This was first performed at MAM Behind the Mike in Smock Alley but was developed for The Moth.
Your life changes when you have a child and your perception of what that change is very different from the reality.
When your child has special needs, your perception of parenting changes, you usually have to write your own manual.
With a child with additional needs, people’s perception of you changes. “ You are so strong” – “I couldn’t do that”- as if you have a choice.
We have little choice but to take strength from that perception and often refer to ourselves as warriors as we have to for our children’s rights every day and often on several fronts at the same time
Your perception of your family changes when you have a child. We realise that our parents were as lost, clueless and as sleep deprived as we are. Family lore and legends are re- examined and reassessed usually to look for similarities between the newly arrived and the previous generations.
When my daughter Poppy was born, I was prompted to reassess my perceptions of my maternal grand-mother, Lil.
Lil died of Alzehimers when I was five and because my grandfather remarried, it was almost impolite to discuss her. All I knew was that my mother had little time for her. Emelie, my mother was sent to a boarding school at an early age and I think she felt ( though she would never state it) excluded. What I knew was this… Lil was a champion flower arranger, liked a neat house, a poor golfer and cook. She was religious and always well turned out. An insubstantial woman was my perception, a bit of a corporate wife, air head, but even then I couldn’t reconcile this image with other stories.
I know for instance that she had eloped to marry my grandfather ( a flame haired Scots Presbyterian)) She was disowned by her family for doing so… not really the action of a social butterfly.
It was nagging at me.Rubbing like a pebble in a shoe. It was my step grandmother, Patsy who was a good friend to Lil and though brought her own unreliability was more reliable and comfortable with the topic than Emelie. She told me that Lil had 9 miscarriages before Emelie was born with a shock of flame like hair on the Sabbath day- Bonny Bright Good and Gay!
There were more miscarriages and more pain until three years later, Stuart, her son was born.
I have vague and cloudy memories of him and until Poppy was born, he was never talked about- too painful a subject.
Stuart was profoundly physically and intellectually disabled and not expected to live. Her priest and friends begged her for the sake of her marriage, for the sake of her daughter, for the sake of her health to put him into Lota Mor, an institution. She didn’t she cared for him at home and the family suffered the isolation caused by the social stigma surrounding disability in John Charles MCQuaid’s Ireland. She was told and believed that Stuart was God’s punishment for ‘marrying out’.
When Stuart was 7 she aqueised and tried to leave him in Lota but they was so distressed on the journey home that my grandfather turned the car around.
Stuart came home.
They adapted their house ( as we have done). My mother was sent to boarding school to make friends ( which she did) and they created a home that worked and cared for their child ( as we have done).
They set up support groups for other parents who chose to care for their children at home- unheard of in 1950’s Ireland.
They fought for the needs of their son , as I do for my daughter.
Stuart died aged 25 of pneumonia. Lil was very advanced in her illness and I don’t know if she was aware of his death.
The perception is that the death of a child is the worst thing to happen to a parent and it is, but given what we know now of places like Lota Mor.. The fear of the child you kept from death for 25 years being left with strangers can be worse.
I hope she knew that he had died with his father and sister beside him and his two nieces playing by the shoreline nearby. Lil died 6 months later.
Lil spent her life caring and fighting for her child’s right’s like me and many others- so far from an air head, she was a warrior something I would not have ever been aware of were I not to be on the same journey.
Stuart with Emelie