June 28, 2011

As time goes by

My son is not normal.  Far from it. As a matter of fact he is so far from normal that there are few words which can describe him. Nevertheless I try. I want to find the words which can describe such an odd existence of twitches of muscle that build to crescendo and crash like the waves breaking on the shore. And the quiet after the storm of each major seizure. The endless surge of hundreds of thousands of seizures.

The words that I seek are words he will never understand and never be able to utter. But I am perversely content with him being like that because I am a bit of a coward. What if he could speak and tell me how much he is suffering? How much he hates his existence? 

Instead he smiles. Or screams. And he struggles on while I scamper to find words that can do justice to the effort of keeping him comfortable. Walking through the labyrinth like a blind man, certain senses acute but still without the ability to see all that he wants or understands.
And you can understand my need to see those things, can't you? I had to make a choice. As to what kind of father I was going to be. I wish I could say that I am precariously living out part of his life by proxy, but more truthfully, withholding from myself certain luxuries such as companionship because I don't feel capable of fulfilling so many roles; father, husband, caregiver, healer.

When you are broken down to basic elements, finding that smooth circulation of normalcy can be elusive. 

It is a relentless storm, this compromise he has struck with God. On the one hand giving him so much physical strength that he can endure catastrophic amounts of pain and ill health, and heaping on him such a severe form of living that only his strength can allow him to endure and at the ebb of strife and conflict, smile. Breathing, not easily, with difficulty, not understanding as I do, but not being less for it.

I know that what he is missing are the perceptions that we all take for granted. I know the greatness of both his suffering and his happiness, both of them extremes. I can feel on myself the wear and tear and I feel on his body the changes, the wear and the tear. 
But the days have added themselves, just as the myriad convulsions, and they have gone before, leading to this day, today.  And the next day.

I do count the days because I marvel at what has gone before. I don't discount it, throw it away. It is what has made today. Everything has led to today. Today is the day I pay attention, I strive to understand, I exert every effort to maintain what has allowed us to reach this day. Yesterday was no different, tomorrow will be the same.

While words cannot do justice to the effort of maintaining a clear airway, relieving a neck in spasm, a compressed nerve in his back, a storm brewing in his brain, a painful dislocation or his truncated bowels, it isn't necessarily even a way to make sense of it all. But in the recounting it does make the time pass more pleasantly.

June 03, 2011

4 Non Blondes - Spaceman

If i could take off my cynical hat for a moment and believe this is not overly sentimental, I would believe this is one hell of a way to describe the inner experience of my son and other children like him.

On second thought, to hell with that, this is very much what I believe his inner life could be.

Starry night bring me down
'Til I realize the moon
It seems so distant yet I felt it pass
Right through
And I see what I see
A new world is over me
So I'll reach up to the sky
And pretend that I'm a
Spaceman, in another place and time
I guess I'm lookin' for a brand new
Place, is there a better life for me
Subtle wind blow me gone
Let me rest upon your move
I trust I'll end up sleeping
Cradled in my doom
And I feel what I feel
I can't grasp what is not real
So I'll get myself real high
And imagine I'm a
Spaceman, in another place and time
I guess I'm lookin' for a brand new
Place, is there a better life for me
I remember in my mind
They say I'm a daydreamin'
Is it all that It seems
Or am I all the things I'm looking for, yea
So I see what I see, A new world is over me
And I'll reach up to the sky
And pretend that I'm a spaceman
In another place and time
I guess I'm lookin' for a brand new place
I remember living in a different life
Is there a better life for me

Above lyrics held in copyright by respective owners

June 02, 2011

slow train coming

Despite the feeling that things are good, without the sad twinge of feeling 'this is as good as it gets', the continued onslaught of disturbed, stertorous breathing is hard to bear. Segev can breath well, without deficit to his oxygen level, only if his jaw is held up and forward, although occasionally even that isn't enough and his head needs to be held forward as well. But of course his head forward worsens his kyphosis which renders the long term use of this technique prohibitive.

His breathing continues to force air into his stomach at an alarming rate. Venting through his g-tube opening requires the use of several different techniques I have made work through trial and error, at least having several methods to fall back on when one isn't working. This venting has also become a chronic treatment, repeated close to twenty times a day. Often Segev's screaming from pain will not stop until I have successfully emptied out the contents of his stomach in a mug and finally the air explodes out through the feeding tube. On a daily basis one of the more successful techniques, to siphon off the food, as you might gasoline from a car, results in me receiving a mouthful of stomach contents due to that explosive pressure building up.

His complaints and crying have become more frequent from air but the reduced stomach acid due to medication has allowed the hole in his abdominal wall to heal enough that there is only leakage of food via the edges of the g-tube when he is screaming and writhing from the internal pressure.

Once again he has developed a new twist to his seizures. Now, when sufficiently far gone into a major seizure, that is, when it passes a certain threshold, the main seizure will stop and after that a seizure takes hold where he suddenly kicks out his legs and stiffens his whole body like a board. He then paritally relaxes for a few seconds and again it hits him, repeating until I give him diazepam. One major seizure, which when discharged and Segev turning blue from its severity and length, always finishes the electric maelstrom and puts him into a stupor. But now this completely different type of seizure, with its very unusual long pauses, has dovetailed onto the well known though thankfully rare major one.

His smaller seizures, which I have spoken of on several occassions, that normally number in excess of one hundred per day, have become significantly less. So there is this trade off. Or so it seems. His yawning seizures have increased, all the while his drug picture has remained stable. The weather? Hormones? Your guess is as good as mine.

Segev slightly filtered

But as I said in the opening sentence, things feel pretty good. This is because in general Segev is more conscious of his surroundings lately, more communicative (his only volume being, 'shout!') and as always, always is the case, the moment a pain has ceased, or he is picked up, or talked to, or hugged, or massaged he smiles happily. If only it were always that simple.