Errol Milner Clifford 2006-2009

Errol Milner Clifford was born with a significant heart defect and a cognitive disability that prevented him from walking or talking. As we grieved the child we had anticipated, Errol’s full-bodied smile and irrepressible laugh turned our sorrow into joy, and taught us that many of the best things in life are unexpected. Inspired by Errol’s delightful spirit, friends, family, and neighbors rallied to support our family’s significant emotional, physical, and financial needs, through countless acts of selfless generosity. When Errol’s courageous heart finally failed him on December 23, 2009 we were left numb with grief. In these dark hours we listen hopefully for the echoes of Errol’s brilliant laugh. This blog is the story (starting from present and working back to Errol's birth) of the life and times of the amazing Errol Clifford.

Monday, November 30, 2009


A nasty virus has hit Errol hard and he's been admitted to Duke Hospital. Errol is seriously dehydrated and the docs are reviving him with a tsunami of fluids.

Errol's been very sick for over a week now, slowly descending towards oblivion, and we can't wait to have our sweet little smiling boy back.

Wednesday, November 18, 2009

Errol's Progress Report

When we first stepped foot in the Children's Center, almost exactly three years ago, Errol was six months old, recently diagnosed as profoundly disabled, and we were feeling desperate and alone. Mike Britt, the school's director, promised us that The Children's Center would become a second home for Errol who would say his first words and take his first steps there. A tiny light began to flicker.

Over these years, we have watched in awe as Errol and his schoolmates have made great strides! Every little hard won step is celebrated!

Errol has spent three splendid years at The Children's Center, surrounded by love and buoyed by support. We're not on a perfect trajectory to health and happiness (the light flickers on, then dims), but thanks to his school and its courageous little students, there is always a light at the end of the tunnel. Errol is not walking or talking yet, but he's making progress, and most importantly, he is loved.

Thursday, November 12, 2009

Starting the race

Errol came home from Duke Hospital on two different antibiotics that have to be administered intravenously every eight hours. Not to mention his other meds, his food, and his nightly pedicure! OOOOOOOOOOOOOO.

When Cary was pregnant with Owen we couldn’t wait for her to have the baby. The birth seemed like the goal, later we realized that birth was the starting line, not the finish.

We were desperate to get out of Duke Hospital with Errol, but as soon as we were discharged we realized that we were about to start another race. With this race, not only were we entered in a decathlon, we were wearing ice skates.

The events in the Errol decathlon include the iv flush, the diaper relay, the downhill sleep, and the ever popular baby lifting. It’s hard work.

The thing they left out of the future parents of disabled kids PowerPoint presentation was that we would have to be far more than just parents. We are Errol’s nurse, accountant, social worker, advocate, doctor, physical therapist, personal trainer, and beautician.

It's a non-stop job and it doesn’t pay very well...unless love is your currency. And that makes us rich beyond compare.

Monday, November 09, 2009


Errol has turned many of our expectations of life on their head.
But expectations are ephemeral, always just out ahead of you like the road in the night just beyond your headlights. They can't be counted on.

In other words...As the poet Naomi Shihab Nye put so very beautifully:

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.

Oh, how Errol has taught us what kindness is!

...Here is the whole poem


Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.

Naomi Shihab Nye
from The Words Under the Words: Selected Poems

Saturday, November 07, 2009

Hoops of Steel

There are a great many people to thank for Seeds of Love for Errol. We’ve been rescued from an absolute abyss, and if it hadn’t been for Team Errol (the folks who organized Seeds of Love), our friends, and family, we can’t imagine what might have happened to us. We live our days full of gratitude for the gifts we have received, and we hold our community tightly. As Polonius admonished Laertes in Hamlet, “Those friends thou hast and their adoption tried Grapple them to thy soul with hoops of steel.”

Click on the photograph below to view a slideshow of the Seeds of Love for Errol dinner!

Friday, November 06, 2009

Getting to Duke

When your life is topsy-turvy, strange things can make you happy, Last week, we actually celebrated when Errol was diagnosed as having had a seizure. After all, Errol’s seizure wouldn’t leave any long-term negative effects, and now that it was over, Errol could get back to the business of running the country. The only problem was that the underlying cause of the seizure remained undiagnosed.

Last Tuesday was a beautiful day and I took Errol, Owen, and Owen’s beloved best friend Roman to the zoo. The zoo animals were active and alert in the crisp fall air, but throughout our safari, Errol slipped further and further from us. First his laugh left, then his smile drifted away, and finally he just sort of checked out and slumped down in his wheelchair.

While Owen and Roman were feeding the giraffes (they really were, and it’s much safer than feeding the lions) I was preoccupied with the Little Man. By the time we got back home, Errol was fading, and although he was completely exhausted, he lay in his crib moaning and wouldn’t fall asleep.

We knew something was terribly wrong, so Cary bundled Errol up and rushed him off to visit his amazing pediatrician. Errol was whisked into a room, and Dr. Hunsinger took his vitals, examined him, and told Cary that Errol was running out of oxygen. She made a call to the hospital and asked them if we could see a cardiologist. She was told the clinic was closed and that we would have to go back to the emergency room (where the week before, residents had been sent us home with an incorrect flu diagnosis).

But we didn’t really have any options, so Cary rushed Errol to the ER and I dropped Owen (poor resilient boy has learned to live with a certain amount of uncertainty) with his grandparents and raced over to join Errol and Cary. Again, we saw resident after resident who asked us the same basic questions and then diagnosed the flu, “It’s really going around!”

We asked to see a cardiologist, and finally one materialized. I told the cardiologist that Errol’s pediatrician thought he might have a pulmonary embolism or some kind of infection. “That’s impossible!” she replied.

Without giving Errol a physical exam the cardiologist informed us (as we had been told the week before) that Errol had the flu.

“You are saying that his heart is fine?” I asked. “That there is nothing cardiac going on with Errol?”

“That’s right.” She said. “His heart's fine. He just has the flu. Let’s keep him here overnight and watch him.”

“What are you going to watch him for?” Cary asked.

“Well,” the doctor said, “We just want to watch his sats and take his vitals to make sure he’s ok.”

“Errol is sick!” His mother proclaimed, “He doesn’t need to be kept up all night by nurses taking his vitals, and alarms going off.”

“Well, we can just turn his alarms off.” the doctor said.

“But, if you turn off the alarms, you won’t be watching him! I thought that was the whole reason you were keeping him here.”

“Well,” The Cardiologist stammered, “If you are just worried about losing some sleep-“

Cary is one of the kindest, sweetest people in the world. She is not worried about losing sleep. For four months she spent almost every single sleepless night in the hospital to keep her child alive. Suffering through needless alarms, beeps, buzzes, dropped breakfast trays, midnight blood draws, thoughtless nurses who want to chat at three a.m.! She has suffered years of insomnia from worrying about Errol. She gets up at 1:30 every Saturday morning so she can bake until six a.m. when she goes to the farmer’s market to sells baked goods so she can pay off our child’s enormous medical bills. I won’t quote what Cary said to our ex-doctor, but suffice to say, we left the emergency room and headed home to “get some sleep.”

The next evening, Errol was doing worse, and although it was long after office hours, Dr. Hunsinger told us to come to her office. When we got there, Dr. Hunsinger was beside herself. She knew that Errol didn’t have the flu. She was sure that Errol’s problem was with his heart. She diagnosed endocarditis and was furious that the cardiologists at Baptist Hospital were not doing anything for Errol. But what options did we have?

By now it was seven at night and her office was long closed. She feared for Errol’s health. There was one last resort. An old friend and medical school classmate happens to be a world-class pediatric cardiologist at Duke Hospital. She picked up the phone. As she described Errol’s situation, he grew concerned. Could Cary and Errol come to his clinic first thing in the morning?

The next morning, the brilliant and compassionate Dr. Ronald J. Kanter, saw Errol, ran a few test Baptist hadn’t run, and quickly diagnosed endocarditis. (If you saw Errol and read the symptoms of endocarditis you would too!) We were admitted to Duke Hospital and began the six-week regimen of antibiotics we are now faithfully administering at home.

Errol is getting better each day and we have switched his cardiac care to Duke Hospital.

Thursday, November 05, 2009


Errol is home now and feeling grand. But it's been a long climb out of the sickness that sent us to Duke.

Here's how it happened...

Last Monday I got a call at work to come pick Errol up from school. He had passed out. As soon as I laid eyes on Errol I knew that something was very wrong. He was white as a sheet, listless, and staring blankly into space. There was nothing of the smiling, cooing, laughing Errol. I put Errol right into the car and headed straight to Dr. Hunsinger’s office. As I drove, Errol slumped further over into his car seat. His eyes were open, but they were blank and unresponsive.

I tried to rouse Errol by opening the car windows and letting the cold air blow on him. But as the air blew across his blonde hair, Errol just sat hunched over in his seat. Barely there.

Out on the interstate, I was driving 85 miles an hour trying to get to the doctor before it was too late. I kept looking over my shoulder. The less life Errol showed, the faster I drove. I watched Errol like a hawk. Errol hunched further over.

The open windows weren’t rousing Errol, so I honked the horn to try to startle him awake. Then I turned around and yelled in my meanest teacher voice,



“Errol. Wake up!”

He didn’t budge.

I looked over my shoulder for signs of life. I swerved between the lanes. Errol remained in his slump. I panicked. I thought about turning around and driving to the emergency room. My mind and my heart were racing. I didn’t know what to do and I couldn't tell if, down under his big coat, he was even breathing.

I screeched to a stop on the shoulder and ran around the car to check on Errol. I tapped him on the cheek and then felt for his pulse. It was there! I breathed. I looked down at Errol. I hurried back behind the wheel and pushed on.

As we burst through the door of the doctor’s office, the nurses took one look at Errol and rushed us straight back to Dr. Hunsinger.

Dr. Hunsinger quickly examined Errol and asked lots of questions. As I described the details of Errol’s condition, the doctor quickly diagnosed a seizure.

The seizure, which would leave Errol with no permanent damage, was caused, we soon deduced, by Errol's meds (better and more expensive meds that the insurance would not cover would not have caused seizures, but the cheap ones they gave us caused his seizure!)

As we finished the exam, Errol began to regain his color and even let out an uh-oh or two. He was feeling better and the news was, all things considered, better than we had feared. We headed for home.

Tragedy had been averted. I had thought I was going to lose my boy, but now he was going to be just fine. Or so it seemed…

Tuesday, November 03, 2009

Errol is Headed Home!!!!!!

Errol is coming home from Duke today! Hooooooooooooooray!

Here is Errol in front of the fish tank at Duke Hospital

And here he is in the Duke cafeteria getting the good news! Yeah Errol!

Monday, November 02, 2009

PICCin and Grinnin

The Duke doctors are going to put a
PICC line in Errol's arm tomorrow (a sort of a semi-permanent iv) so that Errol can continue his regimen of antibiotics at home. We are thrilled that Errol will be home by week end, but are daunted by being tethered to his daily doses of antibiotics. We can't seem to move ahead and crisis is starting to seem routine. Seeing Errol's smiling face at home will make it all better.

The story of why Errol is now at Duke Hospital coming soon...