So Jethro went to his neurologist and the test was done. We had to give him a double dose of Coral Hydrate (?) to get him to be even dopy. He fought sleep but eventually we got the EEG done. The reading came back “normal” so we have to just watch him and try and not put our lives on hold waiting for another fit. So its back to baby monitors in his room and we try and sleep normally. He has an appointment at the CAAC (Centre for Augmentative and Alternative Communication) set up on the 8th of May in Pretoria. There we hope to work out some way for him to communicate with us. Thanks to our friend Jaco for starting the process that may lead to him being able to tell us the basics. We will keep this blog updated to keep all informed! Employ your RSS feed readers to check for updates!
love
dunx

I mention Jethro here for the first time. He is my 9-year old son. He is disabled and has a completely unique chromosomal disorder. He is an angel. He doesn’t walk or talk but when he looks into your eyes you feel touched I will say more bout him soon

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29 April 2007

Jethro has his first fit ever. Quite a
shock. Fortunately Jenny was with him because he was restless earlier. He gave
a yell and started shaking. She called me to press the panic button. I did it
and then phoned 082911. ADT security arrived and asked
if they should get 911. Shortly after the ambulance arrived. They put him on O2
and then brought me and Jethro to casualty at Garden City Clinic. Here they
sent J for a CT scan. He has been vomiting so he was drowsy. Now the scan
results reveal thet he has no Brain Injury. He fell at school on Thursday so we
thought it might be that. This means we take him to his neurologist to see if
there is any abnormal brain activity. The worry is that this is the onset of
seizures of one sort or another. Please God it isn’t!

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Everything takes work. If you love somebody you have to cultivate them. It’s the law of the universe. Entropy. Anything left to its own devices will degenerate. Put that together with an innate human propensity towards laziness and you have a potential disaster. And I am not talking about my marriage, in spite of the image here (that’s just to symbolise the eternal love of God…and marriage which is forever) Maybe it is just me.

Funny that the other aspect that is potentially disastrous is that God is invisible and doesn’t always push himself under our noses. He is ok to wait for us while we sneak off to other watering holes and “quench’ our thirst. He works behind the scenes, yes, but it can be too easy to fill our hearts with other stuff at the expense of our relationships with him. I think this particular case is easier to explain because when we are faced with him, he requires of us that we constantly look inwards and doesn’t let us get away with moral, mental, spiritual laziness. Disturbing and uncomfortable. So unless we are pleased to really look at ourselves and be prepared to change in uncomfortable ways, we should probably avoid him. But rather look at myself a bit at a time than to see the whole awful lot holus bolus when I am faced with him one day, as I inevitably will be.

Funny that he is not content to be an incidental pastime. That’s why he says that he wants all of us. “All you heart, mind and strength”. That sounds like everything. I have pictures of myself sort groaning and sweating, willing myself to love him, when actually he just wants us to direct LIVING at him. The rest will follow. Ah, God… such an eccentric character, not so? So out of pace with reality.

I couldn’t be more relieved. Because his commitment is the same as he requires from us. Now THAT’S a good thing. I need somebody to come thru for me.

Well, the title sounds as if I am happy but I am not happy…! Saying goodbye at the airport was ok but then the moment came and J and I were finally on our own. The next three weeks lie like a wasteland before me and I will have to be careful not let it get me down. I really feel sorry for singles but I don’t’ think they feel it like married people who have had time to get used to never being alone.

Being alone is not a bad thing. The problem is that we have to face our own thoughts and all the little splits show up and we find out what really lurks in the silt of our subconscious. Having a totally dependent little disabled boy to look after makes it a bit better and a bit worse. I cannot just decide to get into my car and go and visit somebody because it is a major schlep of getting food and nappies and whatever together. On the other hand at least it is one little link to “normality” which will hopeful protect me from going over the edge.

Preaching today was interesting. It was hard preaching about worship. I had it all prepared but I was not sure that people were ready to hear what I had to say. Plus I am so pathetic myself that I am never sure about the quality and validity of what I have to say until somebody tells me it was ok. There were some who did say it was good, but hey, I even doubt that because I am so insecure. That is what this blog is about. To say those things which I normally wouldn’t let anybody know. The bottom line is that many people actually were able to come and worship with a little more freedom, I think.

double standards
Originally uploaded by dampies.

“Why don’t you just ask me to do what you want me to do? Why all this…nonsense of ‘what should I do about…?’ You know you really want me to take him to school!”

I really regret my tone now. I know why it irritates me that she asks me in that roundabout way. I do not respond well to manipulation. And one person’s manipulation is another man’s diplomacy.

I feel the stitches between my mask and my heart working loose. Later I hate myself. Preparing a talk about spiritual worship; I am a case study for the failure thereof. Some things you just can’t find nice words to say. I am a hypocrite, that’s for sure. I preach each week about this stuff. I encourage and I cajole, finding nice spiritual words to make people obey. Yet my own heart cannot even obey.

But of course this is the rub. There is a great big split in my heart. That is the point, isn’t it? i am split right down the middle. And that is what this journey is about; To heal that split. There is a great big rip right down the fabric of my being. My mind worships submission and my heart worships independence. There is no way to gloss over it… there is, right now, just no way that I will allow myself to be uprooted from the safety of my angerblackhole. My will can do its damndest, but my heart firmly believes that unless I take care of myself there is no way I will survive.

Working out my salvation in fear and trembling… hokaai!

merde
Originally uploaded by dampies.

2005/06/27 8.45 am

“I take it you are there?”

I was mildly annoyed. She knew that I worried. Every morning when she left to take kids to school or to go anywhere for that matter, I said a ritual, yet heartfelt prayer. “The Lord protect you on the road!”. This included protection from “negligence, accident, stupidity, violence, road rage, rape, and anything not covered by these descriptions”.

“Yes, I am sorry my love. We got here just before 6. There was very little traffic on the roads. Must be because of school holidays!”

As usual I tried to swallow my irritation. At the age of 45 it should be over my deep fear of losing those I love. I suppose she is a buffer to me against the chaos of aloneness. I relish being alone when she is coming back but I cannot imagine what it would be like to be without her. It is a bit humiliating to be so dependent on one person (or 3 people — this includes my daughter and my son, who are mini bastions against the void of being alone — little deposits that insure that she will come back again, not matter how much later.)

I hate it when she drives at night. It is not as if I can imagine all the bad things that can happen to her, or something like that. It just makes me uncomfortable. There is a sort of unease that drains the light out of me. A metallic taste of nothingness that instantly pervades my heart. I know it and I want to avoid it at all costs.

Then I remember the three weeks of (unnamed space — identified by absence of anchors — adrift in a inter-stellar anomaly field — thank God for science fiction) that stare me in the gizzard. The Lord only knows what will happen in these 3 weeks. While she is away visiting her sister in Kiwi land, our daughter in tow, I will be home with our disabled son. What qualifies a sweet little seven-year old (cute but mute — and anyhow the personification of all my lifelong struggle against helplessness and redundancy) to hold me back from the lip of the abyss? Truly i will face my nemesis. We will see if Jesus really meets me in the pit of our deepest despair