THOSE SIGNS THEY SEND US
Pulling The Strings From The Other Side

My younger sister, Kerry, was recently offered a significant promotion at work. She joked when she applied that, after all the years of being a subordinate, she couldn’t really imagine being an “ordinate.” When she was actually offered the position of Head of Nursing Staffing at UCLA Medical Center’s Santa Monica Hospital and Ronald Reagan Hospital in Westwood, she found herself overwhelmed and repeatedly crying.   I’ll circle back to this. 

Kerry began working as a nursing staffer at Santa Monica Hospital in 2010.  There are total of thirteen staffers for both hospitals and they are responsible for making sure the patients in the 780 beds are served by the precise number of nurses mandated by law and within the Center’s budget.

In late 2016, Kerry’s youngest son, David, tragically died in Oakland.  He was 24 and a recent grad of UC Berkeley with a dual major in cognitive and computer science.   David was an avid volleyball player who helped his Santa Monica High School team win the California CIF championship.   He was also immensely passionate about music; a virtuoso on the clarinet he picked up in the second grade and more recently intrigued by the energy and creativity of electronic music.  David was loved by all. 

This was not Kerry’s and her husband, Denny’s, first walk into this dark valley.   In 1986 they were living in Oakland while Denny attended law school at Cal Berkeley.  After welcoming their firstborn and the life-changing joy and wonder that comes during that first month of new life, their healthy newborn son, Riley Marsden, died of SIDS the night he turned four weeks old.

The loss of one child is unimaginable.   Two—there are no words.

Kerry took a leave of absence and, after several months, wanted to return to work.   She couldn’t go back to nurse staffing as it was so challenging and stressful even before losing David, and her grief continued to sap her energy and ability to focus.  Her co-workers and superiors were understanding and gracious and Kerry accepted, as she called it, the “deliciously subordinate” job of administrative assistant to various nursing supervisors. 

A couple of years later, one of Kerry’s superiors encouraged her to apply for the position of Head of Nursing Staffing.  Kerry was simultaneously thrilled to be deemed worthy and terrified of the prospects of taking on the enormous responsibilities and expectations of the job.   And there was the guilt. And more tears.

Kerry told me that she didn’t feel it was “right” to be excited about something or starting down a whole new path…that some-how she would be betraying David.   There would be less time for him.

Many of us understand the complexity of how our grief becomes part of our precious connection to the one we’ve loved so hard, and the anxiety, that seems counter-intuitive, at the prospect of it easing or taking another form.  Kerry was at that crossroads.

The day had come for her to announce her decision, and Kerry felt she was at a breaking point.

And then three things happened.

As Kerry walked out of their house in Santa Monica to head to work, she witnessed the most beautiful sunrise she’d ever seen. 

Then, as she was unlocking the door to her car, she dropped her keys.  Lying next to the keys was a beautiful white feather.

Kerry felt David close, and knew in the depth of her soul the sunrise and feather were clear messages from David.

When she got to her office, she began to clear out her desk.  If her answer was “Yes” she would be moving to another office.   If “No” she would likely return to Santa Monica Hospital as a nursing staffer.  Either way, she’d be moving.

She found an article in the bottom of her drawer that one of her nurse administrators had given her soon after David died. Kerry didn’t remember reading it at the time and confessed, “Even if I did, I was not in a place where I could have absorbed the words much less begin to imagine a day would come when I would even want to participate in life.”

So, it remained in the bottom of that drawer.   Until now.

The photo in the article was compelling, but there was no title, author or publication listed.

Kerry sat down and began to read.

It was instantly obvious this was written by a mother who had lost her son three years earlier.  Daniel was 22 and a recent graduate of Stanford University.  He died of Norse, a rare seizure disorder that inexplicably strikes perfectly healthy people like Daniel with no history of epilepsy.  

This mother’s grief was raw and palpable three years in, just like Kerry’s.  Words leapt from the pages that resonated deeply:

I violated the basic canon of motherhood.  I failed to protect my child.  That my child is dead while I still live defies the natural order.

I love my husband and our two surviving children, but I couldn’t transfer my love for Daniel to them.  It was for him alone…my love for Daniel bruised me. 

Kerry also has two other boys, now young men. 

So unbearable was my occluded heart that I called out to him in desperation one day: ‘What will I do with my love for you, Daniel?”

My eyes were closed in grief when suddenly I seemed to see him before me, his arms bent and lifted upward in supplication…and then he said to me

‘Just love me, Mom.’

‘But where are you?’ I asked?

‘I’m here!’ he answers with frustration.  And then he is gone.

His words unleashed a torrent of tears.   I felt breathless with release.  I could continue to love him.  I would love him in a new way…I will carry this child for the rest of my life…He lives with me forever a young man of 22.  Others will carry him as they move forward in their lives.   He will be with them when they look out at the world with compassion, when they act with determination and kindness, when they are brave enough to contemplate all the things in life that remain unknown.  

I will search for Daniel, but without desperation.   I look for him in others. My search is lifted by his words:

Just love me, Mom. I’m here!

Right then Kerry knew it was OK for her to accept the promotion.  David was doing all he could to encourage her to do so.   The sunrise, the feather, pointing her to this article.  She was not letting David down. She wouldn’t love him any less.  She was making him happy that she could move forward and do even more of her good work helping others.

Kerry picked up the phone and called the Medical Center’s administrator. 

“I accept,”

Kerry has been Head of Nursing Staffing ever since.

A few days later, I sent this story and the article to a dear friend of ours knowing he would appreciate it.  Casey also lost a son several years ago and he and his family have experienced many synchronicities of their own.  He also calls them “God Moments.”

The next day Casey sent Kerry and me an email.  

The article Kerry found in her desk was written by Dr. Nora Wong and appeared in the New York Times.   Check out the date of publication.  Kerry was meant to have that article!

Click here for link to NYT article:     LOVING MY SON, AFTER HIS DEATH

Dr. Wong’s article appeared in the New York Times on December 2, 2016.   

That was the same day David Cline and 35 other precious souls died in the horrific   Ghost Ship Fire  in Oakland.  

Casey also said Kerry’s story reminded him of an intro to an episode of the 2012 TV series, Touch, that starred Kiefer Sutherland and David Mazouz who is now studying at Stanford University.

 If two points are destined to touch,

The Universe will always find a way to make the connection. 

Even when all hope seems lost.

They define who we are,

And who we can become.

Certain ties cannot be broken.

Across space, across time

Across paths we can’t predict.

Nature always finds a way.

Dr. Wong, Daniel and David had a very important message for Kerry, and it arrived right on time. 

[A full copy of Dr.Wong’s article that Kerry found, or more aptly found Kerry, is at the end of this post]

CASEY’S POSTSCRIPT

Dr. Nora Wong is now the Executive Director of The Norse Institute whose mission is to find a cure to the disease that claimed the life of her son, Daniel.  I recently reached out and sent her Kerry’s story.  I thought she should know how her heartfelt article dramatically impacted the life of another grieving mom. Dr. Wong replied that same day.

I am so sorry to learn of the tragic deaths of David and Riley, and of your son, Jimmy.

I am always amazed at the magical connections and messages provided by our loved ones who are no longer on earth. I’m so glad my article played a small, positive role in Kerry’s decision to embark on a new journey in life.

Please let Kerry and her sister and author, Kimberly, know that there is another coincidence. When Daniel was in the ICU for seventy-nine days, his bedside nurses were the ones who sustained us. We are still in contact with them. As Head of Nursing Staffing, Kerry is helping terrified parents like my husband and me. 

Here is Dr. Wong’s bio from a recent public appearance.

Before her son, Daniel, died, Nora considered herself a stay-at-home mother. Prior to having children, she earned her Ph.D. in psychology at the University of Michigan and worked in corporate survey research.
Daniel died on December 3, 2013 at the age of 22, just months after graduating from Stanford University. The doctors think he had a rare seizure disorder called new onset refractory status epilepticus or NORSE. With NORSE, healthy people are suddenly struck by out-of-the-blue, prolonged seizures for which there is no remedy. It is a new and evolving medical term for a disorder long observed. There is no known cause or established treatment for NORSE. The outcomes of NORSE are grim: roughly a third of the patients die, about a third survive with significant brain deficits and the rest can recover to baseline, but almost all survivors then have epilepsy for the rest of their lives.

Loving My Son, After His Death

By Nora Wong Ph.D.

I can feel their unasked questions. People wonder how I can still stand, still walk, still laugh. But they don’t ask. You can’t ask that of a mother who has lost her child. My son, Daniel, died three years ago at the age of 22.

When people ask me, “How… are you?” that pause, that inflection, tells me that’s really what they want to know.

I am tempted to tell them that it is I who am lost, not he. I am lost in my search for him, knowing he is nowhere on this earth.  And still, it would not surprise me if he were to appear by my side wearing only his jersey boxers eating a snack at the kitchen counter. At times I can almost smell his warm cheesy breath and his still-boyish sweat. But when I look over my shoulder, he is not there.

My mind invents stories. Daniel is not dead; he is lamenting the performance of his fantasy football team with high school buddies while they wait in line for ice cream at Magic Fountain. He is in his dorm room at Stanford, talking deep into the night with his friends. Daniel is lingering with new friends on the rooftop of his investment film in Boston where he just started working.

“Where are you, Daniel?” I shout the question to the sky when I am strong enough to bear the silence that follows. “Why did you die?” Even that has no real answer. His doctors think Daniel died of new onset refractory status epilepticus, or Norse, a rare seizure disorder in which healthy people with no history of epilepsy suddenly begin to seize uncontrollably. The majority of patients die or survive with significant brain damage. There is no identified cause or established treatment for Norse. This cloud of uncertainty does not obscure what I know: My child is dead.

The instinct to protect one’s offspring runs through mothers of virtually all species. I violated the basic canon of motherhood. I failed to protect my child. That my child is dead while I still live defies the natural order.

I love my husband and our two surviving children, but I couldn’t simply transfer my love for Daniel to them. It was for him alone. And so, for the longest time after his death, my love for Daniel bruised me.

So unbearable was my occluded heart that I called out to him in desperation one day: “What will I do with my love for you, Daniel?”

My eyes were closed in grief when suddenly I seemed to see him before me, his arms bent and lifted upward in supplication. In my mind’s eye, his face was suffused with love and tinged with exasperation, a common look for Daniel.

‘Just love me, Mom.’

‘But where are you?’ I asked?

‘I’m here!’ he answers with frustration.  And then he is gone.

I had not heard his voice since the day before he suddenly fell ill. I spoke to him while he lay unseeing and unmoving in the hospital bed. I told him I loved him. I begged him to speak to me. I begged him to come back to me. He never answered or moved to squeeze my hand. The only flicker from him over his 79 days of hospitalization was a single tear. One day a tear slid from his left eye down his cheek and disappeared beneath his chin.

And now, months after he had died, I felt him before me.

“Just love me, Mom.  I’m here!”

His words unleashed a torrent. I fell forward, my tears streaming. I felt breathless with release. I could continue to love him. I would love him in a new way.

It was harder to do than I expected. I would see him everywhere, in every full moon, in each brilliant day. My spirits would soar. But there were days when a weight in my heart made each breath shallow and every step an effort.

On the worst days I sit before my laptop and pour out my feelings to the only person who can take in my sorrow and remain unbowed. The keyboard is damp when the final refrain leaves my finge1tips: I love you, Daniel, I love you. I miss you. I miss you. And then I press “send.”

Daniel’s friends continue to visit us. It is a pilgrimage of sorts. My heart tightens when I see them. Their presence illuminates our immeasurable loss.

His friends reveal to me how much Daniel meant to them. Now there will be a missing groomsman at the wedding and empty air in the place of a steadfast friend. At the end of one visit, a young man asks, “Recognize this sweater?” I don’t. “It’s Daniel’s,” he explains. I suddenly recognize Daniel’s old cotton sweater stretched to fit his friend. The young man folds forward to touch the sleeves of the sweater, hugging himself. He is tall and blond and athletic. He and Daniel were opposites in looks and temperament, best friends since nursery school.

He had just returned from Moscow where he was working. “I wear this when I travel,” he says, touching the arm of the sweater again. “It’s so soft.”

I encourage Daniel’s friends to tell me about their work and their plans for the future. At first they are self­conscious, and their voices are tender. They don’t want to hurt me with their future plans when there is no future for Daniel. But as they speak of the things they will do and the places they will go, their excitement breaks free. I smile into the glow of their unlined, earnest faces and I feel my son. I think they feel him too. For a moment we are all reunited.

I will carry this child for the rest of my life. He lives within me, forever a young man of 22. Others will carry him as they move forward in their lives. He will be with them when they look out to the world with compassion, when they act with determination and kindness, when they are brave enough to contemplate all the things in life that remain unknown.

I still search for him, but without desperation. I look for him in others. My search is lifted by his words: “Just love me. I’m here.”

Dedication

This post is dedicated in loving memory of Riley Marsden Cline, Daniel Wong, David Cline and all of those who perished in the Ghost Ship fire.