My friend emailed me this story..She knows how I have been feeling at work!
I am a complete mess right now from balling my eyes out...
The most important job is the world.....
Letter to Society
Written by Michelle M. Guppy
I thought it was thunder rumbling in those late hours of the night.
The calm, peaceful thunder that keeps you slightly awake, but yet
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
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
share, I should get up and do all that needs to be done, because my
has an important job to go to early in the morning.
He has responsibilities, meetings. A paycheck to earn. He must be
to do a good job, so he can keep his job. Me, I don't have a job, at
not one I get paid to do or can get fired from. I stay home and care
son and my family. I don't have to clock in. I don't even have to get
And apparently, I don't have to sleep either.
So it was with that anger, (and perhaps a bit of self-pity), that I
upstairs to my son's bedroom to see why he was awake. I didn't need to
on lights, I could follow the banging and clanging of toys being
bed being jumped on. And by the aroma that met me when I opened the
didn't need lights to tell me the reason why my son was up clanging and
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
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
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
9:30am when I was to pick up my other son from swim practice, he was
sound asleep. He looked so peaceful, so sweet. Nothing like what I
just a few hours earlier. The guilt was quite a mouthful as I recalled
I was thinking about him in having to be up most of the night because
him. I hated to wake him up, but knew I couldn't leave him to sleep
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,
normal routine when he wakes up.
As I drove to the pool, I was now mad at myself, and not him. Mad that
was mad about having to get up at night. Mad about being tired all
and even madder that I had no one I could call to stay with him when I
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
to take its toll. Along with nearing forty, adding ten extra pounds;
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
special mirror I have attached to my rear view mirror. The one that
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
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
saw a man, with a man's body, in a sleeveless t-shirt. A man I admired
who was worthy and deserving of my respect. I saw a child who tries so
to navigate a world he doesn't understand, and that doesn't understand
I saw my child who could not talk and who has autism, sitting there as
and vulnerable and as sweet and as innocent as a human being could
And I saw the real reason for my anger.
It wasn't the little boy in the back of the van sweetly grinning and
his head to the beat as a song he likes came on. It wasn't the little
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
that it was a burden to care for or clean up after someone else. That
job of doing that, wasn't worthy of respect or an honest wage. It was
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
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
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
agency council. But am burdened that because I have no help in caring
my son, that the training and position is going to waste because I am
able to go out in the world and put that training to use. All I can do
stay home and feed, change, and clean up after.
No traveling to important places to work on important policies to help
important laws. No, the most important thing I do each day is to
to lock all the doors in my house so my child doesn't run away or flood
And it was that knowledge that had built up, that made me feel the
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
It was that knowledge that had built up that made me wonder if that is
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
except those things or people that matter most.
I was sad at how the jobs where you care for others, are the most
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
I was so consumed with finding someone to help me care for my son so I
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
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
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
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
It just belonged to a consumer, not a person. So what if they made
there wet or soiled a little longer..
After all, it was the middle of the night, who would know? Who would
And my Legislator should. My state should, and my federal government
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
most valuable lesson that all the beautiful, smart, rich, degreed,
important, initialed people in this world, could not ever have taught
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
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
important enough to create, I am doing what is most important in God's
Caring for him.
And that is something I will never let society take away from me again.
Yes my son, if caring for you is all I ever get to do, it is worth it;
I'm honored to do it.
Please forgive me for the times I ever felt otherwise.
Written by Michelle M. Guppy
For all the Brandon's of the world and those who care for them .......