Segev does not live in neverland

Segev has not had food in his mouth for over six years now. When I eat something I enjoy I think of Segev. I don't feel guilty, but I do feel the lack of enjoyment that he suffers. With all that he goes through, wouldn't it be nice to have him savor a piece of quality chocolate? Letting that wonderful drug-like brain-body connection work its magic for a few moments as compensation for all that struggle and unpleasantness?

He used to make a weak sucking movement with his mouth when he was hungry but that stopped a few years ago. I put freshly grated lemon peel under his nose and tell him, "this is a lemon Segev". After he vomits I will pour a small spoon of water with a few drops of lemon juice into his mouth. This helps rinse away a little of the taste and also makes him choke momentarily so that he coughs up some of the vomitus that automatically goes into his bronchi.

After I finish giving him his meal through the G-tube he does not have a satisfied demeanor. But after a while he will start complaining, no matter how slowly he received his meal, 200 cc's over a two hour period, because of the air in his stomach. His staccato breathing causes him to gulp air and the G-tube itself allows the passage of fluid and air since the hole has gotten bigger with age but his G-tube is already the largest available.  Often I can pull between 60 cc and 180 cc's of air out of his stomach, several times a day, which would otherwise automatically lead to vomiting.

Most of the time Segev is not fully conscious and so will not react to being touched, stroked or massaged. It used to be that if you touched the bottom of his foot he would automatically enter into a seizure. Now there is almost no reaction of any kind. I could go on and on about Segev in his "dormant" state, which takes up most of the day these days (or years). The medications are a part of that I suppose, and I say suppose since it is very very difficult to see any changes in levels of consciousness with changes to his meds. Also when he was younger the drugs seemed very clearly to make him drowsy for a little while, after which he would become very lively. Making moaning and siren noises, flailing arms occasionally, his head cocking off to one side. 

Very rare now. You have to work to bring him out of his stupor. But there you find the magic, when he is aware of you his eyes light up and he smiles and I feel like a shot of adrenalin has been given to me. Then I hold him and he smiles more, even rasping out a giggle sometimes and makes a special kind of soft moan, something akin to a sigh. I am so thankful for those moments. So thankful that, while he doesn't track movement, only in the last few months has he started to turn his eyes in the direction of people when asked for example, "where is Noa?". 

Or his plush bright yellow Pluto, held off to one side, "Segev, where is Pluto?" And then the cautious yet rough sliding of his eyes towards that side. "Good morning to Segev! Good morning Pluto". Sometimes he will smile to this as though there has been a new kind of awakening. 

I touch his tongue and say to Segev, "this is your tongue, stick it out, like this. Ehhhhhh". And after many many times he was able to very slowly, almost imperceptibly at first, force his tongue out of his mouth. He might be able to do this on cue two or even three times in a day. So things continue to "develop", to change in a way that is not negative and I continue to look for ways, after all these thousands of days of care and concentration (4594 days to be exact) to increase our interaction with Segev, his enjoyment of our company.

I don't hope for the best...I see the best there is at the moment and use that to build to the next. Stringing them together into something very very worthwhile. 

This life of his is so intense with his stuporous moments, highlighting that which threatens his health so much, his seizures and his lungs and his intestines and his own brain. His disinclination to breath and the unconscious silence for days when his lungs have filled to overflowing. But his smile, is absolutely electrifying and I am so thankful for that.