayed so strong throughout the whole interview. She hadn’t cried once. Not when she told me about her son’s first seizure. Not when she recounted how a beautiful, healthy young boy had been gradually stolen away from her. Not even when she told me about the moment she realised her little boy had Dravet Syndrome, which meant he would never live a normal life.

But now there were tears. She was crying. Her voice was wavering as she told me how she desperately wanted a cure for Dravet Syndrome – how she desperately wanted a different life for her nine year-old son. But like the truly strong, amazing woman Tara Jeffery is, she composed herself and finished the interview.

I’ve met a few amazing women in my life. Women who have displayed so much strength they could have been pillars holding up a stadium. Women who have learnt to wear a smile and hide the weight of the world on their shoulders. Tara is one such woman. And when I met her half way through last year, she was on a mission to bring laughter and joy into her sick son’s life.

Tara’s parenting journey first started with a positive pregnancy test when she was just 16 years old. That moment you realise your pregnant – that moment you realise there is a little life growing inside you – can be such a daunting and overwhelming experience for women of any age. And for Tara it was definitely a shock. It took a little while to get used to the idea. But once she did, she became very excited about becoming a mum.

She told me how she’s the type of person that has to know everything, so of course she found out the sex of her baby the very first chance she got. It was a boy. She had wanted a girl. But soon enough she was day-dreaming about all those things mums of boys will probably have to face – footy practice, dirty socks, video games… just, you know, boy things.

The moment she held her son in her arms for the very first time, she knew there was nothing she wouldn’t do for him. But what she didn’t know at that moment in time was just how much she would have to end up doing. At the age of four, Sean was diagnosed with Dravet Syndrome, a rare and catastrophic form of epilepsy that affects every aspect of Sean’s life.

His time on this earth is precious, and sadly, it might also be limited. Tara is all too well aware of this. But she doesn’t dwell on it. She hugs him tighter, showers him with kisses and says, “I love you.” every night before switching off the light… just in case.

You would think if a 16 year old were brave enough to bring a child into this world and raise him herself – by herself – then maybe, just maybe, the universe would be kind to her. She would be gifted with the perfect child, who made parenting easy.

This wasn’t the case. But she was gifted with a child who makes parenting worthwhile.

When I asked her if she would change anything, she told me she wishes she could change life for Sean. But she said if I was asking her would she change being Sean’s mum then the answer was no. She felt lucky and privileged to be the guardian angel of this beautiful, little boy, who charmed strangers with his cheeky smile.

It was comments like this that made me realise how selfless, caring, inspiring and uplifting this young woman is. Not once did she ask for my pity. Not once did she complain about how financially tough it is being a single mum raising a sick little boy with high medical bills. Not once did she complain about being tired or exhausted or not having any time to herself.

She told me about the generosity of strangers. She told me about her beautiful and supportive mum. She told me about all the amazing family and friends in her life. And she told me about the doctors, nurses and carers who make Sean’s life possible. She was genuinely thankful. She is genuinely happy. She genuinely appreciates every day with her two babies. And as a mother, she doesn’t ask for much more than that.

Tara Jeffery is truly someone special. Her commitment, her positivity, her appreciation, and her love for her children and life are a lesson to us all. Tara is the type of person who smiles, even if she gets caught out in the pouring rain. She knows life is too precious to ever let the little things get the better of you.

Today is Purple Day, which is a global event dedicated to raising the awareness of epilepsy.

Nicole Thomson-Pride is a freelance writer who also blogs at Splash of Pink about business, health, lifestyle and parenting for women. You can follow her on Twitter here.