I sometimes wonder if it is my fault that our son, Gibson Michael, ended up the way he is.  I wonder if it is something we could have worked hard to prevent, or whether we could have done something differently.

I look at him, and I can't help but feel a sense of guilt, shame.  I had so many dreams for him when he was in my wife's womb; now that he's here, I see the dreams being dashed to pieces, and I can't help but cry at times.

My name is Gregory (Greg) Parker.  I live in Des Moines, Iowa, with my wife, Roberta Michelle, and our three children:  nine-year-old Ripley Daniel, six-year-old Gibson Michael, and four-year-old Chloe Ryanne.  My wife stays at home with the two younger children; I, meanwhile, work delivering newspapers part tiime and the other time, working at one of the local restaurants, where I am a server.

I have to work two jobs in order to provide for our family.  With our younger son's medical needs, it's getting harder and harder to try to stay ahead of the bills; the bills continue to threaten to eat us alive, and it's gotten Robbie and myself scared.

Gibson was born seemingly okay; however, it was at about six months of age when we suspected that something was wrong.  He wasn't tracking us with his eyes, and he cried constantly.  In addition, he seemed floppy in nature, and he didn't seem to be getting anywhere developmentally; it terrified us.

We had him undergo a battery of tests.  Maybe it was unnecessary worry; he'd be okay; it was probably nothing, we told ourselves over and over again; however, it didn't take long for doctors to pinpoint the problem.  Our son did, indeed, have a problem, a big one.  He had leukodystrophy, which meant that over time he would lose his ability to function, see, do anything for himself.  In time, he would become more like a newborn infant; he would become helpless; he would require twenty-four-hour medical care.

What he had was fatal. Kids didn't usually live past the age of ten when they had this leukodystrophy. 

The news was shattering.  The lives as we knew it was changed forever in an instant; we couldn't believe it was happening to us.  Not our son!  Not our child!  The doctors had to be talking about someone else's child, not ours!, I remember thinking.  Oh, how we cried!!  It was probably one of the worst experiences anyone could ever go through; it was worse than when doctors told my mom she had lung cancer and had just a few more years to live.

That was six years ago.  Now, at the age of six, Gibson can't walk or talk, and he is losing his sight.  He will eventually be totally blind.  He is fed by a tube in his belly, and he has to be dressed, fed, diapered like a baby.  It is very degrading, not only for him, but for us. 

We remember our son as he was before his damned leukodystrophy went haywire.  He used to be able to walk, talk, eat, play like any other normal preschooler; however, as the disease took more and more away from him, he eventually became the little lump you see today, sitting in his wheelchair or lying in his hospital bed, with people to take care of all his needs.

He is six now.  He only has four years left to live--that is, IF he's lucky.  Every day we have with him is a gift; but we've since stopped believing in God.  We can't believe that God would punish an innocent child by giving him this, this--this horrible disease; he didn't do anything wrong to deserve this!!  We're much better off without God; we'll take care of our own affairs, thankyouverymuch!

Well, I've just managed to make myself cry again.  Goddamnit, I am so tired of this; why can't our son just die already, so we don't have to face any more in the way of heartbreak????

~To be continued.~