The Castle

He was born at the wrong time to the right woman. 67 years ago Richard was born with Down Syndrome, his mother was informed moments after his birth that he was a defective child and should be sent to the 'Castle'. She decided then and there that no child of her's would grow up in Lennox Castle, the hospital for disabled children in her area. Doctors, unnerved at her determination to keep her child, young Richard, informed her that because he had Down Syndrome he would die young that his 'fourth birthday' would be his last.

She loved that baby.

Loved him.

When his first birthday approached the family began to wonder about the celebrations. It was decided then and there that Richard's first birthday would go uncelebrated, there would be no party, no cards, no gifts. This was not a result of grief, of denial, of shame. Richard's mom decided that if he didn't have a first birthday - he could never have a last one. If he didn't turn one, then he wouldn't turn two, if he didn't turn two he wouldn't turn three, and if he didn't turn three then he'd not celebrate his last - the fourth. Instead, family celebrations intensified. Christmas and Easter and all the rest became huge family celebrations. More than ever before the family pulled together. Celebrated every life together.

Richard never knew a birthday party.

He never turned one.

His neices and nephews, his great neices and nephews, never even knew how old their uncle was. Richard was hospitalized only once in his life. His family filled his room, many stayed with him through the nights, through the days, caring for him in shifts. Nurses had to constantly ask people to move and give them room to work. Though very ill, Richard pulled through ... as if his family had lassooed his soul and pulled it back from heaven's shore.

It was then that one of the boys took a look at the plastic wristband the hospital had placed around Richard's wrist to see how old his uncle was, no one knew. Because he'd never had a first birthday.

Richard died three years ago. Calculations showed that he'd lived for 64 years. He lived loved. He lived part of a family that celebrated belonging to him. There were "Richard" traditions, at every family wedding, after the dance between bride and groom, Richard took the floor with the bride. With every new home or apartment, Richard was the first overnight guest.

At his funeral, the whole family decided to walk behind the casket. They wanted not to be in cars hidden from view. They wanted to walk, publicly proclaiming their membership in Richard's family. This boy who was to be sent to the castle, lived his life a king. This boy who was to die at 4 had a mother that stole birthdays away and gave celebration to every day. This boy who was to be hidden died - and 5 generations of his family walked behind his coffin.

Crying.

***

I am in Falkirk, just about to start a day's long lecture, and my host Helen, is telling me the story of her husband's uncle Richard. I begged her to let me write his story here on my blog. She graciously gave me permission.

Thank you Helen, for a wonderful day with the staff there at Falkirk. And for the gift of Richard's story.