I wrote the below "Letter to Society" several years ago...
I am sharing it here, for Mother's Day, in honor of all the invisible heroes who devote their lives to caring for their children who have lifelong disabilities, and especially for all who are not their mothers but who care for them as if they were.
I have been blessed to have had several invisible heroes in the course of Brandon's life thus far -- those who have gone above and to infinity and beyond for him.
Who have loved him as their own.
But today, for this Mother's Day, I dedicate this to Brandon's current
"Mom away from Mom" -- who cares for him at his day program.
There is nothing more priceless in all this world for warrior mothers than the peace of mind that comes from knowing that the person who you trust to care for your child - actually does care for your child.
And I especially want Trisha's children to read this "Letter to Society" and to know that of all the professions in this world, there is none. I repeat,
none --- that is more honorable, more valuable, than caring for the life of another person. I see them at the center with their Mom and I wonder if they truly know what a remarkable person she is. I see them watching her have to care for the most basic of needs in my son - and I wonder what they are thinking...if they truly understand the word "humble servant" and what it means to be the "hands and feet" of Jesus. I wonder if they can even fathom how in Jesus' eyes, their mother is greater than the greatest and most accomplished and wealthiest person in this world.
Society, school, everyone, everywhere tells you otherwise.
Don't believe it.
I wonder if they can understand that... I pray that one day they do fully understand that... It is my HOPEISM that they are so very proud of their mother in choosing to do what most others would shun or think is beneath them...
Because in heaven - it will be those who care for "the least of these" who will get the biggest "well done faithful servant" welcome.
Thank you Trisha --
Thank you to all the Trisha's of the world.
Thankful & Grateful,Team Guppy
Letter to society
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 policy-making 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 at the realization that I too, had slowly 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.
The 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.
And if you are someone who cares for an individual in the way I must, do not ever let anyone take that away from you either.
~
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.
And to all those caring for those like my son, you are the invisible heroes.
Don't ever let anyone make you feel otherwise.
Written by Michelle M. Guppy
For
all the Brandon's of the world and those who care for them .......