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On September 6, 2006, our eldest son Eddy was born with congenital heart disease. We’d had 20 weeks to get used to the news, after learning Ed had Dextrocardia during my 20 week ultrasound. Nothing really prepares you for becoming a parent and certainly not for becoming a parent to a seriously ill child.

Ed spent much of the first 12 months of his life in heart failure and in out of hospital. There were several times when he had to fight very hard for his life. You learn a lot about your child, your relationship and yourself, within the walls of an intensive care unit. 

When Ed was critically ill, the most important lesson I learnt was to take one day at a time, and in fact when things were really dire, I allowed myself to think of only one minute at a time. Perhaps it was my brain going into survival mode, allowing me to only take in small compartments of time, but 9 years on, I still draw on the lessons taught to me by Ed. I used to repeat a little mantra, “What’s the time? The time is now” and I still use that saying to ground me in the moment.

Having a seriously ill child has taught me not to sweat the small stuff and truly appreciate the simple things. Sometimes I find myself looking around at our 3 boys, my husband and our dogs when we are all at home and I feel completely overjoyed. Having known such darkness, I see great light in ordinary day to day life and maintaining a “present” mindset helps me to recognise those perfect moments.  For me taking it “one day at a time” has been a pathway to peace.

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