Invisible People

At times, when I've seen mentally handicapped people (see the Naming Errol post for more on this) I've avoided making eye contact. I don't feel good about this fact, and I didn't even know I was doing it until Errol came into my life. That's when I realized my responses to people with mental disabilities. Errol is changing this bad habit of mine, and when I see people like Errol I gaze right at them and try to catch their eye. Thanks to Errol, I see them in a different light.

I don't think I'm the only one who shuns the disabled (in fact, I think it's fairly normal behavior), and I'm trying to figure out why we humans do it. Perhaps we wince at imperfection. Perhaps we don't want to see what we are only a few chromosomes away from, ourselves. Perhaps we have worked so hard to evolve as a species, that it is hard to see those who seem to be swimming against the evolutionary tide. Maybe we are just scared of any difference or deviation from the norm.

The way we treat disabled folks is a sign of how civilized (or uncivilized) we are. The way we care for them says a lot about how far we have evolved as a civilization. Errol has civilized me, and allowed me to see more of this beautifully diverse world.

The Diagnosis

We parked and ran to the ambulance where they were unloading our boy. We strode into the hospital behind Errol and his litter of attendants. As we approached the Neo-Natal Intensive Care Unit (NICU) we stopped just long enough so that Errol's grandparents, uncles, and aunts could meet him. We were terrified that it might be their only meeting. We had no idea what Errol's problem was, but we knew it was dire.
They wheeled Errol back into the NICU and asked us to wait for the pediatric cardiologist who would talk to us about his fate. I was imagining the worst possible diagnosis (two days to live, hopeless case, vegetable for life, no chance, say goodbye) and was nervous as a cat as we waited for the doctor. The doctor arrived and ushered Cary and I into a consultation room. I was ready for the death sentence.

Heart Party

Today was Errol’s first heart party. The doctors at Brenner Children’s Hospital are as kind as they are talented and every year they throw a Christmas Heart Party for their patients. We gathered in a hospital conference room (which beats the hell out of the PICU) for a magic show, ice cream, candy, and Santa. Errol was passed from nurse to nurse and hooted (his happy sound) as he was admired by all the wonderful healers who have changed, dressed, medicated, intubated, catheterized, held, loved, and nursed him back to life. You would think he might hold a grudge, but he didn’t throw up on one of them, and seemed to only have good feelings towards them as they held him in their loving arms.

Amongst his many medical ailments, Errol has severe eye problems; strabismus nystagmus and cortical visual impairment, and can’t see very well. I’m not sure of the science behind it, but I think that because fluorescent bulbs flash on and off very rapidly, it stimulates some part of his brain which makes him very happy. Whatever the reason, Errol is gaga for fluorescent lights, and usually starts hooting as soon as we set foot in a school (daily), hospital (too often), or fluorescent light store (rarely). Today, the lights combined with some of his favorite nurses put him on a two hour hootathon.

Despite all the hooting, Errol’s enjoyment of the party might have been exceeded by his brother Owen-which is just fine. As the brother of a little boy who has spent much of his life in the hospital, Owen has been through hell. We’ve spent so much energy worrying over Errol that we probably haven’t put nearly enough thought into the burden that Errol’s life has placed on Owen-not that we could have done much about it at the time. The arrival of any second child usually rends the special bond that a first child has with their parent, but a child with extraordinary needs, like Errol, puts an amazing pressure on their older sibling. Owen had to deal with a mama in the hospital just about full time (she was offered the employees discount at the cafeteria, knew the parking lot attendants on a first name basis, and was asked for medical advice by all sorts of people), two nervous and tired parents, being constantly shuffled around to friends and relatives – which is all good and fine in small doses, but not as a daily occurrence, a general sense of abandonment, and Daddy’s famous home cooking! The bottom line is that Owen was and is pissed, and deserved this party about (though not quite as much) as the actual patients themselves, and certainly more that the off duty doctors that floated through and picked a cookie or two off the desert table.

This was also Owen’s first brush with Santa – who, by the way, practically shares a name with Satan (change two letters) and wears red – hello! This Santa was not much of a step up from Lucifer. He had a bad attitude, a hint of peppermint schnapps on his breath, and a serious need to go on the South Pole diet (yes, Santa is supposed to be large, but this version would need a couple of extra reindeer and a double wide sleigh). He also had an overblown sense of responsibility to his job. Cary asked him, out of hearing of the kids, if it was fun to play Santa, and he replied “I don’t play!” Yeah, and the Pope don’t wear a funny hat. We left the party at the same time as Santa who kept getting a bit lost. I think Owen still believes in Santa (he has every reason to-the guy brings fabulous parting gifts), but he must have lost a little faith in Santa’s sense of direction – if he can’t find the parking garage, how the hell is he going to deliver all those packages to 27127. Thank god for UPS.

Even with our GPS needing Santa, it was magical to spend those hours in the embrace of our heart family. I had never been to such a diverse party. There were people from every race, class, and background you could imagine. Though we all came from different places, we were all brought together by the amazing doctors who gave our children the gift of life. We are truly lucky to live at this time in history when all our loved ones could be saved (not one of them would have survived a year, a century ago) by these medical magicians.

School

We thought that Errol would be homebound until he was at least six or seven-maybe longer. Our world seemed to be narrowing, our future darkening, but then we learned about the Children’s Center.

Errol started school at the Children’s Center, a school for children with special needs, about a month ago, at age 8 months. We drop him every morning around 9:00 and pick him back up around 1:30, Monday through Friday. In those short hours and in just one month of school, the Children’s Center has changed Errol’s life dramatically. When he started school he couldn’t hold his head up at all, he couldn’t focus, he was not very vocal, and he had very weak muscle tone. In short, although eight months old, he seemed like a newborn. Thanks to his school, today, Errol can sit up in a chair for half an hour (he even likes it. I think it’s the first thing he’s ever been proud of.), he can hold a steady gaze, he hoots non-stop, and is getting stronger and stronger. He is a child transformed, and we have the Children’s Center to thank for it.

I’ve spent thousands of hours in scores of schools, and the Children’s Center is, by far, the best of them all. The teachers are very demanding of the kids (it’s not just a matter of learning math, it’s a matter of walking and talking), and just as loving. They are quick to celebrate each little step the kids take, and quick to ask for the next step - the perfect mixture of love and hope. I am eager to arrive, and sad to leave, and while I’m there, I often get a little weepy over the life the school gives to so many children and their families.

In his classroom, Errol has three loving teachers, Anne, Paula, and Audrey. We could ask for no more loving and dedicated teachers. Errol shares his happy classroom with five other children who all have special needs. Besides his teachers, Errol gets occupational therapy, physical therapy, speech therapy, and vision therapy, and on Monday and Wednesday (my favorite day), it’s music therapy time. His school is so wonderful, that the family of one of Errol’s classmates moved here from Virginia, and another from Athens, Georgia.

Errol is a different person because of his school, and his future is much, much brighter than it was before. His school is so amazing, and has changed his life so profoundly that I often wonder what our world would be like if everyone was as fortunate as Errol to get such a beautiful place to grow.

Happy Thanksgiving

Errol loves Owen. Owen loves Errol. We all love everybody. Errol's life is getting so much better in so many ways. We are beginning to have expectations again (a good and a bad thing, but certainly better than hoplessness). These are rich times with our boys. We have never had more to be thankful for. Gobble! Gobble!

Day One

Errol was admitted to the High Point Regional Hospital at age one hour. His mother had only briefly held him, nursed him, and cried over him. Now, in the nurse’s car, I was on the way to the hospital with Errol - fighting for his life. Cary was recovering from a grueling delivery at the birth center. They would not let her leave for four hours. We didn’t know what was wrong with Errol, only that he was blue and getting worse.

We raced the block to the hospital. I ran to admissions to prove that I had insurance and give them our vital details. The nurse rushed in to admit Errol (when a doctor or nurse runs, you know you are in trouble). All the while I was hoping for the best, thinking obsessively about little Errol who had not yet had the strength to cry.

I got out of admissions and up to the top floor where Errol was being attended to by a team of nurses. At this point little Errol had a onesie on (the one we thought we’d take him home in – expectations can be our greatest enemy), a little hat, and some socks. The nurse was administering oxygen through a blower that was propped near his little head. I rushed up and they told me that they weren’t sure what was wrong but that they were concerned about his oxygen saturation level. Monitors had been attached to his chest and hands and machines binged and flashed out a 75. What did it mean? 75 is not so great in a high school class, was he near failing? I didn’t know. I asked. The nurse said that she wanted his numbers to be around 80, but that he needed to stay above 70 for sure. She seemed seasoned and competent, but there was uncertainty and concern in her voice - I was worried.

I helplessly watched Errol and focused all my attention on the numbers which flashed over and over (an OCD nightmare adding to this larger nightmare). The numbers weren’t holding steady and were easing down; 75, 74, 70, back to 75, 74, 74, 44 (surely a misread), 74, 74, 73, back to 75 (thank god), then down, 74, 74, 73, 72 (now consistently), 71, then back to 75, then over again. I was becoming crazy on the numbers. I wanted Errol, I wanted him healthy, I wanted his mother with me. This was not supposed to happen.

The nurse walked over and turned knobs on the oxygen and his number (whatever they meant) would go back up for a while, 79, 79, 78, 79, then slowly decline, 78, 77, 76. Poor little Errol didn’t know what was happening (at least he didn’t know it wasn’t supposed to be like this; trauma, struggle, pain. This was all he knew. It was normal, but it had to hurt) 73, 72, 71. He had just crossed to this side of life and now he was slipping back, too soon.

As his numbers sank, so did my hope. There was nothing I could do other than obsess (at least I'm good at that). I held his little blue hand tightly. He didn’t know me. What could I do for him.
I felt awful about it, but I was feeling emotionally aloof. I didn't know how attached to get to this little boy. Was he going to leave us? Was he going to die? Should I commit myself emotionally to a baby who was about to die? I felt horrible about these emotions, but they were how I was feeling.

His numbers dropped past 70 and then nurse put a nasal canula on him (a tube that forces oxygen up into the nostrils). Little baby Errol responded with higher numbers, but he was struggling. We had been about an hour in the hospital. The nasal canula seemed like the answer, but after a half an hour of relief, it too failed to sustain our Errol. The nurse just had one trick left up her sleeve. They put Errol in an oxygen tent which supplied him with top shelf oxygen. This worked too, but it’s effects were only temporary. Because of the tent I was no longer able to hold Errol, and took to pacing violently around the nursery as I watched his monitors like a hawk, and waited for his mother to save the day.

My son was dying. I asked the nurse for her opinion (again). She was clearly concerned. I asked her if there was anything we could do. She called the doctor. I paced, Errol’s numbers dropped and his blueness increased. Cary was in the birthing center exhausted, beside herself, and being held captive with stories about “Errol’s alright, this is not that unusual,” anything to keep her from leaving where she had just given birth.

Dr. Jedlica, the pediatrician, came in and went straight to Errol. She looked concerned. She knew something was wrong, but she didn’t know what it was, and so didn’t know how to treat him. We could both see we were losing him. Something in me softened. I reached under the tent, held Errol's hand tightly and made the connection to him, the committment, win or lose, I loved him and held him for dear life.

A hospital is supposed to save you. As long as you can get to a hospital you will be alright. You will make it. A lot of my beliefs about how life works were being tested, and I was starting to lose my faith in medicine quickly. Here in the 21st century, surrounded with expensive machinery, a good nurse, and an excellent doctor, we didn’t have a whole lot better idea about how to save my child than a stone age farmer in Papua New Guinea would. The doctor did what we all do when we don’t know what to do. She made a phone call.

Luckily she was able to call Brenner Children’s Hospital, just a half hour up the road in Winston-Salem. It’s one of the top Children’s hospitals in the US. They have more equipment and know how than most countries in the world have. Surely they could save him. If they couldn’t, no one could. She called for the Brenner transport team and had a pediatric cardiologist on the line giving her advice about what to do for Errol. What she would have to do was to put a line in (an IV) and do it fast. The doctors would need access to his veins for medicine and labs.

It’s uncomfortable to see anyone cut on another person, but it was unspeakably hard to watch her trying in vain (sorry) to find an access point on tiny Errol.

Dr. Jedlica tried and tried over and over again. Errol was in pain, but hardly had the oxygen to produce any sound from his silent wails. I watched through the glass window. I'm not religious, but I pleaded for Errol's life. "Please let him live." A cry into the great unknown. I was frantic and in tears. Through the glass I could see the doctor struggling to find access through Errol's belly button that had two hours before been attached to his mother. It was a ghastly sight.

I kept asking the nervous nurses when the Brenner's team was going to come. They made phone calls and kept saying, "soon, soon." Errol's numbers kept dropping and he was surely going to die if nothing changed quickly.

After Errol and I had been in the hospital for a few hours, Cary walked in - she had given birth about two hours before following an all natural twelve hour labor. She wanted to see her boy. I took her to the window onto Errol's room and explained all I could. We held each other and sobbed and sobbed. We couldn't hold our boy, and we couldn't do anything to help him. We felt completely powerless. We held each other.

The transport team was still on its way. They had apparently been routed to Statesville to a dire emergency. We were in limbo as the clocks ticked and the machines pinged away.

Finally, about 8:00 the Brenner nurses strode in, deliberate, but not rushed, all business. I've never been more glad to see anyone in my entire life. There was a respiratory specialist (Bev) and an IV specialist (Marsha). If they couldn't stabilize our Errol, no one could. The High Point nurses and doctors moved away for the experts. Cary and I were exhausted, tearful, confused, but mostly relieved that the cavalry had arrived. Bev and Marsha got right down to work as Bev tried to stabilize his breathing and Marsha began trying to find a vein. Marsha tried Errol's arms, legs, feet, hands, and finally his head (with what's called a pic line). Finally they got a line in through his head and could begin to administer a drug called prostaglandins to get his heart working. After another two hours, Errol was stable and we were on our way to Winston-Salem.

You always think of an ambulance going fast, but the pediatric transport ambulances roll very slowly (they have fragile cargo). The drive that took us 20 minutes, ten long hours ago, took about 40 minutes (although it seemd like 40 hours) on the way home. We trailed the ambulance and rolled up to the Baptist Hospital emergency department around 11:00.

Typical

Errol suffers from Rubinstein-Taybi Syndrome, which means, amongst other things, that his IQ is somewhere in the 50s and that he is what most people would call “mentally retarded”.

The constellation of physical disabilities that accompanies RTS is ferocious, but is suffer the right word to describe his mental capacities?

But if Errol could be typical, would I want that for him?

They say that some parents of blind children resist operations that could give their children sight. I’ve always thought that their resistance was selfish and that the parent should do what is best for the child.

If it were suddenly possible, would I have Errol undergo an operation that would increase his IQ by 30 points or so and make him typical?
I love Errol, exactly as he is (Mohawk and all), but what would be best for Errol?

Errol will probably not be tremendously analytical, quick, or abstract in his thinking, but Errol is sweet, lives in the moment, and most importantly is tremendously happy. Errol is exactly what I hope to one day become.

I don’t know how Errol would answer the question, himself, but as for me I would never choose to subtract one ounce of joy from our blissful Errol boy.

PICU

Errol, or "the little man" as we are calling him, is in the PICU (Pediatric Intensive Care Unit) on the eighth day of his life, three days out of his first open heart surgery. You can see he's still got his nasal canula (nose oxygen tube), but his eyes are shining, the blood is already starting to circulate better, and his complexion is getting rosy. The operation has put a gleam in his eyes, but it is also companion to a wistfulness and sadness that he should be too young to know. Of course Errol is grateful just to be alive (he's already been through more of a fight than most people ever go through), but he also wants more of life.
At one week, Errol has already learned a lesson we've tried hard (and mostly successfully) to keep our three year old from learning; life can be rough. Errol will be (and there's good and bad in this) tougher than the rest of us. We mourn the innocence he lost at the moment of his birth, but we are all grateful for his life.

As soon as his operation is over we begin to pester the doctors and nurses to get the tubes out. Usually they take Errol's breathing tube out pretty fast. Then we begin to ask about the catheter. Within a few days, the chest drainage tube goes, and then we work on the IVs (he sometimes has three or four), until finally we are just down to the pulse and oxygen monitors. We don't want to rush things beyond safety, but we know that the less he looks like a robot, the closer he is to health.

Day two

Day Two

It’s 1:42 pm on day two of Errol’s tenuous life. You can see me supporting Errol with my hands as the ventilator keeps him alive. I’m still nervous to hold him (he’s encased in a fragile web of wires and tubes, but I want him to feel human touch and warmth). Cary and I take turns breastfeeding (Cary) and holding (me) Errol. Our son is less than 48 hours old and the doctors have tried a couple of attempts of weaning him off his oxygen. Each time he has plummeted towards death and we’ve watched helplessly as his machines count his oxygen level down to zero. I’ve never felt so helpless. I’ve never desired something (his life) so much. There is nothing I can do. But each time, as the numbers get more grim, the nurses catch him, and bring him back to life.

In the NICU it’s always night. The machines are always flashing and beeping. It’s like a casino in purgatory, where winning gets you back up to life. As sterile as the NICU is, there is a power of healing here that is unrivaled in the history of human kind. Miracles (which are not really miracles at all, but the fruit of thousands upon thousands of trials and errors) occur here every day. Only fabulous wealth could create something as amazingly complex and grand as the medical advancement we find ourselves in the midst of. Twenty years ago, Errol would be dead. We feel so lucky to be alive.

We take shifts laying hands on Errol, with someone touching him night and day. His life is out of our hands right now. All we can do is hope there is a tomorrow.

Day four

Midnight on day four. Errol is on a web of machines here in the Neo-natal Intensive Care Unit (NICU). There is a nasal canula helping him breath. There are IV lines going into each of his limbs. There are oxygen and heart sensors all over his chest and neck and there are pulse meters on his toes. He looks more robot than human, but it is his only chance at survival. Dr. Hines will perform surgery tomorrow and give Errol a chance at life.

Hospital

Hospital sweet hospital. It's a bad sign when you are offered the employee discount in the hospital snack bar. It had been about a month when Errol's mother was offered her first employee discount. It was disconcerting when people began to ask me for directions in the labyrinthine hospital. It was even more scary when I could give them. One day on an elevator an anesthesiologist asked me if I was a resident. I asked him if I really looked that tired. Neither meaning of the word resident was very comforting. There was even one family we heard of that had their mail delivered to the hospital on a daily basis.

The hospital never felt like home to us, but it was the first place Errol lived. He had an extended family of nurses, doctors, technicians, therapists and assistants. He was surrounded by people whose whole job was to keep him alive.

Before Errol's birth I was always saddened when the hospital helicopter flew overhead. I thought of it as another damaged person; another tragedy. And while that's sometimes the case, now when the helicopter sweeps past, I think of it as a phoenix, offering someone a chance at life.

Although the hospital saved Errol's life, after our weeks there, I've never been so glad to get out of a place alive.

Errol Grinning

If I were to create the ideal person I would give them the ability to live in the moment. Because Errol suffers from Rubinstein-Taybi syndrome he is unable to live anywhere but precisely in the present.

In order to survive we humans are programmed to think outside of the moment; to reflect on the past and to plan into the future. But this very survival mechanism takes us away from the perfect present and keeps us constantly elsewhere. Errol would not survive in the wild (not that anyone under 21 would) but because of his very inability to think ahead or behind, he is able to live exactly in this wonderful moment. He already has the very thing I most desire into he world; peaceful happiness, and he shares it with all those who are lucky enough to know him.

Birth

In a certain sense we all start dying as soon as we are born, but with the birth of our son, Errol Milner Clifford, death came to take him immediately.

The first sound a healthy newborn makes is a loud cry. From the moment of his delivery we waited for this sharp wail of life. It did not come. The midwife patted his back to force the cry. It did not come. The nurse suctioned his lungs. It did not come. The midwife gave him oxygen. The cry did not come.

Through our tears of joy and exhaustion and excitement we realized that something was wrong with our child. He would not cry. Something was keeping him from this world. Something was terribly wrong.

This was not the arrival we had anticipated. Nothing is guaranteed in life, but we had assumed that the prenatal yoga, vitamins, sobriety, child birthing classes, and good humor we kept would protect us from danger, fear, death, this.

After the heat lamp failed to increase his pulse rate and after the oxygen mask was unable to sustain his breathing we rushed to the hospital ten minutes away. Errol was fading from the new life he had just begun.