November 23, 2009

Some Days

Today isn’t over by a long shot but already it has been a full day of catastrophes. Aspirin usually takes care of some of the headache and neck and shoulder pain but it has become a daily occurrence.

Ignoring that so Segev’s diaper leaked and he wet his sweat pants. The diapers are too small but they don’t make any bigger ones. After changing his pants five minutes went by and he had some very loose stools, a result of the ketogenic diet. So now these training pants are headed for the wash and Segev needs a shower because it’s a mess. Giving him a shower is very very difficult and some day i’ll write what that is like as well but not today.

After the shower he was ok for about an hour and a half and then started complaining. Every day around six he starts and it lasts for a few hours. At some point it always devolves to screaming from pain but today it was less than previously. Nevertheless holding him is very very difficult; he is very strong and throws him self about with the seeming intention of breaking anything his legs will reach. After a half an hour of wrestling him i have to put him down, it is simply too much effort to hold him. Despite his complaining and crying and while i must continually treat his stomach with massage, vibration, pressure and heat he must start to eat. The ketogenic diet is strict and already I know that his fourth and last meal won’t start until 12 o’clock at night. I start to give him, making sure to hold the g-tube in my fingers tightly because his seizures and wild flailing can do severe damage. The tube pops out and the food sprays all over his pants etc. I start cleaning it and after a while can continue with the first syringe of food.

During a break he coughs and i reach for the suction tube and operated the machine; as i pull the long suction tube towards me it catches on the mug of his liquid food and spills it all over the rug, oil and vitamins immediately take a permanent home in the carpet. How much food did i give him? One syringe. Good. So now I have to make new food and vitamins calculating everything as 2/3 value. I start cleaning the rug, the vacuum cleaner, the drawers of Segev’s equipment storage. He is crying a little less.

After the cleanup and new food and another twenty minutes of back gnarling treatment he is still complaining but less. I decide to go the route of the gas, that is to try and remove as much gas from his stomach as possible. Success! I give him the rest of his food. Elapsed time for the meal 75 minutes.

October 23, 2009

What Segev can't do

He cannot sit up by himself

He can’t eat by himself

He can’t sing, he can’t dance, he can’t walk, run or even stand

He can’t scratch his head or his arm or anywhere else

He can’t speak so he can’t tell you how he feels, what he thinks, what he likes or dislikes

He can’t see, which is enough said……..

He can’t turn over in bed

He can’t call out for help

He can’t brush his teeth

He can’t have a bowel movement by himself

He can’t tell me to leave him alone (hah! he wouldn’t get it anyway)

He doesn’t know what colours are

He can’t taste food

He can’t blow his nose

He can’t wiggle his toes

He can’t tell me his woes

He can’t reposition himself to be more comfortable

He can’t press on his stomach when it hurts

He can’t play with other children

He can’t get angry or laugh

He can’t enjoy the heat of the sun for long

He can’t bear cold at all, his toes turn purple

He can’t understand the world around him, for good and for bad

He can’t interact, make mistakes, win, lose and he can’t choose.

February 04, 2009

Water rising

When he is truly sick, each successive hour with Segev becomes more oppressive, claustrophobic. The house is in disarray, my disorganized self at its best. Relief does not come with sleep, only for Segev. The worry is catastrophic and the need to maintain treatment, concentration, knowledge and dedication, absolute. Worry could bring the house down.

Yes, I want to escape it. But then that is the definition of claustrophobia isn't? The feeling comes from being in a situation and you cannot get out, you have no room to breath. Or more precisely, there are too many things in the space. But I continue breathing, to make a show as if i am OK and that it affects me only a little. For the sake of the other children, an  example, my parents, anyone who is dear. But always it feels that even the casual observer can plainly see...but no one sees. Or, and no there is no self-pity in this statement, no one seems to care. Actually the truth is elsewhere; no one can understand. I prop myself up with thinking, "no one is interested in understanding". Damn, that self-pity-potty again! I'm writing myself into a corner here. Almost nowhere to go. Segev needs me.