Howdy!  Faye Emerson here.

Sorry for not writing; my husband and I just took a wonderful week-long cruise to Cozumel and Playa Del Carmen in Mexico, and we had a most wonderful time!  It was so great to get away from our children and our worries, even if only for a short time!

Since the cruise, Trenton and I feel rejuvinated; we feel like we can take on the world!  It was a vacation we needed!

Our children, Ellen, Renate, and Nicholas, stayed with my mom; mom said they behaved themselves, and thankfully Nicholas didn't get sick, no, not even once, which was something of a surprise.  It seems that any little thing can bring my son down in a heartbeat; it doesn't take much for him to become seriously ill or ending up in the hospital again.

Our youngest (that's Nicholas; he'll be five in July) has Canavan disease, which is a leukodystrophic illness that causes increasing disability and loss of cognitive, motor, and developmental function.  Eventually its sufferers become dependent on others to care for them; it's a horrible disease, and it's heartbreaking for those who have to witness its effects on the child.

It's also fatal:  most of its sufferers die by the age of four years; however, there are those kids who can live into their teens or even young adulthood with it. 

We didn't know until Nicky started showing symptoms that we even carried the gene; however, a gene test revealed the awful news.  Both my husband and myself carried the gene.  We still don't know why it skipped the girls and went to our son, but it did, and now we're afraid of trying to have another child, for fear that he (or she) might end up like Nicholas.

Now at four and eight months, Nicholas is totally helpless.  He can hear, but he can't walk, see, or do much for himself.  He is tube-fed, and he wears diapers, like a baby.  It's so sad to see him in this condition; we didn't ask for our son to suffer so much in his short life!

We are more than glad to care for Nicky, but it's time consuming.  If we do go out, it's only for a short time; this cruise was the first time we'd been able to get away from all of that. 

My mom and dad did a great job in taking over the responsibility in caring for our son, and our nurses, who come daily to help out with the more medically-involved procedures, came too, as did his therapists, who stretched his limbs and pounded his chest, so he wouldn't get pneumonia again.

I wish we could do more to help our son; I wish our son could see again, walk, or take care of himself, or even talk, tell us that he loves us.  It breaks our hearts that he can't do any of this things, and this is when we get angry at God for allowing this to happen.  If God is so loving, why does he allow a little boy to become nothing but a helpless lump, unable to do anything for himself?  It doesn't seem right, and it isn't fair!!

This is why I journal, to get my feelings down, and to let people know that there are people who are facing challenges like ours.  We may feel alone, but we know that we aren't; there are other people in this same boat we are in.  It's helped, but it doesn't really lessen the pain or heartache.

Well, I am going to go.  Kids are off from school this week (Easter break), and besides, Nicholas is crying in his own special way; it sounds like he is hungry.  I will write in here again soon; until then, this is Faye signing off!  Take care and keep us in your prayers!

~Faye Emerson.  :(

*To be continued.*