When you first become a parent, the ferocious, primal love that you feel for your child will take you by surprise.
The over-protectiveness of it all evolves into a loving but more rational approach as your child grows up and learns to stand on their own two feet.
For parents of young people with special needs, supporting their children on their lifelong journey becomes even more of a priority.
I cannot imagine a worse pain than losing your child. And when this is coupled with the fact that the death was completely avoidable, the ripping apart of your heart must take place every day.
For Sara Ryan, mum of Connor Sparrowhank (nicknamed Laughing Boy, or LB), fighting for her son’s rights has become a way of surviving this horror, struggling to embed a legacy of dignity for all in the NHS. Because every patient’s life is worth fighting for, and no death is laughing matter.
LB died because the people who were supposed to look after him were not bothered enough, structured enough, well-resourced enough, to do their job properly. So they ignored his multiple epilepsy attacks, and, like in a game of Russian roulette, the inevitable happened and he drowned in the bath.
I have never met the family. But as a special needs mum, I can imagine what the journey so far would have entailed, before the unnecessary loss hit them in their guts, leaving a wound that would bleed forever.
Everyone matters, for one person can touch so many lives. Someone else’s child, friend, soulmate. Everyone wants to live to turn their own dreams into reality, to enjoy the beauty of trees whizzing past you from the top deck of a bus, to run through a park feeling weightless, to share chocolate with a friend. LB and his family have been robbed of the beauty of ordinary life.
I wish the family strength for the journey ahead, for the questions that they will ask themselves about trivial decisions that could have had a huge impact in their lives, and for the soul destroying crushing knowledge that the system that was supposed to care for our flesh and blood is nothing but caring.
What sort of world do we inhabit? A world where budgets systematically come before people and where service users with learning disabilities are considered dispensable pawns, not people.
His life will never be forgotten in so many ways.