Faye Emerson here.  Remember me?  If not, let me clue you in, so you're not left in the dark.

I and my husband, Trenton (Trent for short) have three beautiful children, who are the lights of our life.  Our children are ten, seven, and four.  Two girls and a gorgeous little boy.

We seem to have the good life:  a beautiful, spacious home with a huge yard, a steady job (on hubby's part), good medical insurance, money coming in.  Things seem to be perfect to most people.

Looks, however, are deceiving.

You see, our life is not perfect.  Far from it.  We have to worry about things like bills, whether our youngest (Nicholas) is going to end up sick or in the hospital again, or whether people are going to make rude/inappropriate comments about our son.

Nicholas was born seemingly healthy; however at the age of six months, he started exhibiting signs that something was wrong.  At about the age of one year, our baby boy was diagnosed with a fatal, neurodegenerative disease--and our lives were turned upside-down, forever and ever.

Life for us hasn't been the same since.

Now, at the age of four, Nicholas can't see, can't walk, is nonverbal (he can only make noises), and can't eat or even go to the bathroom on his own.  He will never be able to read, learn to count, write or spell his name, drive a car, or get married and/or have a family.  He isn't expected to live past the age of ten; if he does, it will be a major milestone.

Nicholas has a disease called Canavan's.  It is in the leukodystrophy family, and it causes increasing physical/mental/cognitive deteriation until the sufferer is left virtually helpless, a prisoner of his or her own body. 

There is nothing really that can be done except to watch your child's health go downhill--or perhaps, watch him or her die.

Nicholas spends most days lying in his hospital bed; when up, he sits in his wheelchair, or lies on the couch, with special supports to hold his limp, flaccid body upright, so he doesn't choke.  He loves being where people are; as long as people are tending to him, paying attention to him, he's at his happiest.

All we can do is feed Nicholas his special formulas every four hours via his feeding tube; through this same tube, we also dispense his medications every four hours, around the clock, to prevent seizures, pain, spasms, other problems.  We dress him, change his diapers, clap his chest and back if he's congested, try to prevent another trip to the hospital.

We also can love him, try to accept him, make sure he's happy, comfortable. 

It's not an easy life, not by a long shot.  I wouldn't wish this on anybody, not even my own worst enemy. 

I don't know what I could have possibly done to deserve giving Nicholas this horrid, insidious disease, except that I carried a faulty gene, then passed it on to my son.  The girls weren't affected, which is nothing short of miraculous, but our son was, and now we must pay the price, deal with his disabilities as best as we can.

I sometimes get mad at Nicholas when he is angry or upset or if he makes another mess in his diapers.  I scream at him, sometimes have gone as far as slapping him on the face; then I feel horrible.  It is during these bad times when I wish that he was dead, so he wouldn't have to suffer any more indignity in his life.

This is when I'm glad we have the home health care nurses come to help out, or when we have respite care workers come to help, so we can get away, even if only for a little while.  Sometimes we take Nicholas with us on our jaunts, but not always.

Well, Nicholas is crying again, so I must tend to him.  I will write in here another day; until then, God bless and continue to keep us in prayer.  We can really use all the prayers we can possibly get!

~Faye Emerson. :(