|
|
The younger one, 8-year-old Tom, had quite suddenly started to be ill and his
condition got worse very rapidly since May 1999. At first he was well enough
to run around, but now he is completely bedridden. From the start, since he
was small, I felt he was a little backward, but for outsiders he looked
pretty normal. So he entered the normal elementary school. But in the same year
during the summer vacation, Tom had an epileptic fit for the first time, and
since then, his condition got worse and worse, with frightening speed.
I had no idea what was going on, and I looked after him day and night. My
ex-husband didn't even lift a finger to help. even when our child was having
a fit. It was all the same thing whether we lived with or without this guy,
since he never helped me, so I divorced him---Well, there were some more reasons.
Like his domestic violence. Such awful things!
Later on, Tom changed to a school for handicapped children, and he did his best.
but it got to the stage that his shudder and involuntary movement got so bad
that he couldn't walk by himself any more.
To find out what was really wrong with him, I took him to the hospital, where
we were diagnosed as HD. That was last November.
After this diagnose, I realized that I couldn't look after him by myself, so
that now he is being looked after in the nursing center for orthopedically
impaired kids since last April.
I feel all my tears have now been drained out, so from now on I would like
to keep going only ahead, rather than looking back. Tom's HD won't get any
better by my just "worrying", the treatment is given only for the temporary
measure, as his symptoms change.
Crying and shouting ain't gonna change anything! You'll never know, a miracle
might just happen! We might discover some fantastically effective medications!
Rather than being miserable, I want to be a cheerful Mum in front of my
child, so I try to make him laugh. I heard that laughing is good for HD kids.
Tom laughs a lot. When he smiles, he is so cute! Now his condition seems to
be more stable and developing slower, despite of the rapid decline in
the beginning.
At the moment, eating is proving to be difficult. In the care center Tom
can eat sitting upright in his wheelchair with the help of these marvelouss
nurses who are so good to him. But at home, I can't feed him unless he is
lying down because his meals drips down from his mouth.
Today Tom is here with me, spending the weekend at home. I am the
breadwinner of my family, so I have to work, and that means I pick him up
from the care centre after work. I'm sure I'd be happier if the place was a
little nearer than where it is. The whole journey is about 100 km.
This week was a bit different from the normal routine, so I picked Tom up
yesterday. He's going back tomorrow. I gotta go work straight after that!
Don't you think, that no matter what, since we are given the chance to be
alive, it's better to have as much fun as we can? Albeit Tom has become like
this, I take him out to play, or to restaurants,while being careful not to
stress him out.
It must be so hard for those of you who take care of your loved ones at
home. My heart goes out for you. And I hope we shall be friends.
|
