‘No One Ever Promised That the World Was Fair’

I do not have a complaint about society per se, just some thoughts that might help someone put their problems into just a little better perspective.

Three months ago I felt on top of the world with a good job, a nice home, a loving wife, a nice 6-year-old boy going into first grade, a beautiful little blond 4-year-old boy and an outstanding 2-year-old “Daddy’s Girl.”

One month later my beautiful little 4-year-old boy was blind and this month has lost most of his hearing. He has a relatively rare genetic disease called adrenoleukodystrophy, which affects boys between 4 and 8 years of age. The prognosis is death within 1 to 10 years and no known treatment!

This is a very hard thing for two parents to come to grips with when their life has revolved around these three kids. This shock was followed in the past week by a report that our 6-year-old son’s blood test was positive and now we can wait on symptoms to show up on him.

Doctors say that genetic engineering should eliminate this terrible killer of young boys by the year 2000, a little too late for us. There is probably not a lot of money being spent to find a cure for a disease that affects such a small number of boys (none of which are famous or have famous parents), for we have found it hard to find out what if anything is being done. We are being told basically, “Take them home and love them.”

With this burden we find the frustration almost unbearable of not being able to do anything but to try and give them enough love to make up for a lifetime. How can that be done?

Why can’t people love their children everyday like they might not have them tomorrow? Why are my kids being taken in such a terrible manner when there are people who would abuse, abandon or even kill theirs?

Now that I think back over the years, no one ever promised me that the world was fair or that good guys always win.

THEODORE W. HUGHES

Cypress