My name is Beatrice Everett. I have a little son, Jaden Michael, who is very sick. He's been sick since his birth; it seems lately that his health has taken a downturn, and it has me scared, very scared.
My son has Tay-Sach's; it's a rare genetic disorder that causes increasing deterioation in physical, mental, cognitive development. Our son is two now, but doctors don't think he will live beyond the age of four. Eventually he will become to the point to where he can't do anything for himself, and it breaks my heart every time I think of it.
The funny thing is, we're not even Jewish. Tay-Sach's hits people who are of Jewish extraction; another form hits people who are of Acadian-French background; however, there are cases that can hit people who are not Jewish or Acadian-French; but that is extremely rare.
We just happened to be one of those who were hit by Tay-Sach's; it's turned our lives on its ear. We didn't plan on having a child born with this thing; it was just an unfortunate incident, and to think of it makes me cry.
Until Jaden was born two years ago, I'd really never heard of Tay-Sach's. I've since done a lot of research on the Web regarding hope in treatment; however, right now, there isn't much anyone can do except to watch their child get worse and eventually die. All we can do is care for them as best as we can, make them comfortable as the time of death draws near.
At first, I was intensely angry with God; I mean, how could He allow such a thing to happen to a child--OUR child?? I didn't want to have aything to do with Him; however, lately, I've been seeking His guidance, His mercy, on handling Jaden during his bad days. It's helped, but it still isn't easy, no, not by a long shot.
Until a few months ago, Jaden was a laughing, happy toddler who loved playing with his balls, being held, cuddled, read to. Now he is blind, and he's since stopped talking and is getting difficult to feed. Within the next few months, doctors want to put a feeding tube in, so he can eat; he's losing his ability to chew, swallow. He has since lost his ability to walk, and he spends his days lying around, waiting for someone to take care of him.
He will probably be bed-bound by the time he turns three, the way things look now. We may have to put him in a home for children with special needs; we aren't that equipped to handle such a huge responsibility. My friend Dorcas is trying to talk me out of it; I'm not so sure having our son home is the best option.
I am going to have to do a lot of soul searching, praying, to see what is best for Jaden.
Now that Christmas is almost upon us, I find it hard to enjoy the holiday, especially since our son is dying. We want to make it a very merry Christmas, not only for him, but for our other children; however, we can't get the fact that our son is sick out of our minds. He just got out of the hospital last month; he had a seizure that lasted a good fifteen minutes; it scared the holy he** out of us. He nearly died; it was only by a miracle that he survived.
We have to be so careful to try to keep him well. It's getting harder to do. What's to say he won't get sick yet again a week from now?? There's no telling what may happen with our son!
Well, I've managed to make myself cry again, so I will go for now. I will write in here again. Until later, take care!
~Sincerely, Jaden's mommy, Beatrice (Bee) Everett. :(
