BEATING COWDENS SIDE BY SIDE

There have been so many times in the last

ten years when giving in to Cowdens syndrome would have been so easy. I could have quit my job at the first sign of disaster. I could have curled up in a ball and totally withdrawn from society. Or I could have sunk to even further depths of depression than I did. But I didn't. The psych calls this resilience, and she says I'm the queen of resilience. I have to admit, it doesn't always feel like that, but that is what she says so I'll wear it.

In the same way I've tried to teach my children that giving up is not an option to take lightly. If you want something you work for it. If you have a goal you work towards it. And, you don't give up unless you've exhausted every viable option. This has been an especially important lesson for Ashton, my eldest, who was also diagnosed with Cowdens syndrome early last year.

Part of my ability to cope comes from being of a certain age. I was therefore concerned in 2013 when Ashton was struck down with a debilitating brain condition. It's hard to expect a 19 year old to understand and to fight and to not give up. I remember telling her through each of the 16 brain procedures which ensued, that we would beat this and that her Dad and I would do everything in our power to help her through this. But from day to day, we never knew what we would find. It's hard to explain to someone who hasn't lived her life yet, that life is worth living for.

Anyone with a debilitating medical condition will tell you that life is never, ever the same again following diagnosis and that you will change as a person too. Friends who support you "en masse" at the start often dwindle with time, as they can not understand why you are not better yet. They run out of conversation and simply move on. Life therefore can get lonely but  you do learn to appreciate those that are there for the long haul with you more.

Doing day to day activities may become a challenge. In my situation working full time was no longer viable so casual employment became my income. Not the best pay but better than nothing! In Ashton's case, her brain procedures left considerable scarring which induced epilepsy. This resulted in the loss of her drivers licence, a bitter pill to swallow for a young woman. She could have crumbled, but instead she chose to find alternatives. It's how we have to roll.

The hardest challenge for my daughter in the last few years has been her studies. When all hell broke loose she was in the second year of a Bachelor of Arts degree. Fighting for her life she had no option but to withdraw. This was devastating for someone who had dreamt of going to university since childhood. But she fought, improved and returned...many times. Yes, relapses hindered her BUT she always went back, did a bit more and passed another unit. At one stage, after two craniotomies, she almost gave up, but she pushed through and would not let the condition win.

Tomorrow is a very special day in our family because tomorrow Ashton graduates from university. Despite extensive surgery, she has completed her degree and will stand up with other graduates at the University of Western Australia to be recognised. I am so proud I fear I may burst. I want to tell everyone how amazing a feat this is and how in the face of considerable adversity she has won  a gold medal. But instead I will sit quietly in the prestigious Winthrop Hall ( where I once graduated)
and cry a few quiet tears of joy and thanks.

We have this condition for life. There will be lots more ups and downs, but tomorrow will be a definite up. Tomorrow we are beating Cowdens side by side.

FROM THIS:

TO THIS

Till next time...xxxST