Hello!  Thought an update was way past due, so here goes nothing ...

Beatrice Everett here.  I am the mother of a beautiful three-year-old boy, Jaden Michael, who is the light of my world.  He also happens to be very sick.  He was born with a genetic disorder that may very well take his life before he even reaches the age of five.

At the age of three, Jaden has lost all ability to walk or talk, and he is fed by way of a tube in his belly (he had that put in six months ago).  He can see and hear right now, but doctors think those will go as well as time goes on; it's how this disease (Tay-Sachs) works.  It is a insidious, cruel disease that kills children before they even begin to live.

I have nurses come over to help with Jaden when I am at work; I have to work, so I can take care of the ever-increasing bills (in particular, medical); it is very frustrating to get the mail, and there is yet another bill to be paid.

Yet I do this to keep Jaden alive (or healthy) as long as possible.  I am praying that a cure for diseases like Tay-Sach's is found in our lifetime ... preferably while Jaden is still alive.

By the way, I am not working today.  I am off.  I took the day off so I could take Jaden to his doctor's appointment later on today.

I am grateful that Jaden enjoys life, even with all of his problems.  He can still find joy in the simple things:  cartoons playing on the television screen.  The sight of a bejeweled hummingbird flitting about from flower to flower.  The sight of fat snowflakes gently floating down towards earth, painting a landscape of white.  The sun shining through the leaves on the trees or the sight of children laughing as they tumble about the lawn sprinklers in summer, as a way to keep cool and/or hydrated.

Anything and everything can bring a smile to my son's face.  He doesn't know much sadness, even though he has reasons that could make him sad.  He figures that as long as he can see or hear, than he's doing good; he can still hear/see the best of what life has to offer.

I often wish I could have had another child after Jaden, but when the doctors told me that I had the faulty gene that caused his disabilities, I made the painful decision not to have any more children; they could have been born with the same thing that Jaden had.  Then what good would that have done them (or me)??  None, as far as I could see; this is why I only have one child -- and that child happens to be dying.

I sometimes still get angry at God for allowing this to happen, but then I also have learned to cherish each waking moment I have with my son.  He has taught me much about life, and I have learned so much about his and how to make his life somewhat better while I still can.

Jaden has many friends at the hospital and at his preschool; he goes to preschool twice a week.  He'd go every day, but his health is too delicate, and with the flu season still upon us, we can't take any crazy chances.  He's already nearly died too many times to count; I don't want to rush things any sooner than I have to, you know??

Well, it's time for me to get him at his school; Jaden has a doctor's appointment at one thirty (his geneticist).  Hopefully he will have a good report for us.  I will write in here again soon with another update.  Take care and may God bless you always!  Keep those prayers coming; I think this is one reason why Jaden has been doing fantastically well as of late!  I'd greatly appreciate it!

~Sincerely, Bee Everett.  :)

*to be continued.*