Saturday, November 24, 2007

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.



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.


lina said...

Thank you Helen - for a heart warming story about amazing people.
Richard sounds like the kind of person I would have loved to meet.
I wish as a mom I will always have the kind of courage that Richard's mom so obviously had.

wendy said...

Oh my...crying in my tea on a Saturday morning. That is an amazing story. Richard's mother was way ahead of her time...and how lucky for Richard!

Mieke said...

What a beautiful sentence: "he lived loved."
All that matters in such simple words.

Belinda said...

Wow, what an amazing, amazing story of valuing and honouring a life.

My favourite line though, was: "as if his family had lassooed his soul and pulled it back from heaven's shore." Where inside do you find such sentences? Your gift for words is great--and we are blessed to enjoy it.

Anonymous said...

This story brought tears to my eyes but they are happy tears not sad ones. I know how that family felt about Richard because that's how I feel about my four year old grandson. My heart bursts with pride for him and I want to share him with the world.And who knows...someday maybe the world will know him!

~ Teresa ~ said...

What a beautiful story and a celebration of a life. Thank you for sharing.

anne said...

Thank you, Dave!

Nephesh said...

You give me goosebumps...and tears. You also open up that emotional tidal wave for love for my son, too. Thank you for that. Please thank Helen for us, too.

Anjie (mom to Adam, 5) said...

Wow! I'm in tears too. That was a beautiful story.

L said...

I am weeping Dave, because the comparison of Richard's life with those who I know went into Lennox Castle (although I doubt there is little difference with any institution) is poles apart.

The bravery of Richard's mother to stand against the prejudice of the medical profession, no wonder there was such love in that man's life.

Thank you Dave.

Anonymous said...

What a wonderful post, Dave. I love your way with words and the feeling behind them.

I'm so glad that there are other families who feel the same about their loved ones the way I feel about my son, Cason. I think he hung the moon and he is the absolute joy of my life. People like Richard and Cason can teach others so, so much.

Thank you so much for sharing Richard's life with us.

Peggy, mommy to Cason, 3 years old

dlw920 said...

Helen and Dave, thanks for sharing this wonderful story. How wonderful that this family knew that Richard's life was reason to celebrate and rejoice everyday.

Al Dente said...

Dave, what a wonderful story!

shiva said...

So... am i the only person a bit freaked out by this guy's... "special" role in his family - treated, seemingly, almost as some sort of good luck charm or talisman?

It reminds me of medieval or tribal societies and their beliefs about disabled people being some sort of "messengers from the gods", thus shunting them against their will into these "sacred" roles, rather than just treating them as members of the community like any other.

I mean, not having a birthday (presumably when everyone else in the house did)? Being the first guest in every new house, as if it was some sort of good luck ritual (and presumably, whether or not he even wanted to)?

Dancing with the bride at every wedding, yet presumably no thought ever given to if he wanted to marry or have a relationship himself? There's the saying "always the bridesmaid, never the bride", but this takes it to the extreme - it almost feels like a ritual constructed *because* the family "knew" he would never find someone himself.

Undoubtedly, it was a better life than he would have had in an institution, and i'm sure his family did love him... but it still seems like separation, "specialness", rather than just acceptance. I wouldn't have wanted that sort of life.

Anonymous said...

I'd be pretty sure that you can take it at face value. This sounds like a family that are sensitive and sensible. Richard had his place in his family - who are we to tease out malice that isn't there? Let it go, and stop looking for offence where none exists. Save the bitterness for when there really is a problem. The family can be however they want to be. It's ok to be joyful. Adn it's ok to be special - I bet everyone in that family was special.

Louis said...

Thank you for sharing this story with us, Dave.
Though you made me cry at work ;)

I wish more people, with or without physical or mental 'differences', could know the kind of love that this man knew.

What a wonderful family. What a wonderful story. Thank you.

Shannon **Gabi's Mom** said...

Richard sounded like the light of many lives. If only the parents of today, where there is so much hope for our children with Down syndrome, can have the heart to take a chance on loving with all their heart as Richard's mom did.

amy flege said...

wow that is wonderful! i have a first cousin who also has Ds and is 43. Our family is large and we too treat my cousin like royalty!! we are so lucky to be touched by his presence.
thanks for sharing that story!

Tara Marie said...

Dave, you have an incredible gift of telling a story.....Thank you for sharing that gift with the world.

I believe life is how you look at it....and I am living my life like that Mother....cherishing my children and treating them like they are the most precious gift in the world.

I would have loved to meet the Mother and son.....and my heart is so full of joy to know that their whole extended family celebrated Richards life also!!!!

Nicole said...

Thanks to Helen for allowing you to share Richard with your readers. Thank you Dave for allowing us to celebrate life and to remember to love!

Tammy and Parker said...

You have just told the story of my son, Parker.

Well, except for being sick only one time part. And we are still praying for the blessing of having him here for at least 64 years.

But the love, lassoing his soul and pulling it back from heaven, the joy, and the utter gratefulness of having him in our family. THAT is Parker's story.

Lisa Lily's mom said...

What a beautiful story!!! Thanks for sharing this! My daughter Lily also has Down syndrome and was only given a 50/50 chance of surviving due to a serious complication in utero and here she is at 3 years of age - showing the world that she is a fighter!!! She is my everything and has changed my world for the better just like I am sure Richard's family felt as well!