‘Lullaby, and good night, you are mother’s delight’

‘Lullaby, and good night, you are mother’s delight.’

This is Jewel’s version of the Brahms lullaby I used to sing to my two children.

The last time I sang it for Rory was on April 1, 2012, the day he died.

Jewel herself was saved from death when a doctor spotted that she was suffering from a life-threatening kidney infection even as the hospital was turning her away for lack of health insurance.

If only another doctor had seen how dangerously ill our son was.

This is our second Mother’s Day without him.

A Cold Rain Keeps Coming

You expected to be sad in the fall. Part of you died each year when the leaves fell from the trees and their branches were bare against the wind and the cold, wintery light. But you knew there would always be the spring, as you knew the river would flow again after it was frozen. When the cold rains kept on and killed the spring, it was as though a young person died for no reason.

Ernest Hemingway, A Moveable Feast

Hemingway

Congratulations to Jim Dwyer, New York Times

JimDwyerHeadshotNov2013Congratulations to Jim Dwyer from The New York Times who has won a prestigious 2012 Sigma Delta Chi Award for excellence in journalism from the Society of Professional Journalists.

Dwyer’s work in highlighting the errors which contributed to Rory’s death has helped us highlight the dangers of sepsis. An illness we did not know about until it killed our son.

This article (http://nyti.ms/MiX1c7) was the first of several that Dwyer wrote about Rory’s case and helped generate much-needed awareness about sepsis.

It is one of the five columns cited by the SPJ in selecting him for the 2012 award in column writing for large circulation newspapers.

New Film Award To Be Named In Honor of Rory Staunton

ablevision logoAbleVision Ireland names new film award after Rory Staunton

AbleVision Ireland has launched the Rory Staunton Memorial award for the winning short film in its inaugural international film festival in Ireland on May 17.

The AbleVision Ireland 2013 Film Festival, which will take place in Drogheda, is a competition for short films and digital media made in partnership with people with intellectual challenges. The festival will feature movies made by – and about – people with intellectual challenges and it has received lots of interest from abroad.

AbleVision decided to honor Rory because of his campaign at school, under the auspices of the Special Olympics, to foster social responsibility and greater respect for people with intellectual disabilities.

He had a thing about the ‘R’ word, and worked hard to make his young friends and schoolmates understand how wrong it is to use the word “retard,” or “retarded,” in a derogatory sense.

Our picture shows some of the film-makers themselves at a reception for AbleVision.

For more information, please visit www.ablevisionireland.com

 

Former Garden School field to be named after Rory Staunton

Jackson Heights AllianceOn Thursday, May 18th, Community Board 3 in Queens voted unanimously to name our latest additional parkland, formerly the Garden School field, after Rory Staunton.
Letters of support were read from Congressman Joseph Crowley, Council member Daniel Dromm, Assemblyman Dendecker, and Borough President Helen Marshal. The Jackson Heights Beautification Group and The Jackson Heights Green Alliance expressed their support for this.

Please click here to read the full story.

We would like to thank everyone in the Jackson Heights community for their generosity in remembering our son Rory.

It was Rory’s dream to keep the Garden School field as open green space for the Jackson Heights community.

The Staunton Family

Rory, You’re Still Making News!

Rory Dr OzOn April 19, 2013 the Dr. Oz Show told Rory’s story. It’s easy to tell the world what a great, fun loving, caring child he was but it is terribly difficult to constantly relive in public those last couple of days.

However, the truth is that Rory never leaves our mind, and the tragedy of those last couple of days are with us hour by hour, minute by minute. It feels like a news reel that is constantly running. Many other parents whose children have died have told us the same thing.

Dr. Oz and his staff were terrific when we recorded the show. They were very respectful of our grief and they are very committed to spreading the word about sepsis.

Click here for a link to the show.

Always take time to smell the flowers…

Rory, 4, with Kathleen, 2.

Rory flowers

Dear Rory

 

Rory Drawing BWRory, we miss your smile, your funny comeback lines, your noise, and the fun… Yes, the glorious fun of spending time with you.

The silence is now deafening. It breaks my heart to see your wonderful dad, your pal, sob from loneliness. He didn’t deserve this tragedy. Your little sister bravely faces it each day.

She’s happy though Rory. She’s in a wonderful new school, the one she secretly talked to you about; OLQM. They won the Basketball Championship this year; we missed you so much that day. She swims, she now “owns” your iPad, and she’s looking forward to a summer of surfing.

Your loss though is a huge void in her life; you shared so much banter together.

I miss you my little man (all 5 feet 9 inches of you). You were my fellow book reader; the book we bought you about Steve Jobs, that you so desperately wanted to read, lies unread. Maybe you met him?

You and I had just been talking a year ago about A Separate Peace by John Knowles. We both disliked the book, but it did get us thinking and talking about friendships. We were best friends, you and I. We kept secrets.

Capt. Sully Sullenberger said he thought your death would bring about a seismic change. It has. New York State has issued new regulations in your name “Rory’s Regulations” so that what happened to you won’t happen to any other child. Friends and politicians have been very helpful in moving this forward; there is a lot of good in this world, we see it every day.

There are some other special things going to happen in the future that we’re excited about, but we can’t talk about them just yet. Just know, we will make you proud.

A lot of bad things happened to you, Rory, in those last precious days of your life. People did not listen to you or to us. Many people and institutions did not do their best by you. This is why you died.

Mahatma Gandhi said, “There is a higher court than courts of justice and that is the court of conscience. It supersedes all other courts.” We will work tirelessly for justice, Rory. Each person, and they know who they are, must now be attending their own courts of conscience.

April 1 is not a day we will ever wish to remember. We love to remember the days you lived and oh, how you lived. Captain Sullenberger, your hero, said you lived a remarkable life.

Niall, your uncle has written many times about you. Jim Dwyer of The New York Times investigated your death and has written some wonderful articles about you and Sepsis. Maureen Dowd also from The New York Times wrote a splendid column.

Many other writers and broadcasters have been moved to tell the world about you, an extraordinary 12-year-old boy with extraordinary dreams.

Your teachers spoke of your kindness, leadership, humor and the sense they got from you that you were going to change the world in some great way. Your loving circle of friends feel they have not only lost a great friend but that they have lost a future president of the United States.

Our families are devastated; you were so special to them. Our friends tear up when they talk about you. You were loved my darling, so loved.

Rory, we’re going to catch this Sepsis thing.

People, come on. No one seemed to know about Sepsis until Rory died but think about this: Sepsis is the largest killer of children in the world. Sepsis affects 26 million people every year and one third die. It is increasing at an annual rate of 8 to 13 percent.

And here’s more. It’s more common than heart attacks and kills far more people than AIDS. We know it strikes with devastating ferocity. And listen up: Sepsis respects no age, race, gender or economic status. We know the cure, we just have to suspect sepsis and treat it immediately. Tell people about sepsis, a simple cut or a scrape is all it takes for infection to set in. Tell people and save lives.

Rory, we made a decision not to have a big family get-together on April 1, the anniversary of the day you cruelly died. We will plant a tree in one of your favorite places and your little cousins Patrick and Fionn Rory (who was born after you left) will help. You would have liked that.

We will walk to the top of the Hill of Tara, the meeting place of the High Kings of Ireland and we will release balloons at Raith na Riogh (the Fort of the Kings) with special messages to you. I hope you see them.

More than anything know that you are so much loved still by everyone. Gilly Cullen created this beautiful portrait in your honor; friends and strangers have done the kindest of acts.

Doctors, good doctors, have worked hard with us for change. People are giving their time fiercely and freely in order to change the world so there won’t be another tragic death like yours.

Tragically Rory, your melody was left unsung in full. You were so looking forward to your life ahead. But you sang a wonderful tune in your 12 short years. We have all learned from your life. We who loved you were part of the melody you were creating. Without you it is hard, but we will continue your song and hope we make you proud.

Torture. As one special person in your life wrote: “It’s as if a Gordian Knot were entwined in an enigma, wrapped in cruelty.” No answer and a lifetime of loss.

Rory Staunton – you were our best 12 years.

Sepsis You Stole His Life But You Will NEVER Steal His Memory

March 17 2013

St. Patrick’s Day 2012 – A Perfect Day

It was a magical day.

Rory, up early, traveled to the city with his friend Cian to spend the morning at the Mayor’s breakfast at Gracie Mansion.

One glance at him as he walked out the door with his dad made me stop in my tracks.

It is now one of my dearest, fondest memories. Rory: tall, handsome and strong; smiling and full of life; enthusiastic and so proud, as always, to be Irish.

St Patrick’s Day offered a day away from the ridiculous and insane homework for his school’s 7th grade class.

We were all breathing easy, very easy.

Ciaran, Kathleen, Rory and I walked up Fifth Avenue as a family. Rory and Kathleen smiling and giggling in the sunshine, smiling with Cian.

I close my eyes now and Rory is there: tall, confident, head high, sun shining, hair blazing, smiling.

Later we drank green shamrock shakes in the park, talking and laughing with our friends, Cian, Oisin, and the O’Sheas. Rory brought Irish chocolate to our beautiful Italian sister, Cynthia.

Later still, at home, we all got cozy, real cozy. We were happy, carefree. It was truly a magical St. Patrick’s Day.

We were all unaware of the insanity and tragedy that lay just weeks ahead.

******

So strong, so wild and brave he was. I’ll mourn his loss too sore,

When thinking that I’ll hear the laugh or springing step no more.

Ah, cure the times and sad the loss, my heart to crucify,

O who will mourn my broken heart? I’ve lost my laughing boy.

– Brendan Behan

 

Liam’s Reading Day – March 7th

Six-year-old Liam Carcione from Cork loved reading and books. He especially liked Roald Dahl and The Goosebumps series. He lived in Cork with his younger sister Rosa, his mom Eibhlís and his dad Jay. His dad was from New York and grew up on Long Island and in Woodside, Queens. Jay and Eibhlís got married in America in 2003 and returned to Ireland where Liam was born in 2005. Rosa followed two years later in April 2007.

Liam died from sepsis on April 2, 2012, just 12 days before his seventh birthday.

Like us, tragedy struck their family in April 2012. Liam contracted chickenpox, a deadly invasive Group A Strep bacterliam_nia entered his body, and he died on April 2 as a result of sepsis.

Like our beloved Rory, Liam died suddenly. In a moment he was gone. Eibhlís describes it like being hit by a tsunami. Sadly, Liam is another young, tragic victim of sepsis. And the Carciones are another family left shattered by a condition they had no knowledge of – until it took their beautiful child.

Thursday, March 7 is World Book Day and in a loving tribute to Liam, his school will rename and celebrate the day as “Lá Liam Leitheoireachta,” or Liam’s Reading Day.

The children from Liam’s school will dress up as characters from a book, there will be a school party and each child will donate a book from home to a library being decorated in Liam’s memory. A library that will be known as “Leabharlann Liam,” or Liam’s Library.

Liam loved books, he came from a family steeped in words – his dad is a journalist and his mom is a writer, teacher and poet.

Liam kept a journal, and in it he wrote that he wanted to be a writer when he grew up and live “0 kilometers from home.”

Kathleen and Rosa have lost two wonderful big brothers. The world has lost two beautiful children.

We didn’t know the Carcione family until after Rory died, but we believe they and their school are an inspiration in remembering a young boy, Liam, who found love and joy in reading.

Join us on March 7 to honor Liam Carcione in “Lá Liam,” or Liam’s Day for World Book Day 2013.