Current mood:	nostalgic
Current music:	"Sunrise, Sunset"

"For everything, there is a season..."
Today has been a day both of joy and of sadness. Today, our son made the decision to accept a permanent job as a manager at the Academy of Natural Sciences instead of waiting on an uncertain appointment for education at Hiram Andrews Training Center in Johnstown for vocational training.

My younger son Darius (D.J.) has fought a courageous battle for the majority of his life with two different challenges: He has both severe dyslexia as well as a genetic disease called Ehlers-Danlos Syndrome. To explain it briefly, it is a glitch in the gene responsible for the proper formation of connective tissue in the body, which holds everything together (joints, muscles, bone,ligaments, etc.). When it misfires, strange things happen. People with Ehlers-Danlos (EDS) have spontaneous dislocations of their arms or legs. They may have very stretchy skin (remember the Rubber Man of the circus). People with EDS may be able to hyperextend their joints (double-jointedness)or twist their bodies in very flexible ways. But mainly, EDS is painful and difficult for doctors to diagnose. There isn't really a blood test that pinpoints it; its more a matter of doing a very thorough genetic history and examination. It does tend to occur in tall, thin people but not always. A famous person who was believed to have had EDS was the violinist Niccolo Paganini, who was known for doing incredible fingerings on his instrument because of his hyperflexible joints.

D.J. suffered a long time with pain and exhaustion. He couldn't stand much heat or cold. Getting upset made it flare up in what he calls "spikes" - painful, electric-like shock sensations all over his body. Sometimes his arms would suddenly dislocate with a loud pop that could be heard by others in the room. But the hardest trial D.J. had to face was that his own parents didn't always believe he was ill, especially after they were told by a counselor that it was a ploy for attention. There were times when we (especially me) were impatient with him after having to sit with him for hours and nothing seemed to help the pain, the dislocations, and the paralysis that seemed to come out of nowhere and last for as long as a day or two. It took over three years and a fortuitous break (My sister also was going through some medical issues and received the diagnosis of E.D.S. shortly before D.J. at Johns Hopkins. The similarity in symptoms led us to a geneticist)before we got a real diagnosis.

This marked the end of the beginning, as he is still on his way to getting some control over his disease.

The severity of dyslexia, despite much academic intervention, is such that he is for all practical purposes, "word-blind". Yet, with both challenges, our son has set goals and met them.

Originally a volunteer at the Academy as part of his homeschooling education, his qualities earned him more and more responsibility, until he was offered a job as a part-time manager after graduation. Now he has decided that in order to achieve another goal, that of being a volunteer minister of Jehovah's Witnesses, he would forego leaving the area in order to build relationships within his congregation and the local community. It wasn't a decision he made lightly, because the schooling would have provided him more skills in dealing with his disabilities. However, he has waited nearly a year to enroll in the school, and he wants to get on with his life. The next stop - getting his own place.

We have lost our little boy, but we have gained a young man.