August 31, 2010

May be difficult to follow the train of thought here

Segev is speaking;"aahhuuuuhuhaahhhhaaauhhhhhhhooehhwhuuuuuuuuaaaahhhhhhhhhuhhhhhhunhhhh". I'm sorry, I'm certain that looks terrible on the page but that is his typical run-on sentence. He speaks about twice a week on average. Mostly he is silent. When he does speak like that he cocks his head up and to the side, the long moan flowing out easily. His head goes down again as the moan fades only to strengthen once again and this reminds me of the rise and fall of a siren, a real siren, the like of which I have only had to endure on one occasion.

Where I live, a siren means imminent danger, seriously, as in missiles are on their way. That's how it was in '06 when I huddled with Segev on the floor and felt the walls vibrate as a rocket slammed into the ground two thousand meters away. There is a bomb shelter in the yard but you only have thirty seconds to make it. No chance unless you want to be caught out in the open when one hits. 
Some people say, move! If you really want it it's possible! You know what? I will actually consider it (I hear Brandon in Canada is nice). 

But consider this: how many years has it taken for me to build up trusting relationships with THE ESTABLISHMENT, to get Segev to where he is today? How can I know that such a dramatic move won't result in more harm than good? I don't, I know. But I don't like these either or scenarios. I choose to believe that sometimes you make the best of a bad situation because of the uncertainty. I choose to believe that once you make a certain decision you may just have to live with the consequences. I believe that sometimes, for some troubling situations, there is no solution.
From uncertainty it may seem like a short stroll to indecisiveness and from there to a dangerous lack of confidence to some, but I assure you it also leads to understanding.

Warzone: rules of engagement. 

Coming to terms with and understanding the nature of the problem that your child faces. Uncertainty 99%, certainty 1%. This is why you need to pace yourself. On the other hand certain decision must be made instantly. You will learn to either abide life-challenging decisions or not, which may determine whether your child will live or not. Hopefully these moments will be few and far between.

Congratulations. You have made it: your son is now three years old,  or your daughter four. You need a wheelchair now. It is no longer enough, the car-seats, the holding, the pillows and cushions. So now you have your medical committees. The local council's committee to determine that your son is eligible for transportation to the rehabilitation center. 
The ministry of social welfare has a health committee which must determine that your son is eligible for afternoon sessions at the rehabilitation center. 
The health ministry must determine if your son really needs a wheelchair and requires you to meet with their health committee. 
The national insurance ministry must determine the degree of disability in order to authorize financial assistance. 
The ministry of transportation will put you through a committee to determine eligibility of assistance  for purchasing the van you'll need to carry around the wheelchair. 
The ministry of education's medical review board will determine whether or not your child is eligible for special education at a rehabilitation center. Each committee requires Segev's presence.
Have you got all that? Now you can look to see if there really is a suitable place to take care of your child for a few hours a day. Nurse, doctor, hydrotherapist, physiotherapist, music therapy, animal therapy, the volunteers and the assistants. Do you have it all? To some problems there is a solution.

When I finally found such a place there was not space for Segev, quota met. So I had to wait one year. When Segev finally did get into the center it turned out to be a mixed blessing. Segev was categorized as the highest risk child in the center. I sat down with the doctor and we wrote out protocol's for all of Segev's conditions, without which they wouldn't accept him. 
After how many minutes that Segev appears to have stopped breathing but where tonus is still present may the staff call an ambulance without first notifying me? (Otherwise Segev would be rushed to hospital several times a day).
If Segev's oxygen level drops to X the following actions will be taken.  
Segev may not be put on to his back for more than one minute. And so on and so forth. 

In the end out of the possibility of staying six days a week, from 08:30 until 6 pm, Segev averaged* two days a week from 8.30 till 2pm and another one day that he made it to the center but within two hours I had to go get him. I only sent him when he was in good shape but as has always been the case his condition can go from quite fair to catastrophic in 60 minutes. More than once the chaperon called me from the transport van on the way to the center and i rushed out of the house meeting them by the side of the road to take Segev back home.

The committee for the health ministry, in order to get Segev his first wheelchair was the most fun. Across from us sat a woman, a neurologist, a man who was an orthopedic physician and an administrator. I was asked why we thought we needed a wheelchair for Segev. Read the medical assessment, I pointed out. Ahh yes, one said. There was a pause. Suddenly the woman, the neurologist, SPRANG from her chair, crossing the distance between herself and Segev, sitting in his carseat, in one bound and grabbed a hold of Segev's left leg. One hand on his thigh the other around his ankle she began to jerk his leg backward and forward with such violence that the car seat began to teeter on the chair. Segev screamed. 
Does anyone who reads this blog or follows Segev on Facebook still want to know how I was able to put in place the final rivet of absolute, interconfabulated steel-plated resolve into every pro-active decision associated with my son? Then look no further than that "neurologist".

There are problems to which there are no solutions.  

My fingers hurt for several days afterward from clamping them into the chair's armrest and until today it is a mystery how my body was able to instantly drain itself of all blood and restore it without actually losing a drop. 
Literally paralysed from shock i watched the horror unfold until the cold sweat on my palms and the force i was exerting caused my hands to slide dramatically forward off of the armrests.
I fought myself, not to strangle her. What good would I be to Segev in prison? 

"No, no, no the hysterical father overreacted to the examination. The screaming child? Obviously overly sensitive, we have protocol for these things you know."  No not actual statements made, of course, but certainly in the realm of the possible. Why not try? Because Segev sustained no permanent damage and I have better things to do with my time than being vindictive. That woman will either change or not and most likely it will take a child actually sustaining damage from her in order to provide grounds for her removal, if she does not merely get off with a severe reprimand. This is not defeatism, this is reality. 

To some problems the solution, is to move on to the next problem.

*Segev participated in the rehabilitation daycare for a total of one and a half  years, the last time being over four years ago. His condition simply deteriorated to the point that there was no longer an option to send him despite even having a nurse on hand specifically for Segev.

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