August 30, 2010

Prometheus? The beard of Zeus? Mothra!

I've let my beard grow in. I've had some form of beard since about 1990. When I meet with a patient they ask me if everything is alright. In the culture where I live here, growing a full beard often means someone has passed away. People have really had an expression of relief when I tell them, yes everything is fine.

I grew up in three different countries and moved from country to country six times altogether. Cultures differ. Here for example I have so often taken Segev out. Walks in the village, the dogs alongside and if smoke were still alive then you would've seen a cat walking alongside the wheelchair as well. Segev has even joined us on rare occasion to do grocery shopping. I or the children navigating the aisles with his modded-out wheelchair, suction and oxygen in the somehow strangely near-empty supermarket. Did people look at us? I don't know, my attention always firmly on Segev.
I did this so Segev, though not seeing and not understanding, could somehow feel a connection to something different. And most assuredly to show my other children that this is a normal part of life. Don't take for granted the attitude your children have towards an extremely handicapped sibling, it needs cultivating just like anything else.

Admittedly I myself rarely get out of the house, grocery shopping yes, a little work, yes, but I've never in the eighteen years that I am here seen other parents take their severely handicapped children out. You don't see them in the malls, the supermarkets, the movie theater, not in a hotel or at the swimming pool, nor in the city strolling down the street. 

In strong contrast to Holland. There I've often see parents with their severely handicapped children. You sometimes see groups of them. Everything is accessible, people will address you in the street and especially the child, knowing that they are human beings which need to be shown respect more than a regular person since their interaction with the world is already so, so limited. 

I even went to Holland in order to prepare to move my family there because of the fantastic treatment handicapped children receive. I was born there and so it was not too much of a reach. I visited centers there which every major city has, especially to treat children as severe as Segev. Have you ever come at the end of the strenuous work day to a rehabilitation center for extremely handicapped children and seen the caregivers smiling and calm, pleasant and patient, attentive? Yes it's like that there. Also you can be eligible for a "personal yearly budget", which is allocated specifically  for the care and treatment of your child. When I was checking that amount equaled 75,000 euro a year. You are allowed from that budget to hire yourself for three weekly eight hour shifts as your child's caretaker. You get paid to take care of your child since they realize you are not working full time because of your child. 
This is not how it is where i am now. Here the social system makes me eligible to receive help inside the home for the care of Segev when he reaches the age of eighteen. Since before that he is a child and it is only natural that child is taken care of by his parent! Really social services? Really?
As you can guess I never made it to Holland, c'est la vie. The weather there stinks anyway. 

Segev doesn't go out anymore. It's not that the equipment is too heavy, although I have to lift his wheelchair into the back of the van myself. It's not even that I think there is almost zero subliminal intake on Segev's part since he is most often unresponsive to any stimuli. It is because his treatment is constant.

Suctioning happens on average once every ten minutes if he is not deeply asleep. His airway gets blocked from mucous plugs several times a day. He has pharyngomalacia which  often necessitates physically holding his mouth closed so that he can breath. He has tiny seizures that cause him to lock up with his mouth open, arresting his breathing, in excess of fifty times a day. He has small to medium seizures another fifty times a day. His stomach doesn't empty as it should and builds up air which, if not released will cause him to vomit. So he also needs frequent Shiatsu treatment on his pyloric sphincter and pressure on related nerves.
His intestines move irregularly necessitating constant treatment throughout the day, especially since his intestines burst in three places in 2005, requiring cutting away pieces and resulting in scarring of the small intestine.
When his legs suddenly stiffen it's a definite sign he needs to defecate, which can come at any time of day. Often there is no sign but if you are not attentive he will vomit from the buildup of pressure. He cannot do it by himself, requiring pressure applied to the abdomen and stimulation of the sphincter with a flexible probe. 

Giving your child some water through his g-tube in the middle of the mall is one thing, but traveling for a picnic or any other kind of recreational outing with Segev requiring all this attention has simply become impossible. 

Many children reach this stage, where no matter how much effort you are willing to expend the risks of going out in public simply outweigh the benefits. 

You may come to feel that your experience of life has become truncated and you may find yourself isolated, because the severity of it all precludes a normal life. Precludes a large number of people you would normally interact with from being a part of your life. You may find yourself a planet in orbit around the greatest source of light nearby, which is your child. Yes, I sometimes feel like a moth attracted to the flame. That beautiful light, so irresistible. 

I've been singed several times although I'll leave it for others to say just what marks it has left on me. Of course you can see it differently; you can be a little more poetic. How does this sound, "you can see yourself like a form made of clay, baked in your child's furnace of  unrelenting care" ?
I cringe. I laugh. I will see you all tomorrow.

No comments:

Post a Comment