I’m a single parent of a syndrome child. He weighed less than five pounds when he was born; he was premature. He was very light. The Buddha’s bodies are composed of light, so we called him Kaya. It was a Bob Marley song too, although that had a different meaning!
He has quite a rare syndrome called Cornelia de Lange. It’s a chromosome defect and mild brain damage. According to one doctor there is usually an external cooperative cause, usually something to do with poisoning, but that’s a mild part of it I think. Geshe Legden, who was our teacher here way back when, told us when he was only two months in his mother’s womb that this child was coming with some problems.
We went to see him to have a divination done about whether it was safe or not to have a home birth, and it was basically a yes or no question – I thought. He asked us another question, then did the divination again, asked us another question, and checked the divination again. He did this about 10 or 12 times and then told us this child was coming with heavy karmic obscurations, to put it in Tibetan terminology. It was pretty impressive – I mean, when you’re two months old in the womb you’re not much bigger than a peanut.
We were told later by another Tibetan doctor lama, Khijo Rinpoche, when we were getting a healing done, that he thought it was interference by a landlord spirit.
There are a lot of symptoms. He’s very small in stature and he’s got locked elbows; there are about two hundred-odd factors that can conglomerate under that syndrome. In the early days it was balance and coordination that were his main drawback and slow area; he didn’t really walk until he was 3 or 4. Now it’s speech; he literally has trouble getting his tongue around words. You can talk to him and tell him just about anything and he’ll understand.
He’s quite an intriguing little character. He’s incredibly astute in observation, like when he’s in the gompa or in the kitchen and dining area here at Chenrezig Institute. But he literally has trouble regurgitating information, and it’s hard to get out of him what he knows and sees because he really struggles with articulation and enunciation.
He just turned 18 but developmentally he’s much younger, maybe 12 or 14. In some areas he’s lucky to be 4 or 5; he’s got almost no abstract mentality: time, money and mathematics and these sorts of things mean nothing to him. From a Dharma perspective he’s ancient; he’s got incredible perspective.
He understands about reincarnation and the continuity of consciousness and life. He sort of got the picture when my mother died. He shrugged and said, “Oh well, better next life with new eyes and new legs,” because she was going blind and her legs were giving up on her. He’s very philosophical and incredibly wise in some ways. When his step-brother was having girlfriend troubles, he was on the phone to him in Japan, and Kaya said, “Just get another one!”
He lives at Chenrezig with me. I’ve been a single parent for 10 years. His mother lives nearby and he sees her weekly. We go to teachings and pujas and around the stupa and prayer wheels, and we cook for Geshe Tashi Tsering twice a week. He’s got blessing cords from almost every high lama he’s ever met. He’s met His Holiness two times now.
He’s very, very good at blessing his food before he eats. He remembers it every time. Sometimes I’m already eating and he’ll put his hands together and say, “OM AH HUM, OM AH HUM, OM AH HUM.”
He’s naturally very gentle and peaceful. He won’t hurt even ants and we’ve taught him to be careful with other living things in the house. I enforce that and encourage him, and he seems to know why. We live here in the bush in Australia, so my house is almost a zoo: we’ve got lizards and geckos and ants and snakes, bush turkeys, iguanas and all sorts of things that are passing by the house or passing through the house.
With his syndrome, if he gets hurt or stressed or dehydrated in any way, he goes into seizures. I think he’s well aware of his own mortality and his own fragility, and he knows he’s not a normal child; we talk about that as well. He knows he’s just turned 18, and a lot of other 18-year-olds are leaving home and going to university and having girlfriends and stuff like that.
He’s a phenomenally happy child – I mean staggeringly happy. I’d say in 95% of his waking hours and even most of his sleep he’s laughing and happy. He laughs in his sleep and I walk into his room asking what he’s laughing at, and he’s still asleep. He’s just remembering something from the daytime and laughing about it.
But I think not being able to express himself verbally drives him nuts sometimes. He’ll be trying to tell me something for a while. He’s got a bit of an obsessive streak in him, too, so he’ll lock onto something. For instance, he was trying to tell me something recently, and after five days of trying I finally got it. That’s frustrating for him, and that’s very obvious sometimes. Apart from that he seems to know he’s different and that’s his lot in life.
Perhaps when he’s 25 or 26 he might be able to live in a sheltered house that’s got other handicapped adults looking after each other with carers. That’s up to him, though, whether he wants to live away, and I wouldn’t block that phase of his development if he could do it, and if it was safe and cool. For the moment he’ll be near his mother for his whole life, and his step-brother and sister.
As a single man I paid a lot of lip service to Dharma, but there was no real-life situation I couldn’t walk away from. All the lip service of doing for others, patience, loving-kindness and tolerance – it was a bit of blah-blah as a single person, because if it became too much of a hassle or hard work, then see you later.
But this is a real-life situation, and if I didn’t put up with it he’d have died, and that’s it. It really was a life or death situation. He’s definitely put me on the spot of putting my money where my mouth is, and he’s given me a lot of patience and love. The main thing he’s given me is a real situation of being able to take care of another person before myself.
Rinpoche told Jacie Keeley that sometimes it’s better to take care of one sentient being physically than an entire universe philosophically.
That’s basically my approach. There’s a great verse in Guru Puja that says, “Even if I must remain for an eon in the fiery hells of Avici even for the sake of one sentient being.” I think if you can do it for one, then it becomes much more realistic that you can do it for anyone.Tags: parenting