Last Friday night was like a dream for your little sister. She left the house smiling from ear to ear but she came home totally in a dreamlike state after going to a One Direction concert with Alana. Rory, you know how much she loves One Direction and seeing them live totally left her in a trance.
I remembered when you were little and we were in Ireland I brought the two of you to a show in Dublin, Kathleen must have been 4 so that would have made you 6. It was a children’s production and she loved the little boy who played the lead and sang his little heart out. She kept looking at his face in the program as we drove home. After a while I noticed you stopped smiling back at her. When we got home the program “disappeared” and I later found it in your room. I laugh now thinking how you were a little jealous that someone else was going to steal her heart.
The dream would have been complete for her on Friday night if you had been there.
The heart in your name is there because she always wrote your name that way. You always had her heart.
Every red head boy I see reminds me of Rory
The child on West 30th between Fifth and Madison
Standing with his parents was eerily familiar
A kind, kind face and red hair, tousled
I stared and stared again
I’m sure his parents
Thought me strange
They were visiting New York and
A stranger was staring at their son
Outside their hotel.
The boy in the swimming pool last summer
who was him from behind, definitely
Same tall stature, white skin, red head
And in the water too, he looked so like him
Then he turned around.
Sad moments when I glimpse him
And wonder what might have been
No, what should have been.
Death gathered up our Rory and swept him away
But I see him every day.
– Niall O’Dowd
Don’t we tell our children to wash their hands all the time…
It now seems some doctors and nurses have to be told to do this according to the New York Times. We know that infections can be passed along from individual to individual. It’s sad to think that hospitals now have to put incentives in place to ensure that their staff do this..
This is another area of common sense that we took for granted was happening in hospitals…people die from infection…Sepsis is an overwhelming response by the immune system to infection…
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.