BY BRIAN O’KEEFE
I was alone backstage with a star ….again. “I wasn’t sure I would like it, but I love it,” whispered a real live movie star sitting on her fictional law practice’s fake staircase. It was Viola Davis, known as a film actress from various supporting roles, telling me privately about her new impression of working on a television series, “How to Get Away With Murder “, the cement icing on the Shondaland lockdown that will now be known as TGIT Thursday.

But my head was somewhere else. More than 2,500 miles away (2,450 in American Airlines miles) Somewhere real close to my very own birth… my beginning in an old brick hospital in Mineola, New York. Just a couple floors straight above where my mother gave birth to me,…and every one of my siblings, my nephew Daniel was struggling in the fight of his three year old life.

On a ventilator and a feeding tube he was fighting a nasty enterovirus that hyper-hurt his already struggling body still adjusting to God’s Earth and plan for him. He is disabled by something akin to Muscular Dystrophy, Koolen -de Vries Syndrome, caused by terrible unexplained damage to chromosome 17 and the core of his being…and development. The chromosome missing a chunk that develops his muscles and a bevy of abilities now disabled. He sat up for the first time at 1 year old. Walked for the first time a year later—but has responded to physical therapy magnificently. He still hasn’t been able to form words, but the world is still ahead of him.

I call Daniel, the youngest grandchild of our family, the centre of our Universe. And my plea for a prayer circle on Facebook got the most response I have ever gotten, even more “likes” than my selfie with Kim Kardashian three years ago.

Daniel’s crisis, ever quick, was in a hospital that my siblings know all too well…and where our beloved mother visited more than a dozen times in some sort of diabetes blood sugar crisis…sometimes even putting her into a coma. Her rampant disobedient blood sugar was unique even for a Type 1 Diabetic since toddlerhood….and sadly it weakened her when an intern (ironically, in a different hospital) gave her the wrong medication that led to her five month demise, so powerfully tragic physically , mentally, spiritually…too cataclysmic for words to even describe any further.

And oh, how she would just adore Daniel. I can hear her coo cooing now….as….I….type …this. And its hard to stay composed. For a second. How she loved babies.

Daniel’s crisis in a painful, deep way, brought all of us back to our biggest Mommy crisis. Watching the Oxygen levels…..blood pressure…heart beat. We know it so well, we don’t even have to ask which number on the monitor…is which. And the occasional slide below an 02 level of 95 towards the 80’s in an almost Pavlovian way gets us out of the chair towards the nurse. My father could only stay 60 seconds. He always has ants in his pants and cant sit still…but this I think was too much for him to see.

But something beautiful grew out of this horrible situation. My mother and her grace, her sense of structured calm, and love blanketed Daniel’s ICU room for a week. Bernadette was there. Not in person, of course. But, in the form of my three sisters….Katie, Jane and Daniel’s mother, Mary Bridget. One attendant even thought Jane was his mother. Daniel’s other grandmother Marjorie also raced across country to be a comfort to all.

Mary Bridget, my youngest sister, who is raising this disabled child with a syndrome that wasn’t even named and fully identified when he was born has quickly used Facebook and Google to start a revolution of support and information to families around the world. She’s traveled across the country more than once to get the word out about Koolen-de Vries —in addition to her full time teaching job.

And true to form, there is that “something special”…what I call the O’Leary love of children, with cousins and aunts and uncles dropping by. I don’t think Jane left the ICU room for 24 hours straight, during Daniel’s darkest day. Each of my sisters have so many of my mother’s skills….which makes me incredibly proud. I think I am objective since I will never be a mother myself. Even some old emotional wounds between some of us softly healed a little bit as we realized that we were all there for eachother. And little Daniel.

Daniel literally lights up a room…with his smile …gushing bubbles of love…literally out of his mouth…accompanied by an adorable hand-clap….an act of happiness with a sound that has a special thump to it…like the thump of the fully enriched hearts around him.

The love and appreciation of children that my siblings, cousins and I have is an infectious and beautiful gift that our O’Leary grandparents unknowingly passed down to us, because none of us ever really met them. I think there had to be a lot of love in The O’Leary house after all their strife and pain of losing both their parents so young.

The song “Danny Boy” has always moved me so.  It’s sung at Irish funerals even if the person is not named Daniel.  Some of my earliest memories are my father singing it like an opera singer. It’s a song that made every one cry but not really know the words or what the song was about. Mary Bridget once said: ”Don’t sing that about Daniel…it is a funeral song.”

But there’s no pity party for this three year old Daniel.  He’s a walking smile from head to toe. Even his hair has a wavy smile in its natural tussle. All of the O’Keefe (and O’Leary) nieces and nephews without exception would step aside and agree that Daniel is the happiest child of their gene-aration.

How beautiful our boy Daniel is and how magnificent that his challenges have helped my family get closer.  He’s been a bridge over the river of family squabbles, differences and wrinkles.

He’s no Danny Boy…. But our love..  Our heart…. Our Boy, Daniel.