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.