Angelman Syndrome, Life as an Angel

Saturday, September 08, 2007

Someone shared this on the listserve and I had to post it here. It is though I wrote this story myself.Enjoy!
"I thought it was thunder rumbling in those late hours of the night… The
calm, peaceful thunder that keeps you slightly awake, but yet relaxed enough to
still rest, and sleep.

But when the wee hours of the morning came, that thunder became not so
peaceful. Clanging and banging, but not in the rhythmic smooth way that thunder
is. That's when I knew it wasn't thunder. It must be my son. He's up
again. I tried to ignore the sounds, thinking they would stop. I was so tired….
Weeks in the summer when school is out can seem like months when you
cannot find attendant care. But, the mommy alarm in me wouldn't let me ignore
it for too long… What if he's wet… dirty…. hurt. Then, as I lay there
longer still, I became angry. Why me. Why again. Why not wait and see if my
husband gets up to check….

That made me angrier. Knowing that really, even though my husband does his
share, I should get up and do all that needs to be done, because my husband
has an important job to go to early in the morning. He has responsibilities,
meetings. A paycheck to earn. He must be fresh to do a good job, so he can
keep his job. Me, I don't have a job, at least not one I get paid to do or
can get fired from. I stay home and care for my son and my family. I don't
have to clock in. I don't even have to get dressed.

And apparently, I don't have to sleep either.

So it was with that anger, (and perhaps a bit of self-pity), that I trudged
upstairs to my son's bedroom to see why he was awake. I didn't need to turn
on lights, I could follow the banging and clanging of toys being thrown, a
bed being jumped on. And by the aroma that met me when I opened the door, I
didn't need lights to tell me the reason why my son was up clanging and banging.

So in the dark I changed my son so I wouldn't disturb the rest of the
family. I perhaps grumbled too loud as I tried to maneuver a diaper on and off in
the dark. I perhaps grabbed a stray arm that was in the way of me cleaning
him, a bit firmer than necessary. And when diapers were changed, clothes
changed, and sheets were changed, and he went back to banging and clanging, I
know that perhaps I said to him way too angrily, “Go to bed!.”

I'm not sure when he finally did go back to bed, but the next morning at
9:30am when I was to pick up my other son from swim practice, he was still sound
asleep. He looked so peaceful, so sweet. Nothing like what I heard just a
few hours earlier. The guilt was quite a mouthful as I recalled what I was
thinking about him in having to be up most of the night because of him. I
hated to wake him up, but knew I couldn't leave him to sleep while I went. So I
woke him. Once downstairs he was confused as to why he was turning to go
outside to the car, instead of in my bedroom to the tub, his normal routine
when he wakes up.

As I drove to the pool, I was now mad at myself, and not him. Mad that I
was mad about having to get up at night. Mad about being tired all morning;
and even madder that I had no one I could call to stay with him when I have to
leave - or just to give me a break now and then. I was mad that my back
still hurt after two weeks of pain. I guess a decade of bending and changing
and chasing and dressing had started to take its toll. Along with nearing
forty, adding ten extra pounds; not to mention the lack of exercise because of
taking no time for myself, even when I have it to take. Too many other more
important things to do…

Then I happened to look in the mirror … Not the rear view mirror, but the
special mirror I have attached to my rear view mirror. The one that allows me
to watch my son like a hawk while I'm driving. So I can see and hopefully
dodge a drink he has launched my way. So I can see when he's escaped from his
seat belt and can pull over before he gets to the front seat and grabs the
wheel.

What I saw in that mirror humbled me.

I saw a little boy with blonde hair, sleepy eyes, and disheveled hair. I
saw my child in pajama bottoms that were inside out and backwards because I
had hastily dressed him in the dark in the middle of the night. I saw a man,
with a man's body, in a sleeveless t-shirt. A man I admired and who was
worthy and deserving of my respect. I saw a child who tries so hard to navigate a
world he doesn't understand, and that doesn't understand him.

I saw my child who could not talk and who has autism, sitting there as pure
and vulnerable and as sweet and as innocent as a human being could possibly
be.

And I saw the real reason for my anger.

It wasn't the little boy in the back of the van sweetly grinning and swaying
his head to the beat as a song he likes came on. It wasn't the little boy
who couldn't sleep last night because he was wet.

It was society.

It was how society had slowly eroded my sense of self worth into thinking
that it was a burden to care for or clean up after someone else. That the job
of doing that, wasn't worthy of respect or an honest wage. It was those
subtle messages I am exposed to each and every day, that say that to be worthy,
you have to be beautiful, perfect, smart, rich. I am none of those things in
the world's eyes. It was those messages I am exposed to everyday that say
that I must be self-sufficient and have a career. A title. A degree. The
more initials after my name, the more important I become and the more pay I
earn. I have neither, and get paid nothing. So what does all that make me,
or the job I do at home?

It was those messages that if you do have some sort of specialized training
or position, that you have to do something the world deems worthy with it.
I did go through a policymaking class that trains you how to be a
professional advocate. I am a part of an important state agency council. But am
burdened that because I have no help in caring for my son, that the training and
position is going to waste because I am not able to go out in the world and put
that training to use. All I can do is stay home and feed, change, and clean
up after. No traveling to important places to work on important policies to
help pass important laws. No, the most important thing I do each day is to
remember to lock all the doors in my house so my child doesn't run away or
flood the bathrooms.

And it was that knowledge that had built up, that made me feel the angry way
I did in the middle of the night as I changed yet another diaper, yet
another set of pajamas, and yet another set of sheets; in caring for my son. It
was that knowledge that had built up that made me wonder if that is all I would
ever get to do. And if so, was it worth it?

I was sad at how society places value and worth on so many other things,
except those things or people that matter most.

I was sad at how the jobs where you care for others, are the most underpaid,
understaffed, and ill-supervised.

I was sad at how society teaches that no, it's not worth it.

I was sad that at the realization that I had become a part of that society.

I was so consumed with finding someone to help me care for my son so I could
go out in the real world and get a “real job”, a “real paycheck” and do “
really worthy things”, that I saw caring for my own son as a job that didn't
matter. And by seeing what I did as just a job that didn't matter - the person
I was working for, my son, became an object. One that didn't matter. One
that had no feelings. By falling into that trap, I understood why there was
abuse in state schools, nursing homes, and institutions. Some there probably
felt as I felt. That their job didn't matter. They were working for clients
or consumers, and not people. So what if they talked to them rudely. It was
just a client, not a person. So what if they moved an arm out of the way bit
rough. It just belonged to a consumer, not a person. So what if they made
them lay there wet or soiled a little longer…. After all, it was the middle
of the night, who would know? Who would care?

I do.

And my Legislator should. My state should, and my federal government
should.

And above all, society must.

I am not angry anymore, I am humbled.

At how God used my son, the least of these in the worlds eyes, to teach me a
most valuable lesson that all the beautiful, smart, rich, degreed,
important, initialed people in this world, could not ever have taught me.

He taught me that all I have to do to define worth, is to look in the
special rear-view mirror of my car - and see what is worthy in God's eyes. To see
what's beautiful, rich, and intelligent in God's eyes. My son's worth is
that he is simply a child of God. Not enabled, not disabled. Just a child.
An individual. My worth is further defined by knowing that in loving and
respecting that individual that God thought important enough to create, I am
doing what is most important in God's eyes as well…

Caring for him…
~
And that is something I will never let society take away from me again.

Ever.
~
Yes my son, if caring for you is all I ever get to do, it is worth it; and
I'm honored to do it.

Please forgive me for the times I ever felt otherwise.

posted by angelwings @ 5:09 PM 0 comments

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What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

See my complete profile

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