Bradley’s currently on overload today. He’s sitting next to his toy box
systematically emptying it of all its contents until there will be more empty
space than full and he can crawl inside it and hide away for a little
while. We recently took down his play
yard and are preparing to pass it along to someone else. You see it was overwhelming the living room
and since Bradley climbs out of it at will, well it seemed more hazard to keep
it around. By practicing climbing he just
gets that much closer to climbing out of the crib. Normally this is not an issue, but a kid
attached to a short tube that connects to: what to Bradley is a very attractive, but
dangerously heavy IV pole; well it makes me a little nervous. His
first instinct is to grab the pole and then his second is to smack himself in
the head with it. I can’t imagine what
he’d do with it after that or if he’d even be conscious after a few attempts…so
I try not to let him have too much of a chance at it. Point is that for now, he needs to not climb
so much. Anyway, when he had the play yard and wasn’t
climbing out of it, he seemed to use it as his private office, going in there
when he was overwhelmed by life around him.
Now he doesn’t have the play yard, I’ve noticed that he empties the toy
box and then either sits on the floor in the middle of all the toys or he
empties it enough to let him climb inside.
He had three therapy sessions today, and he worked very hard
for all three of them…his nap had to be cut off early to accommodate the third session,
his first with his PT at the school. I
almost cancelled it because the rain is threatening and all morning long it was
dismal and cold. But for some reason, at
12:30 the sun came out and stayed out till 1:10, ten minutes after the end of
his session. He loved the playground,
but was really tired afterwards. Now it’s
cold and dismal again like the rain is coming any minute now.
We’re approaching the world campaign to spread the word to
end the word, and then on the 21st of March will be the World Down Syndrome
Day. As much as we are fighting for
awareness and inclusion and so many are supporting this; there are so many
others that want desperately to eradicate anyone like my son. There are days that my heart feels heavier
than others. Sometimes life just throws up one wall after
another and just when you scale one you find yourself climbing another one, and
no matter how many times you climb there’s always another one in your way. That’s the way it feels today and overhead
the rain is waiting to pour on us and I’m not sure how big the deluge is going
to be.
Yeah sometimes there is too much information to be gleaned
from the web. I know that I will never
live in New Zealand or Denmark – and there’s a pretty good chance that they
might be off my visit list forever. Europe
is close to falling off to me; they have people taking petitions to the court
to end the life of babies with Down syndrome that slip through the screening
process. There’s a couple suing because
their daughter did just that, slipped under the testing radar – and they want
to be compensated for the life they have to live with her and her
disability. Poor kid. What kind of parent wants compensation for
the life they have to live with their child?
This stuff starts my head whirling.
Here’s the thing, I’m a wuss at heart – it happened the day
I had my first child. I would try to
play it off but I am the worst liar in the world and those that know me would laugh
at me. So there it is, I might have the
softest heart in the world; I used to have a pretty thin skin but each day it
gets a little thicker – it has too. But I
will be honest and say that on days when the world is too much I have a strong
urge to pick up Bradley and climb into his toy box and hold him on my lap. It’s obvious that Love for him is not going
to be enough; I want to save the world, change the world and make it better for
him and every sweet soul like his…but I haven’t figured out how to do it
yet. People with more money than me and
more power than me are in charge and I am just a name on a petition and a
written letter in support or in attack of legislation that I can’t really
influence effectively. I’m a small
person yelling at the top of my lungs and I can’t seem to find Horton right
now.
But sitting on the floor with Bradley on my lap, his toys
strewn everywhere around us, that’s what I can do. I can watch him pick through his toys,
curiously observing the things that grab his attention; marveling at the new
things he figures out and trying to convince myself that the outside world isn’t
waiting to invade. Trying to promise
myself that there is more good than evil out there, and trying to persuade myself
to believe it. For now it’s time to put my little guy in a
bath, see if he’ll water the potty again, see if we can snuggle into a warm
sleeper, a blanket, a little milk and maybe put his head on my shoulder for
much needed sleep in some form of a peaceful way. That’s
what I can do, and on days when I feel overwhelmed like this I fall back on the
plan we made when Bradley was born…Just take one day at a time.
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