Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)

A Unique Christmas Experience

A Unique Christmas Experience


A Unique Christmas Experience

By Molly O’Reilly

Since 2007 the Christmas experience for our family and many other SOFT families has been unique.

My sister Lucy was born October 25th 2007 diagnosed from birth with Edwards’ Syndrome (Trisomy 18). She was a small baby with unique features. She was a lovable baby that everyone who saw her wanted to cuddle her but was always careful as she seemed as delicate as a porcelain doll.

Our family’s first unique Christmas took place in December of 2007. Lucy was seven weeks old. It was our first and unfortunately our last Christmas as a family of five. The house was full of relatives all hunting for a cuddle and a photo of this new baby. I can recall waking up Christmas morning excited and naturally too early because we couldn’t sleep on Christmas as we were too hysterical to see if Santa arrived. Not only did Santa arrive he brought gifts for Teresa, myself and our new baby sister Lucy. As mammy to this day claims it was her favourite Christmas despite the fact Lucy cried for the majority of the day it was still perfect. The night of Christmas Eve our parents slept for a full night in nine weeks, Lucy did not cry once that night. That morning they woke in a panic and ambushed her cot to see how she was. She was fine, just preparing mam and dad for me and Teresa’s early start I suspect. Our grandparents spent the day with us that Christmas from morning until night both helping mam and dad look after us and celebrate the festivities.

That Christmas has been described as the best Christmas our family has ever had. Unfortunately Lucy passed away shortly after on New Year’s Eve. Although a mournful end to the festive season, the year was still incredibly special.

Every year Christmas and New Year is bittersweet, the absence of someone special will cause a sense of loneliness however Christmas is still special as Lucy’s presence is still celebrated. Every Christmas day we visit Lucy’s grave, we light the SOFT candle and remember her.

Although in the coming weeks to Christmas everyone’s excited about the season it’s natural given the loss of a loved one to feel exhausted from the constant build up to the festive season. Christmas is meant to be spent with those we love which can make the special season difficult without our special people. It’s normal and natural to feel an inch of heartbreak watching your other children awake on Christmas day without thinking what could have been. But just because they are not physically present doesn’t mean they aren’t watching.

Christmas can be poignant, it is important to remember no matter what your emotions are, they are valid, important and deserve to be recognised.