September 29, 2010

What my daughter said to me a few days ago:

Mama, do you know what true love is?

(Oh, dear God, don't get me started, I think to myself.)

What is it, Olivia?

It is when a princess and a prince love each other more than they love themselves.

Well, take out the prince and the princess stuff, and ....


Where did she come up with that????

OK, so it is a bit simplified.

But what a beautiful description of an ideal.

Whatever true love is, I hope someday my daughter finds it.

And if she does, I hope she never lets it go.

September 28, 2010

Someone recently told me "that there is nothing worse than autism."

How do I start to respond to that?

Some people would probably wonder if I consider that statement an attack on my child.

I do not.
I know the speaker did not intend it that way at all.

You can despise the disorder while loving someone who has autism.
I do it every day.

But, without a doubt, that statement makes me incredibly sad.

Sad, because I know as well as just about anyone what it means to hate autism.

It really does suck.

It sucks to see your child struggle to do what most of us do thousands of times a day without giving it a moment's consideration -- we open our mouths and express ourselves. We chat with friends. We order lunch. We tell somebody a funny story, or complain about life's struggles, or reach out to somebody in need with kind, compassionate words.

My son cannot even say his own name.

The statement also makes me sad because I know the dread concerning the future that lies behind those dark words.

Somewhere along the way I have learned to concentrate more on the here and now. It was NOT an easy thing to do. And that is not to say I don't worry about the future.

I sooooo worry about the future.

But to think about it every day would be to make myself crazy.
And I truly believe that somehow, someway I will figure things out for my son as he and I both age.

Call it dumb, call it fantasy -- and some people have -- but I just believe.

I have moments of doubt. I have many moments where I feel like a failure as a parent. I wish to hell and back that my son would one day be able to talk to me.

I wish my child did not have autism.

But I would never say that there is "nothing worse than autism."

Even though I know the pain that drives the sentiment.

My child IS HAPPY. He mostly lives in his own world. But the moments when he brings me into that world are so spectacular -- they are filled with the absolute purest form of love I ever have experienced.

I believe that my child's love is the closest reflection of the love of a Heavenly Father (assuming there is one).

Because my son truly loves unconditionally.

When he likes you, he truly loves you.

He loves you when you've gained 20 pounds.
He loves you when you've had a cranky day and have shown him little patience.
He loves you even when you fail him.

I ought to know.

And there definitely are things worse than autism.

I have had some experience with that as well.

One of them is losing someone.

One of them is seeing someone lose himself.

And one of them is wishing so hard that you could help someone deal with what is the most tragic pain they have ever experienced ....

And not finding any roadmaps.

One of them is feeling helpless.

September 27, 2010

I Want to Believe in Angels

Spend all your time waiting for that second chance
For the break that will make it ok
There's always some reason to feel not good enough
And it's hard at the end of the day
I need some distraction, oh, beautiful release
Memories seep from my veins
They may be empty and weightless and maybe
I'll find some peace tonight

Sarah McLachlan,
In the Arms of an Angel

If only I knew ....

that there would be an angel waiting for me at the end ...

someone who would wrap his or her arms around me and pull the pain from my soul...

and that the viciousness hurled at me from someone who had no business being any part of my family's story would somehow be erased from my mind.

If only I knew ....

that there would be an angel waiting in the hereafter to tell me that my heart would be healed ...

someone who knew the pain I felt in this life because she witnessed it from above ...

and that the agony of heartache would be replaced by peace and calm and sanity.

If only I knew ....

that there would be an angel waiting for my children one day, too ....

someone who would make sure that whatever hurt they suffered in their lifetimes was replaced with the joy they truly deserve ....

and that everything would be fixed for them in Heaven:

the gaping hole in their family would no longer hurt them,

my daughter would no longer worry about being her brother's keeper,

and my son would find his voice.

So tired of the straight line, and everywhere you turn
There's vultures and thieves at your back
The storm keeps on twisting, you keep on building the lies
That you make up for all that you lack
It don't make no difference, escaping one last time
It's easier to believe
In this sweet madness, oh this glorious sadness
That brings me to my knees

Sarah McLachlan

I want to know that one day I will feel more than what I am feeling right now.

I want to know that one day everything really will be OK.

I want to believe in angels.

September 26, 2010

Faces With No Names

One of the things I remember from being in the hospital after giving birth was how the nurses came by to ask how much pain I was in. They pointed to a sheet posted on the wall -- the same little graphics I suppose most hospitals use -- with the funny faces accompanying a pain scale of one to 10. The faces started off looking pretty normal and then progressed into what looked like complete agony by number 10.

You could line up the best artists in the world, but none of them could draw a face for this.

And there ain't a number high enough.

And, yet, I keep reminding myself that there is greater pain in this world.

I know there is.

There are people whose children have died. Many, many people.

There are people who have lost their entire families.

People who have survived war, ungodly natural disasters, unspeakable violence.

There are people whose children have been kidnapped and who have only the worst to imagine and fear.

It could be worse, it could be worse, it could be worse.

Wasn't I saying the same thing some time last year?

Funny thing about hitting rock bottom: when you realize that what you THOUGHT was rock bottom was merely midway down the ladder, you wonder if you will ever have the strength to get back up.

Yep, I am a rollercoaster, people. And I am ready for the carousel.

Where is it?

September 25, 2010

I ran a pretty darn good race last Saturday, all things considered.

And, man, were there a lot of things to consider...

I ran, I coughed, I wheezed, I sweated profusely, and I finished .... and I didn't even come in close to last.

And what do you know?

I can run a good race just three weeks after discovering the unthinkable ...

And ....

I still have two parents who would climb mountains for me.

I still have a best friend who repeatedly reminds me that I am worthy of love and respect.

And she listens, with all the concern and compassion of a saint.

I still have other friends, too, who remind me how much they worry and care for me. And none of them -- not a single one -- would ever judge or make light of the terrible situation in which I find myself.

I still have two children who love me very much.

And I even have a dog, stubborn and ugly but loving and sweet, who is currently covered in pink and purple hair glitter, courtesy of my daughter.

Life goes on.

September 18, 2010

Someone recently told me that I should spend "all of (my) extra time being a better wife instead of blogging and training for marathons."

There is just so very much I can say about that comment ....

But I won't.

Instead, I am going to lace up my running shoes and participate in a 5K this evening.

My time will stink. I am exhausted. And I am coughing and wheezing up some nasty looking stuff.

But I will finish.

At least that's what I am telling myself. Rah, rah.


September 16, 2010

It was, by far, the happiest day of my life.

First baby.

A boy.

A nine on his first Apgar, followed by a ten.

Eight pounds, 10 ounces.

Ten fingers, ten toes.

A head full of hair.

Everything was perfect.

But it wasn't.

How could I have known?

I gave birth at the hospital where my husband worked. Everybody knew my husband. The people poured into my room. One by one, they came. All day long. Who needs sleep after labor and delivery, right?

But I didn't mind. Seriously. Because I knew they were coming at my husband's urging.

He was so proud.

"Did you hear? I had my baby. Go see my boy. Room 255."

The nurses were so tickled as they described his words to me.

How is it, when two people can so joyously bring a life into this world, when a baby was so very wanted, so very cherished from the second the line showed up on the little pee-soaked stick .....

How can THAT turn into THIS.

Why can't the two people who need each other the most find each other in the midst of all that pain?

Autism really knows how to kick ass.

And I am so very sad.

September 15, 2010

Fixing Things

Since my husband left last year, I have learned that I can fix things.

Not a lot of things.

But a few.

The faucet handle just fell off one day and clanged into the kitchen sink.

I found the part that was broken and called the number on the handle. I ordered a new part and waited for it to arrive. I took out a wrench -- I think it was a wrench -- and a screwdriver, and I got the sucker back on.

OK, so it is wobbly.

But it works.

The light bulb went out in my Sony television.

I got a new one, took the front panel cover off the unit -- again, using a screwdriver -- took out the box with the bulb and slapped that new baby in.

My lawn mower kind of sucks. It is old. Sometimes I have to finagle for minutes in the blazing sun to get it to work. Sometimes I even have to take the little front cover off -- again, with a screw driver -- when I have primed the mower with too much gasoline.

But I get the lawn mowed eventually.

Yes, I can fix a few things.

But not the most important ones.

I cannot fix people.

I cannot place my hands into my son's brain and reconnect the circuits. I cannot redirect all the information buzzing in his brain. I wish I could take the chaos, the cacophony, the lack of clarity and smooth it out.

I wish I could fix the part of him that makes life so difficult for him.

I wish I could fix the part of him that keeps him from understanding how to fully join my world.

I wish I could fix the part of him that blocks the words.

But I can't.

And nobody can.

And it is OK.

It is OK because my son is wonderful.

It is OK because I know that he is happy.

It is OK because there is so much of life that he enjoys -- every time he leaps into a swimming pool, he is at peace. Every time he buckles the belt in a roller coaster car, he is filled with a zest for life that many people never experience. Every time he snuggles with my mother in the love seat in my living room, he knows he is loved.

And every morning, when I lift him from bed (Yes, I still lift him from bed even though he is seven) .... and he wraps his arms tight around my neck and his legs tight around my waist .....

I know how much I am loved.

It is OK because ....

Well, it has to be ....

And because it just is.

September 8, 2010

You are a thief.

You steal from children.

From the time they are in the womb, barely identifiable on the ultrasound machine.

All the mother can see is a tiny blip on the screen. The image looks like a tadpole.

But then she hears it -- a heartbeat. Strong and steady.

And the tears flow.

Tears of joy -- unavoidable tears springing from her soul, from this unreal feeling that her life will never be the same. From this instant, every decision will be made for this child, this person who isn't even here yet. He might as well be. Because he will be all she is thinking about for the next nine months....

And for the rest of her life ....

And you were there, the whole time, you mother f'er.

Just lurking.

Ready to attack my child.

And rob him of his words.

You came into my home.

You robbed us of our joy.

You assaulted us.

You threw at us every weapon in your arsenal.

Fear, insecurity, worry, self-doubt, guilt ...


I didn't want to hear the words.

It was almost six years ago.

I couldn't stand to hear what my son's father was thinking.

He knew, he was positive, he was panicked.

But I couldn't hear it. It wasn't possible. My child was too beautiful, too happy, too lovable.

To accept the label would be to insult my baby.

I couldn't do it.

And you know what you did to us, you son-of-a-bitch, you drove a wedge so deep, so deep, so deep .....

You made me doubt my worth as a woman, as a mother. God must never have wanted me to be a mother. I must have done something horrible in my life to bring this upon my child.

And I cried, and I cried, and I cried.

I did everything they told me to do. The speech therapy, the special needs preschool.

And there you were, the whole time, swatting down my hopes. Laughing at me.

Laughing at us.

Somewhere along the way you and I got to know each other on a first-name basis.

I could say your name out loud, even though I wanted to kill you, to shoot you, to throw you to the ground and kick you over and over and over. If I could take a bat to you, I would swing until my arms popped from their sockets, until I fell to the ground.

Autism, autism, autism.

My family spilt up for you, for a chance to combat you, for some hope that we might be able to conquer you.

And you laughed at us.

You robbed my daughter of a sibling with whom she can talk, with whom she can share her wonderfully creative mind in play. You made her a caretaker when she needs to be the one being cared for.

You bastard.

Oh, you must have had some fun with us. Can I break them? Will they ever find any joy in life again? Will they lose sight of what is important? Can I bring them to their knees?

Well, congratulations, asshole.

You did bring me to my knees, in desperation, in panic, in some worthless attempt to keep things together.

I don't believe I lost sight of what was important, not when all was said and done ....

But .... I am only one person.

In the end, you got what you wanted. You had some help in the form of a complete stranger to you.

And you ripped us to shreds.

But I know this, you may have robbed my child, you may have destroyed my family, but I see the joy that lies within my boy.

There is no purer love than what is in his heart.

And there isn't ANYthing you can do to screw that up.

Now go to hell.