The curly kail season has started again. Indeed, a little earlier this year than last year, but right on time with respect to the weather. We had trouble finding some of the ingredients, and even went to another shop to find them. We had old fashioned curly kail hotchpotch this evening.
To start with verse 34, where it says "take up his cross". Did Jesus really use this phrase, and if so, what did it mean to the people hearing it, I asked myself. Then I realized that the land was occupied by the Romans, who already had established a custom to execute people by nailing them on a cross. And yes, the condemed were to carry the vertical cross bar to the place of execution. We should also not forget that just a few verses earlier, we read how Jesus told His disciples that He must suffer many things and be killed.
If you read the next verse wrong, you could conclude that a disciple of Jesus should also be ready to give his/her life for the good cause, and that it is the only way to get eternal life. I wonder if this verse ever has been used to make someone commit suicide in a "holy" war, just like this is done from the Koran with some terrorist who are willing to die in the Jihad. Actually, the word for life used in the greek here is the word "psyche", which is a translation of the Hebrew word "nefesi", which means "soul". Where in this verse the word is usually translated as "life" in the next verse it is translated as "soul".
Actually, verse 36 spoke the strongest to my heart: For what shall it profit a man, if he shall gain the whole world, and lose his own soul? These words again revealed my deeply rooted desire to become famous, to become known to this world, which is probably one of the reasons why I am writing these web pages.
It was rather busy and their were a lot of people waiting, much more than when I got my new passport some weeks ago. There was a little girl running around, and some how from a distance, I already had noticed that there was something special about her. Then when I happened to get closer, because it was almost my turn, I saw that she suffered from Down's syndrome. She was running around and enjoying herself. I talked a little with her. Then also with her father. She was three and half years old, half a year younger than Andy. She was going to a normal day care center, and her parents were considering inclusive education for her. I told her father about our son, and his level of functioning. To some degree, Andy is less far than this girl. I still remembered that I felt some relieve when after Andy was born we made sure that he did at least not suffer from Down's syndrome. This encounter suddenly made me realize that Andy might be more handicapped than some persons suffering from Down's syndrome. Also with Down's syndrome there is a great variation in severness.
When I finally could get my driving license, I suddenly realized that I could have waited another five weeks, till the day of my birthday. But later, I realized that somehow this date is also a nice date, first of all because it is the birthday of my brother. But also because 27 is equal to 33 and 9 is equal to 3*3, and 2001 is dividable by 3.
In the morning there was a speech bij Mrs. T. Defloor who gave us some report about the first results of the research after the articulation which was held in the past years. She examined seven children. This report only dealt with the fonetics (the pronociation of vowels and consonants) and the fonology (the formation of sylables). Some common problems were found, but the results were not yet compared with the other tests that were performed.
Then we had a long lunch with some salades and all kinds of bread. A good time to talk with some of the other parents. After the lunch Prof. H. van der Vlugt gave a presentation of the intelligence tests that were taken from eleven children with the Kabuki syndrome. His most important finding was that the children appeared to score better on the verbal tests than on the non-verbal (performal) tests. He remarked that especially their knowledge of words (compared to their average intelligence) was remarkable good. And as a weak area he noticed jigzaw puzzles and copying patterns with coloured blocks. With this last he noted that they had great problems with asymetric patterns.
Looking at the overal profile in strong and weak areas with respect to the intelligence tests, he suggested that their might be a problem with the myelination process. Myelin is a white fatty substance around the nerve cells, which acts as an isolator. If it is absent, this means that the signals are not transmitted well through the nerve cells, and that the nerve cells need longer time to recover. Myelination is the process of forming myelin. This process starts about one month before the birth and is largely completed at the age of three, but for frontal parts of the brain it might continue till the age of thirty. A poor myelination process could explain the intelligence profile and also the low muscle tone.
(Disclaimer: for the above remarks, I should note that I do not have a medical education, and that I have not verified the correctness of the above statements with a medically qualified person. Although I did my best in trying to be accurate in my wording, the above may contain errors.)
After this we sat in a circle with the parents, and just talked about our children. There were parents of four new children present. Andy is no longer the youngest child known by the Dutch Kabuki Network. This place is now taken by a two and half year old girl, who happens to be from the same area as where we live and, what is even more surprising, who has the same paediatrician.
In the mean time, all of the Kabuki children had a short examination by Dr. Schrander and her colleague as part of the ongoing research. Also a professional medical photographer took pictures of all the children, which will be used in some of the publications that they are planning. Processing the results of the behavioral study that was done in the past two years goes slowly and it might still take some time before all the results will be published. There are plans for several publications in scientifical journals. Beside this also other publications are planed, such as for example a publication in a journal of the Dutch G.P.'s.
Finally, a small information booklet about the kabuki syndrome was presented by a representive of the Dutch federation of parent organisations. This booklet contains both a description of the syndrome (like presented on the web pages) and some personal stories accomplished with a picture.
Again it was a very blessed but also tiring day.
(Fourth Dutch Kabuki day and Sixth Dutch Kabuki day)