Jonathan Livingston Elk

The Little Angel has something called Penelope Syndrome, Encephalopathy Status Epilepticus during Slow Sleep (ESES). It is a kind of epilepsy with seizures lasting ~ten hours each night while he sleeps, and only while he sleeps. Seizures of that duration (actually, seizures longer than five minutes) are called “status epilepticus.” They can be fatal and they cause serious and usually-permanent brain damage. In some children with Penelope Syndrome their seizures are physical in nature – thrashing, etc. In our son’s they are not. To watch him sleep you would never know anything aberrant is going on in that head of his. He has silent seizures.

There is no denying he is an electric presence, and not just in his bright, chipper demeanor. He causes electrical items to short out all the time in our house. If he goes near (within half a foot) of a TiVo he causes it to turn itself off. When the stereo in our family room was accessible his near presence would cause it to turn on, turn off, change the station, skip a CD track, etc. We have seen arcs of electricity leap from his chest to the tv. If we hadn’t witnessed all these things over the past three and a half years we wouldn’t believe it. But we saw it every day.  (We’ve since moved most everything out of reach.)

He has a special faculty with animals, although not our deaf dog, naturally. She is only in love with him because he drops about half his food on the floor and she loves to clean up after him! I believe his connection is related to his unusual body electricity. The wild rabbits which abound here are skittish and will scurry off when humans / dogs are near. When the Little Angel runs by, the bunnies stay put. When I run by off they fly to seek cover. I’m a vegetarian so I am no threat! They know he is safe. They know it. Somehow they can tell.

The Little Angel participates in hippotherapy – he receives therapies while riding a horse. (hippo is Greek for horse) He started with weekly Sensory Integration Occupational Therapy (SI-OT) and now also does SLP (Speech Language Pathology), although his is really Communication Therapy as he is unable to speak. We went for his hippo eval when he was two and a half years-old; the horse he rode that day was Shane. I am emphatically not a horse person – I can recognize “brown horse, white horse,” but then I’m out. However the director of the center, the SI-OT therapist, the volunteers, all commented upon the unusual connection betwixt the Little Angel and Shane. Truthfully, I didn’t know – maybe all horses respond the same way to all little boys. ??? I was clueless. But they kept telling me “no, this is remarkable.” Shane fell in love with my son, and my son fell in love with Shane. If Shane were in the pasture when we arrived, the Little Angel would walk to the fence and Shane’s ears would prick up in the Little Angel’s direction. Shane would come right over and put his nose in the Little Angel’s face. Of course the Little Angel would put his finger right up Shane’s nostril ….

A few years later Shane was retired; my Little Angel has ridden other horses, and he loves his other horses. But Shane was his First True Love. Shane knew he loved the input from Shane’s whinnying, his body shaking. The Little Angel would squeal with happy laughter every time Shane did that, and it really appeared they fed off one another: the more the Little Angel giggled the more Shane would whinny. I love that horse. I love Shane for loving my son.


Last summer while visiting Yellowstone National Park we went for a sunset drive. Park visitors were either settled into their campsites, their hotels, or had vacated the Park for their off-site lodging. It was a beautiful, empty drive. I came across a bunch of cars pulled to the sides of the road, so I pulled right over too. My husband and the Little Angel were on the passenger side of the car, and what we saw were a magnificent herd of elk near them. The Little Angel, oblivious to what was going on, was sitting in his carseat, sucking his fingers (he sucks the index and middle fingers of his left hand as his pacifier). He sneezed. An elk about twenty feet away raised its head and its ears shot up and toward us; he ambled over and stuck his head in the rear window, right into the Little Angel’s lap.

My husband and I were paralyzed with everything – excitement and fear, mostly. Would the elk be aggressive? Would the Little Angel poke the elk in the eyeball? Instead, they regarded each other for what felt like an eternity but was really only about twenty seconds. We heard people shouting from the side of the road, their exclamations of shock and delight at what they were seeing.

It was spectacular.

I’m not sure how to put in words my feelings regarding the Little Angel’s special connection with animals. Ultimately I love that for this child from whom so much has been taken, of whom so much is asked, that he has this unique, exceptional gift which uses a language I do not possess.

Jonathan Livingston Elk, my son.

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