I wouldn't wish this on anybody, no matter how bad, how evil they may happen to be.  What we are going through right now is the worst possible thing anyone can ever experience.

My name is Faye.  Faye B. Emerson.  I am the parent to three wonderful children, one of whom happens to be severely handicapped, and we don't have an easy life.  Our lives often revolve around our youngest, Nicholas, because he requires twenty four hour care.

Nicholas, who is four, was born seemingly healthy; however, at about the age of six months, he started exhibiting subtile signs, signs that something was wrong.  We took him from doctor to doctor, desperately seraching for answers; finally, one told us that our son was born with a genetic disorder (Canavan disease), which would, ultimately, kill him by the time he was ten years old--if he was lucky to live that long.

Now, Nicholas's health has deterioated.  At the age of four, he can no longer talk or see; he has never walked a day in his life.  Most of his time is spent lying in his hospital bed; if he is up, he sits in a wheelchair.  Our son is fed via a gastrostomy tube that's been inserted in his belly; we feed him five times a day, to ensure that he gets all the proper nutrients he needs.  We also give him medication for pain, seizures, etc., through this tube, every four hours, without fail.

We do this to keep him alive.

Parenting a child like Nicholas is rewarding; however, it is also heartbreaking because you don't know how long he'll be around, and you don't know when he is going to become sick or end up in the hospital again.  It seems that he ends up in the hospital every month or month and a half; he is so prone to respiratory or other illnesses that can strike without little warning.

Despite his many physical hardships, Nicholas is a very happy little boy who laughs, smiles often.  He gets so much enjoyment out of the simple pleasures of life:  the wind tickling his cheek when outside, feeling the warmth of the sun or the raindrops hitting his face, holding a soft, furry kitten in his lap:  yes, any of these things are guaranteed to cause a smile to come to his pale little face.

Nicholas loves to be held, read to, sung to:  as long as people pay attention to him, acknowledge him in some way, then he's a happy camper.  It's when people ignore him or make mean faces/comments to him that makes him unhappy.  It makes us unhappy too.  Even though he's disabled, he should be respected, treated with dignity.

We often get frustrated because caring for Nicholas takes precious time away from our other two children, seven-year-old Renate Grace and ten-year-old Ellen Michelle.  I am sure that they resent their little brother for being the way he is; I sometimes hear them talking late into the night, wishing that he didn't have to suffer; it breaks our hearts.

Caring for a child like our son is expensive.  I stay home with him, but my husband, Trenton, works three jobs, anything to try to ensure we have the money in order to pay the incredible bills we face.  We already owe thousands of dollars for past hospital stays, and every penny we get we have to pinch until it squeals out in protest.

You can forget vacations or luxury items for this family.  We are living on the ragged edge of financial ruin; we are struggling middle class citizens who can't seem to get a break in our finances. 

It's all due to Nicholas.  And it isn't his fault. 

Until Nicholas was diagnosed with Canavan's, I'd never heard of it, never even knew I was carrying the faulty gene.  Now I feel responsible for his health, and I think caring for him might make it up to him, somehow.  Sometimes I feel like I'm the only person in the world going through this hell.

Well, I am going to go, as his pump is going off again.  Hopefully it's not malfunctioning again; that darn thing has a way of going off when there's really nothing the matter.  It about drives me inSANE!!  Take care and say a prayer for us; we can really use a touch from the Almighty upstairs!!

Thanks for listening, allowing me to vent.

I will write in here again.  I feel Nicholas' story isn't done yet, not by a long shot!

~Signed Faye B. Emerson, mom to Nicholas, Renate, and Ellen.