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.
When Aidan was diagnosed I knew no one with the disease. I had so many questions and nowhere to get answers. His doctors had only ever seen one case of it and literature on the internet was out-dated and of no relevance. I made contact with a few families through an internet forum but it wasn’t until one remarkable dad set up a Facebook group that I truly got the help and support I needed. It was like a gift from heaven. Being able to ask questions of other families, talk to people who understood, have others to share with – in some way it was like having the mother’s group I’d missed out on when Aidan was born premature.
Yet in connecting with these families, I must also come face to face with terrible loss. Every time a child loses their battle, I am devastated. Worse, I feel angry. Why this disease? Why this child? All these children have the same disease, with the same access to health care and the same dedicated parents, why take some and not others? Who picks who survives and who doesn’t? It doesn’t seem fair. None of this is fair.
This inevitably leads to an enormous amount of guilt. How dare I feel sad when someone else is facing insurmountable grief? What do I say to her grieving parents? Words are meaningless at this time and besides, I am one of the lucky ones. Do they even want to hear from me?
Then there’s the reality check it provides. It’s selfish but no matter how hard I try to ignore it, the death of a child with Pearsons Syndrome reminds me just how fragile Aidan’s life is. I know one day, I won’t be the lucky one and I will be feeling that enormous emptiness of losing a child, just as another family is feeling tonight.
Taylor, the world was a better place because of you. Rest in peace xoxoxo