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.