Sometimes I can't find any words. Or maybe I am too afraid to put words to the thoughts swirling in my head.

Sometimes it is just too damn hard.

So I will share the words of another mother and blogger who is dear to me, even though we never have met.

I love the post I have shared below for so many reasons. I love how my friend manages to look through sadness and worry and fear to find all the ways her daughter teaches her.

And I love how my friend manages to put words to so many of my innermost thoughts.

I can only begin to imagine what it must be like for my friend to see her child suffer so much. I would never want her to think I was comparing our situations. But I do know something about the feeling she describes -- the feeling that, as a mother, I have to do something to let my child know I am there -- even when I have no idea what that something ought to be.

I, too, sometimes find myself singing in a dark room, in the hope that my son's tears will stop.

I, too, sometimes think about how difficult it is to love someone when you feel as if that person has rejected you.

It is the most heart-wrenching feeling I have ever known.

I want to share my friend's words because she amazes me...

and because she teaches me.


http://rhemashope.wordpress.com/2010/12/13/a-silent-night/

One of my daughter's playmates -- the son of a woman who is both a neighbor and friend -- was in my home a few days ago, and as is typical with this little boy, he was taking orders from my five-year-old girl with such good humor that I thought of trying to arrange a marriage.

He has been in my home many times before, and so he has seen my son Daniel and is very familiar with his differences. But he had never asked me about it, until this particular day.

I saw him watching Daniel and then listened, as he struggled to phrase the question forming in his head.

"Leah," he says to me, "Why does Daniel not know anything."

Hmmm .... How interesting it is to hear the thoughts of young children. How difficult it is for them to ask the questions about the things, and people, they find so mysterious.

"Well, honey," I tell him, "Daniel actually knows lots of things. He just can't talk to you about them."

My daughter then joins in.

"That is right," she says. "He has something called autism. And some people with autism can't talk, even when they are adults."

"OK," says our friend. "But why?"

Yes, WHY?

My daughter comes to my rescue.

"Well," she says, "That is just the way God made them."

I am not sure that answer really adds any clarity to the issue, because my adult mind still wants to scream, "WHY???" But .... it seemed to work for our little friend, who said simply, "OK."

I felt compelled to add something -- who knows why, he no longer seemed worried about it. But how will the world ever begin to truly accept people with disabilities like my son's if the mothers of these children don't try, at least on occasion, to increase awareness.

And so our little friend, my daughter and I, had the following conversation:

"You know how some people can't see? And some people can't hear? And some people can't walk?

"Yes," says our little friend, "Really old people."

HAH!!!!! I couldn't keep a straight face, but I soldiered on.

"Yes, sometimes really old people have trouble seeing, or hearing, or walking. But so do lots of other people, of all ages. Even kids. There are some kids in this world who can't see or hear or walk."

"Yeah," says Olivia. "That's why someone uses a wheelchair, because they can't walk."

"And what I think," I tell my little friend, with the knowledge that his family has a much more faithful church attendance record that I do, "is that God really, really hopes that when kids like you and Olivia, and when adults like me, see people like Daniel, who can't talk, or other people who can't see or hear or walk, that we notice them, and go out of our way to be good friends to them."

"You know, Daniel likes a lot of the very same things you do," I tell him. "And he does know lots of things. He can push the button to start his favorite video. And he can swim really well."

"Can he float?" our little friend asks.

"Yes, he can -- very well. And he can jump off the diving board. And he can swim to the bottom of the deep end to get diving sticks. And not only does he ride all of the rides at Six Flags -- even the big,scary rollercoasters, but he knows where all of his favorite rides are."

"Wow," says this darling five-year-old boy with the spiky blond hair and soulful eyes, "Daniel really does know a lot of stuff."

OH, GOD, HOW PRECIOUS IS THIS CHILD.

Maybe his parents really would go for an arranged marriage in, say, 25 years.

What It's Like

We've all seen the man at the liquor store beggin' for your change
The hair on his face is dirty, dreadlocked and full of mange
He ask the man for what he could spare with shame in his eyes
Get a job you fuckin' slob's all he replied

God forbid you ever had to walk a mile in his shoes
Cause then you really might know what it's like to sing the blues
Everlast, What It's Like

I am a college educated woman with an advanced degree.
I was self-assured and confident when I walked down the aisle of my beautiful hometown church to be married.
I worked in a professional field for three years before I gave birth to my first child.
I didn't touch liquor when I was pregnant. I have never used illegal drugs, not even pot. Never touched a cigarette. I took my vitamins. I was the ideal expectant mom.

And, six years ago ....
I found myself wondering if my son had autism and the child waiting in my womb had a birth defect because I was a bad person.
I found myself thinking that I must have been an incredibly bad person and maybe I didn't deserve to be a parent ....

Five years ago ....
I found myself caring for an infant who filled me with joy.
I found myself trying to be optimistic about the son who filled me with worry, even as he lit up my days every time he wrapped his chubby arms around my neck.
And I found myself slowly giving in to the exhaustion, lack of sleep, and fear ...

Four years ago ....
I had received the official diagnosis.
I heard the experts tell me that I MUST keep him as engaged as possible, as much as possible, every day, all the time.
I thought that my son's only chance was for me to keep his brain working, to stop the stims, to make every moment of his day "meaningful."
I hated the guilt; I hated the feeling that I could never do enough.
I started getting bitten by my son, who didn't even have a single word to tell me about his own anxiety.
And I started wondering if maybe, not only did I not deserve to be a parent, but maybe I would have been better off never having been born.
The thoughts scared the crap out of me, and so I told a doctor. And just having told someone, and taking an anti-depressant -- something I had never before considered -- seemed to help.

But ...

Three years ago....
I found myself in a new city with my two young children, missing my husband terribly, but hoping my family's sacrifice would make a big change in my son's life.
I felt incredible guilt that I was never doing enough for either of my children, that neither my son nor my daughter was getting close to what they deserved.
I felt pulled in a million different directions.
I was so very lonely.
And scared.

Two years ago ....
I felt everything in my life starting to fall apart.
I just wanted my family to finally all be together.
And tell each other we loved each other.
And laugh ...

A year ago ...
I was at one of the worst points of my life.
I had dropped to my knees, only to see a back and a closing door.
I cried so much I thought my eyes would permanently swell.
I screamed in frustration.
I saw even more people turn their backs on me, blame me, ignore me.
I wanted to pull the covers over my head every morning, but I had to get up. I had to get kids to school. And I'd be damned if I was going to stop taking them to parks, or McDonalds, or Six Flags.
But I was on automatic pilot.

And in the past several months...
I have gotten answers to questions I never thought I would have to ask.
I have dealt with pain I did not deserve.
I had it rubbed in my face.
I have come face to face with vicousness in human form, and walked away.
And I have found myself face first in the ground, sobbing, more than once.

I have the same old worries and a fresh set of new ones.

I knew this kid named Max
He used to get fat stacks out on the corner with drugs
He liked to hang out late at night
Liked to get shit faced
And keep pace with thugs
Until late one night there was a big gun fight
Max lost his head
He pulled out his chrome .45
Talked some shit
And wound up dead
Now his wife and his kids are caught in the midst of all of his pain
You know it crumbles that way
At least that's what they say when you play the game
God forbid you ever had to wake up to hear the news
'Cause then you really might know what it's like to have to lose
Everlast, What It's Like

I have learned a few things in this life.

I can mess up bigtime with my children, and even though I feel horrible about it, I most certainly will do it again.

I still can find reasons to laugh every day, and be thankful every day, even as I never forget the sorrows of the past six years. Because that is a choice, and it is what I have chosen. The reasons really are there -- I choose not to overlook them.

And nobody ever knows what it is like to walk in someone else's shoes.

I've seen a rich man beg
I've seen a good man sin
I've seen a tough man cry
I've seen a loser win
And a sad man grin
I heard an honest man lie
I've seen the good side of bad
And the down side of up
And everything between
I licked the silver spoon
Drank from the golden cup
Smoked the finest green
I stroked the baddest dimes at least a couple of times
Before I broke their heart
You know where it ends
Yo, it usually depends on where you start
Everlast, What It's Like

I know I am not done learning.
I hope the lessons waiting for me tell me a lot about how much people, myself included, can change. For the better.

Why I Run

I could say that the past two years of my life have been a beatdown.

And I wouldn't be exaggerating.

My trust, my hope, my heart ....

have taken a beating.

How do you cope with life when everything is not how it should be?

When there is no foundation beneath your feet.

And two little children wake up every morning expecting to be loved, and cared for and comforted.

It ain't easy.

You learn a lot of lessons.

Many of which you would have been better off never needing to know.

But life ain't easy.

So you either cope, or you fail.

I don't know how other people do it--people who have found themselves taking care of children, much less a child with special needs, on their own.

I never expected to be in the position I found myself in last year, and I still sometimes wonder how it happened.

I also still struggle with how to deal with the challenges placed before me. But I do know that one of the biggest reasons I haven't jumped off a cliff is because ....

I ran.

And ran and ran and ran.

What do you know?

This simple act of taking one step after another, pushing myself against my previous time, forcing myself to go one extra mile, telling myself that if my son could face the world with all of his challenges, then I could surely keep my feet shuffling along the pavement ....

It saved me.

I was never an athlete in my younger days.

I dodged balls thrown in my direction.

I would have liked to skip junior high PE in its entirety.

I always felt like I couldn't do anything even remotely athletic. I didn't even want other kids to see me run, because I thought I looked so incredibly awkward.

So what a surprise ...

I am running a 10K on Thanksgiving morning.

And I am so excited.

I have completed one half-marathon and three 5Ks in the past year.

And my times were nothing to sneeze at.

I can do this. I can actually run.

I love what running has done for me.

I love the tension that flows through my body when I wait behind the starting line.

I love the sense of accomplishment when I cross the finish line.

I love the mental challenge that comes with each race, the feeling that nothing can stop me but myself, that nothing can stand in my way as long as I decide to keep moving my feet.

Nothing .... can ..... stop ..... me.

It is a glorious feeling.

It makes me strong.

And I can use all the strength I can get.

AMEN

http://www.schuylersmonsterblog.com/2010/11/wrong.html

Oh, mirror in the sky,
What is love?
Can the child within my heart rise above?
Can I sail thru the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Children get older
And I'm getting older, too
-- Stevie Nicks, Landslide


Sometimes you don't have any choice but to change.
Because the world as you know it disappears ....
What you envisioned as your life is no more.

And, yet, your responsibilities remain the same.
Indeed, they expand.

You wonder if you can do it.
But you have no choice...

And you change.

In ways big and small.

Sometimes you cry.
You mourn the loss of everything you believed to be real.
And the sobs pour through you.

In ways big and small.

Eventually, you start to recognize things that will keep your from disappearing.
You accept them.
You embrace them.

But you still worry, and you still mourn.

In ways big and small.

Joyful Curls

My daughter wants her hair curled.

It is not national news.

Reporters aren't beating down my door for a sound-bite.

But it is one stinkin' big deal to me.

My girl, my don't-wash-or-brush-or-fix-my-hair-daughter, WANTS HER HAIR CURLED.

What happened?

She climbed into her car-seat Monday after school and started talking about her role in the school Christmas pageant next month.

And she said the words that nearly caused me to drive off the road:

Mommy, will you curl my hair for the Christmas show?

Ah, heck yes!!!!!

The next day was a repeat performance.

Mommy, will you curl my hair for the Christmas show?

Will you curl it when we get home?

I am not sure what brought all of this on.

But I found that rarely-used curling iron and curled her hair.

AND THEN SHE ASKED ME TO PAINT HER FINGER NAILS.

I am loving this.

And I ain't even THAT girly of a girl.

Olivia, thank you, thank you, thank you.

For these moments when I can just be a mother paiting her girl's finger-nails.

I will curl your hair every day if you want me to.

And I will inwardly cringe some day when you decide you are old enough to do it yourself.

Thank you, dear daughter, for these moments of pure joy.