Reflecting on a year of change

Farewell 2014Some years come and go with barely a ripple but for Anthony and I,  2014 was a year of extreme highs and extreme lows and was certainly one year that will be forever  etched in our minds.

In January we welcomed a healthy, albeit premmie, baby into our world and began discovering a whole new way of parenting – one that doesn’t involve therapists, medication and tube feeding. Continue reading


Feeling the sorrow across the miles

Photo by Henkster via SXC

Photo by Henkster via SXC

It was during lunchtime at work, sitting alone in the tea room that I decided to quickly check Facebook on my phone. It was then that it happened. Whack! Like someone hitting me in the stomach. My chest tightened and I immediately felt like I was going to vomit.

The status update began with, “Today heaven received the most beautiful loving angel it will ever see.” A beautiful little girl, who I had been following for weeks and months, had lost her battle with Pearsons Syndrome.  She had fought hard in recent weeks, her mum posting pictures of her smiling face, painted nails and middle of the night tea parties.  She was an example of how resilient children are in the face of adversity and I felt utterly gutted at the thought of her gone.

For the rest of the day I struggled to keep it together. It probably seems odd to be so distressed over the death of a child I had never met but as with all children who have been burdened with the same disease as Aidan I feel a connection to them and their families in a way that others may never understand. Continue reading