Last month something terribly sad, yet not unexpected happened. My sister in law gave birth at full term to a baby, who was born sleeping. I say not unexpected because from 12 weeks there was indication of multiple abnormalities. As the pregnancy progressed it was discovered that my niece Poppy, had not only a severe form of Congenital Heart Disease but also Edward’s syndrome, also known as Trisomy 18. Trisomy 18 is usually fatal, with most babies dying before birth, and those who do make it to birth typically live a few days. However, a small number of babies (<10%) live at least one year. My sister in law had made it to full term. Surely Poppy had defied all the odds? She would be one of the few that lived a few hours, days, weeks or months. But it was not meant to be. The day before her due date my sister in law went for a check up, and no heartbeat could be found.
It was decided. None of us would get to feel the warm of her gaze, to hear her cry, feel her wriggle, to feel her grip around our fingers or to cuddle a most perfect child. I had some precious moments holding her, but she wasn’t there – her spirit had gone.
The funeral was a sunny day. My brother and sister in law spoke beautiful words about their journey and shared their innermost feelings. It was a priviledge and honour to hear them. Poppy was buried in love – her coffin was built by her Uncle, her dress made by an Aunt and she was all wrapped in a blanket made by her Grandma. I will never forget the image of my brother lowering his daughter into a grave. I found it unbearable to watch, yet I forced myself to watch him do it – to try and understand in some part how he must be feeling, but I can’t possibly understand.
My sister in law writes about her journey over at The Hearty Life. You might just know somebody who has experienced a still birth or had a baby with Edward’s syndrome, and she’s not afraid to talk about it. My brother and his wife are changed forever – their lives will never be the same again because they’ve had a shift in perspective. They are adjusting to life without her, with the hope that time will ease the pain.
It is an times like this when you wonder what life has in store for you. Yes there are things we can control, but there are so many we can’t. Life will throw things at us and we have to do our best to manage them. How can we prepare ourselves for experiences like this? I’m not sure we can.