October 15th: International Infant Loss Awareness Day

I’d forgive anyone reading not to know this information but October 15th is International Infant Loss Awareness Day. Almost twenty years ago, the then President Ronald Reagan proclaimed this date as the one on which parents and families who have lost a child can share their grief openly, remember their children and offer support to each other. The candle lighting ceremony takes place at 7pm across all time zones worldwide. It is designed to ignite and sustain awareness and solidarity in a peaceful and hopeful way.

Two years ago, on 18th July 2014 our youngest daughter, Romy, died at the age of four months. There was no warning; no illness, no symptoms, no doctor’s visit. My pregnancy had been of the usual gestation, the birth was beautiful and she was a happy, healthy baby girl. On the morning of July 17th, she and I visited a local cafe where we had a lovely time. By lunchtime she was unconscious and having a seizure. By 4:15pm the following day, following hour after agonising hour of tests, waiting, and hoping, we had allowed her life support system to be switched off. She had experienced a brain haemorrhage and it was too sudden and too powerful for anything to reverse. For the ensuing two years I was swallowed whole by a dense fog of grief, anger and unbearable pain.

During that time that I fell apart. I tried every type of counselling and therapy I could, just to save me from going under. I wanted to keep some vague kind of normalcy for our two older children. It was only when, early this year, I found myself at a writing group run by the wonderful Mothers Uncovered that I began to understand that writing was the way forward for me. I started my blog, Remembering Romy, to help me to sift through my feelings. As my grief began to evolve I became determined to use my experience, my blog and any other skills I could muster. The aim being to help others who find themselves members of this club that nobody wants to join.

As I write, I currently have several blog posts in the pipeline. I am planning visits to both the hospitals where Romy was treated (The Royal Alex here in Brighton and Kings College Hospital in London) to meet and thank staff. I’m planning some speaking and am at the beginning of a long road to set up a charity to help bereaved parents living with Post Traumatic Stress Disorder.

I am so grateful to Brighton Mums for affording me this platform to reach out to others in our city. It is such a valuable resource for our community. Whether you have lost your own child or are a friend, parent, relative or coworker to someone who has, please reach me through my blog (see below). In time, I want to start a local group for bereaved parents to gather and support each other. I would love to hear from anyone who this may help.

At 7pm on 15th October I will be lighting a candle for Romy. Earlier on that day I will be lighting another single candle, on my youngest son’s birthday cake as he turns one year old. The irony is not lost on us that our precious fourth child, born just fifteen months after Romy left us, chose to arrive on the day that marks infant loss. To me, this is a sign of the indomitable essence of life. Our children are not ‘lost’. They go on, forever, in our hearts. However deeply we grieve, we are always still in there, somewhere.

Guest Post by Ali Norell: http://www.rememberingromy.com

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