I have learned a great deal from listening quietly. Ernest Hemingway
Books on grieving are such a mixed bag. The most transformational book I’ve read is, “When Bad Things Happen to Good People.” This book made me stop in my tracks. Many grief books are personal journeys, tender and sad. Some even have absolutely exquisite endings with new beginnings.
Heartfelt. Yes these books are all heartfelt. But, my guess is that many of these books are better appreciated by those who have not lost a child. My guess is that they are better appreciated by those who say the words, “Let’s go home and hug our children tighter,” when some horrible tragedy occurs or “Since 9/11, I will not be far away from my children. “
Now, those words hurt.
I’ve learned that my heart sings a different tune. My counselor Ben says that grief can be compared to a choir, on different days someone different may be singing. Yes, I get that. On different days it is important to listen to the different voices. When someone loses a child, the singing can be very different from day to day.
It is important to able to touch the pain and sit with it. This is calming.
At the end of most sessions, Ben says, “Hang in.” Initially I thought this was insipid. “Hang in? I’m never going to ‘hang in,'” I’d think. In time, I felt the nuance in his voice. “Hang in” is good, yes, I get that. It’s as much as one can expect.
What I have found on this personal journey is that although I long for a life-changing story of grief written by someone else, I am my own story of grief. I think I have learned that with my own grief partners, each offering special words, if I listen, I will find something to help me on my journey.
I think right now listening is the key.
Special Needs is not fun,
Especially when you’re the one,
People can make fun and stare
Like you’re the one with funny hair.
And all you want to do is run
Stop calling them this name.
That doesn’t makes them feel the same.
You know it hurts, I know you do
And you don’t see them doing it to you
They’re very smart, smarter than you.
You just treat them how you want to
We need to get them more rights
The kind that will make them feel alright.
You know it’s true, it’s what we need to do
People with these special needs really do need more rights
Don’t say the r-word, it’s not right
So sign your name, make it right
— By Kathleen Staunton, May 2013
Embodied in his very being was an innate moral compass that compelled him to champion the rights of those less privileged financially, physically, mentally and emotionally. At the age of 9 1/2, Rory was vigilant in his efforts to bring a popular program of Special Olympics New York entitled “Spread the Word to End the Word” to his school and community.
The R-word is the word ‘retard(ed)’. The R-word hurts because it is exclusive. It’s offensive. It’s derogatory. The campaign asks people to pledge to stop saying the R-word as a starting point toward creating more accepting attitudes and communities for all people. Language affects attitudes and attitudes affect actions.
Convincing a school administration that the rights of the mentally challenged were paramount and understand that the label of the “R” word extended far beyond the mentally challenged community was only one of the many miracles Rory manifested in his short life. Rory knew that every person gives us something – that we learn from those who “know” less than us.
After a highly successful campaign that to this day is celebrated at his school and in his community, Rory took the next step and volunteered at Special Olympics New York’s local competitions with his fellow classmates. Children and their parents listened to Rory because his mind was incredibly keen and his heart pure – plus his smile was one from which no one could turn away.
As an award-winning Daniel Webster Debate Team leader, it wasn’t easy to do anything but listen to Rory. And, for each of us who listened, our lives were and remain enriched.
Special Olympics New York was lucky to have Rory as a friend. He left a mark on all of us who knew him.
Judy A. Dorn
Special Olympics New York
New York City Region
The last birthday we spent with him, he turned 12. He was the happiest kid on the planet because we told him he could take his first flying lesson. Rory loved birthdays and we loved celebrating his life.
Kevin Burgoyne, Rory’s 6th grade teacher and debate coach, wrote this poem in his honor. Rory would have been chuffed. This poem captures the essence of our fine young man
Kevin Burgoyne describes how Rory inspired him to write this beautiful poem:
“The rondeau redouble was a perfect choice to capture Rory—it is as rare of a form as he was a boy. I chose to follow some of the rondeau redouble’s structure, but not all of it.
“For example, there is no end rhyme, but I adhered to four lines in each stanza, except for the last stanza like in a rondeau redouble, but I placed the shortened first line on top in the last stanza (against custom). I took out one stanza because his life was sadly cut short.
“Also, I placed the repetition in the first lines of each stanza because it puts the guiding stanza always on top, just like the metaphoric bird in the poem.
“I balanced following the customs of this form with not following its customs because that was Rory.
“He believed in social propriety, yet would not settle for it if it meant injustice.
“He set himself apart and soared as a result.
“There are other little nuances, but when you read this, I hope it reminds you of how remarkable Rory was to us at school.”
‘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.
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
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.
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
On 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
On 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.