I remember the afternoon of Friday, March 30, 2012, the Friday before Rory died. That was the day after he had been dismissed from the hospital ER room and dismissed by his pediatrician.
Seeing him still so sick, I told Rory that I needed to check him out for meningitis so I shone a light in his eyes; I got him to move his neck. He was so tired that he just let me do what I needed to do and turned back to sleep.
Then I told him I needed to check every part of his body in case there was a bite, which maybe someone had missed. Rory was 12 years old. Like most boys of 12, he was super body-conscious but he nodded yes and proceeded to let his mom check his body to ensure that some little creature hadn’t bitten him and made him sick. We had a good chuckle as we went along.
There was no mark on his body other than the cut he had received when he fell in school. The truth was Rory was already in septic shock, Rory had Sepsis. His dad and I had no idea.
Not one doctor, not one nurse had mentioned the word Sepsis to us … not one.
A recent poll shows that over 70 percent of Americans haven’t heard of Sepsis. This figure is unacceptable particularly when you consider how many Americans die from Sepsis.
Knowledge is power. If I had known about Sepsis, I would have looked for Sepsis.
On Sunday night, July 21st, we closed O’Neill’s in Manhattan. Life as we knew it has changed, but we have many wonderful memories from our times there.
Hillary Clinton, Chuck Schumer, Sully Sullenberger, Bruce Springsteen, Gerry Adams, Enda Kenny. Gabriel Byrne, Fionnuala Flanagan, Daniel Day Lewis, Jerry Seinfeld, all came through our doors as well as many other strangers who became friends, and friends who became” family”. Some of our customers even met their future wives and husbands there.
We will not be far away though. We will still see everyone at Molly Blooms in Queens.
We always told our children to stand up for something they believed in. Rory and Kathleen were at the first Irish Lobby for Immigration Reform meeting in Queens. After many questions they wore their immigration reform t-shirts proudly and together we will all continue to look forward to immigration reform.
Most importantly, because of where life has brought us now, we will fight, with the help of others, to raise awareness and save lives from Sepsis, something we knew nothing about until it tragically killed our 12-year old-son Rory.
Rory and Kathleen have had wonderful moments in O’Neill’s. We brought them there within days of their birth to “show” them off.
Every Saturday after swimming at the YMCA they made their way to O’Neill’s with their cousin Alana. There, as years passed, they rose in the ranks to become self-made bartenders, perfecting the art of mixology (with juices and sodas). If we let ourselves listen, we can still hear their laughter.
First Communions, birthday parties, family and neighborhood events were all celebrated at O’Neill’s, it was a second home, full of treasured memories
For Ciaran, the time has come to move on. It is too difficult to remember these good times knowing that that one special face will no longer be there.
Life as we knew it is no more. Although 12 years remained on our lease, we now know 12 years can be a lifetime.
Last week we escaped from our new reality. Along with family from Ireland (who helped us laugh again after a really tough couple of weeks), we made a trip to Cape Cod, a place where we had never been before with Rory.
Besides the beautiful scenery and slow pace of life; what we found there were wonderful smart young people from all over the world. These international students are working and living in the U.S. for the summer months, savoring the American culture and enjoying life as twenty-something year olds.
Sepsis is now part of our everyday thinking. It killed our son. While we were engaging these fun, intelligent young adults about life, their studies and future, we discovered many of them were contemplating careers in the medical field.
These young people will have it in their power to quickly diagnose and treat sepsis. They will have it in their power to knock this killer on its ass. They are our future. Education will be crucial. We need to ensure that these enthusiastic young adults receive the information they require about sepsis and learn how important early sepsis diagnosis is.
They will need this information regardless of whatever country they choose to work in. Sepsis strikes worldwide, it has no borders; it has no concern for race or social standing. Sepsis kills.
Strong education of sepsis is more crucial now than ever in colleges and in all training institutions as sepsis cases are increasing at an alarming rate.
Sepsis needs a fresh young enemy – our young student population can be just that.
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