Shine a Little Light

A few weeks ago, I went to Mass for the first time in a long time.

I say "Mass" instead of "church", which is my way of still identifying myself as Catholic, even though I list Planned Parenthood on my Facebook page and can't understand how any Church would restrict 50 percent of the population from its highest ranks (and I think God would be the first to say that the Church wouldn't be in as big a mess as it is in if it had some women among its leadership).

Why did I go?

Well, who really knows why I have done a lot of the things I have done recently.

My life is in shambles, which I suppose is as good a reason as you can have to attend church.

I was in my hometown, and I love the church I attended in my youth. It is such a beautiful church. It reminds me of happy days, and of some sad ones, too, like when my beautiful friend Autumn died--a friend who once sat next to me in the pews.

Being there reminded me of a time when my biggest worry was whether the oh-so-cute-boy from across town was going to be there, or if he had attended the earlier Mass. (You would have wanted to sit next to him, too--I am talking Hollywood-gorgeous.)

Oh, what happened to that girl ... did she ever really exist?

If she had only known what was in store for her, she would have prayed a little harder.

While I sat in my old church, I thought about all that I have experienced since that day, more than thirteen-years-ago, when I walked down the aisle at the age of 21.

What happened to THAT girl, and those dreams? Did they ever really exist?

The priest I knew and loved as a teenager has since left the priesthood--a sad loss for the Church, but a blessing for the woman he married. I was glad to see, though, that the priest who is now there was well-spoken and interesting, even if nobody can hold a candle to Father Larry.

I am ashamed to say that I was not familiar with the scripture that day--because I am not familiar with scripture as a general rule, may God forgive me.

But I can remember what he said about the person who was the subject of the scripture--how he had been given an amazingly important responsibility, one he did not expect, and one he was not certain he could handle.

The priest talked about the unexpected difficulties of life, and how God does not promise anything to us with regard to our days on Earth. He said that life is a lot like driving down a very dark, unfamiliar rode. Your headlights give you just so much help, just so much guidance--but even with the strongest lights, there is only so far you can see in each direction.

Man ...... no shit.

Are my headlights even working?

I am traveling down one very dark road. My son is disabled. So disabled that today, at the age of seven-and-a-half, he hurt himself by falling from a shelf he had no business being on--and he could not even begin to tell me what hurt.

I sat and held him as he cried. I clung to him and wished I could absorb the pain.

I wondered how in the world I could ever have been entrusted with this responsibility.

I never expected it.

I still am uncertain I can handle it.

But I have no choice.

Because I am a mother.

And may God shine a little light my way.

Because I sure as heck need it.

Waterfalls, Blue Skies, and Dreams of the Past

When my son was small, his father and I liked to take him hiking.

It was one of his favorite things to do.

My son's father would strap a heavy-duty hiking pack to his shoulders. Daniel would ride along his back. And off we would go.

We hiked along mountains all over northern Arkansas. It was something we began when Daniel was just six-months-old.

We hiked all over the Ozarks. It was as if we were the only three people for miles.

And I felt like the luckiest woman in the world.

Those memories are so glorious. So miraculous.

What happened?

I can remember the waterfalls.
I can remember the serenity.
I can remember the amazing blue sky one day when I looked to the heavens and thought ...

"I will never forget this moment. I will never forget how magnificent the sky looks right now. It is the most beautiful shade of blue I have ever seen."

After Olivia was born, we went on a few more hiking trips. She rode on my shoulders. She could never hike for as long as her brother. She loved it, but she would tire after a while and need a nap. Daniel, in comparison, was simply enthralled with his surroundings. If he did tire, he would fall asleep right there--in the hiking pack, on his father's shoulders.

One of our favorite hikes was at Petit Jean State Park. It wasn't as secluded as many of the other trails we hiked, but it was closer to home, and it boasted a magnificent waterfall. We'd start down a steep path that eventually began to wind along a creek. The trail ended at the waterfall. My children loved it.

When I think back, I realize that Daniel was much more mesmerized with the waterfall than was Olivia. She was looking at everything in her surroundings, and she intently would study any other hikers who came along the path. Daniel, on the other hand, was so much more singularly focused.

He always was.

You can see "the autism" when you look back--you can see the signals, the signs, the red-flags--even though it is so unfair to yourself to think about it that way. How many "typical" toddlers would have been mesmerized by the waterfall?

I can tell you: it is so incredibly difficult for any parent to accept that the beautiful child they saw enter the world is anything less than ... perfect.

It seems like a lifetime ago--those days when I would hike alongside Daniel and his father, with Olivia in the Snuggli.

What happened to that family?

The answers are painful. Autism is part of the story. And it is the central part.

But it is not the only part.

There are other influences.

An inability to see, and accept, the problem at the same time.
An inability to grieve at the same time, in a similar way.
And an inability to share, to communicate about, the grief.

There were other factors at play, too.

I have learned a lot during the past year about just how much trust can be taken for granted. And violated.

I also have learned a lot about just how evil people can be--how they can look upon a troubled soul and take advantage, thinking nothing of the pain that they are causing to so many people.

I have learned what it is like to truly feel alone at the end of the day.

But a part of me can still remember ...

what it was like to hike in those mountains with my children...

what it was like to listen to the cascading waters ....

what is was like to look upon that beautiful, perfect blue sky.

When You Get to Pick Your Family

"Mama, when I am an adult, I am going to live with you," she says to me from the back of the car, as we pull out of the neighborhood on the way to school.

Oh, the joy my girl brings to my life, which is no small accomplishment, given the pain of the past few years.

"Olivia," I tell her, not really sure how best to respond to her tender sentiment, "I would love it if you always live near to me."

"No, Mama," she says, quite forcefully. "Not NEAR you. When I get to be a grown-up, when you get to pick your family, I am going to live WITH you."

When you get to pick your family.

What an amazingly interesting choice of words.

I am frozen. And I wonder:

Are my daughter's words simply her way of trying to get her point across at that particular moment?

Or do they reflect so much more about how she views the world, how she sees family obligation, how she sees the choices that adults have when faced with real responsibility and difficulty?

My daughter has a brother with a severe disability. He cannot talk to her; he cannot listen to her. He cannot share in her imaginary games or her creative schemes. He cannot count down the days to Christmas with her, or pick out a gift for her brithday, or make fun of her glitter eye shadow and pick fingernails.

She knows he is different. She knows her relationship with her brother is far, far different that the relationships her classmates have with their siblings.

And it always will be.

I think my daughter's words reflect an early understanding that we are born into a family of which we have no control. We get the brother God (or circumstance) gives us. We get the parents life gives us. We arrive, we are, and we adapt.
But of course, there is a point when we do get a choice with regard to family.

I may sometimes read too much into my daughter's words. When you have two children, and only one of them can speak, you tend to listen that much more closely to what she says.

So, I may assign too much weight to what my daughter says to me.

But .... I would like to think... that my daughter's words signal that she already is forming an idea of what it means to be a family, and that the image in her head is defined by commitment.

I would like to think that she already understands that people make choices, and that those choices define who we are, and who we will be as family members.

And I would like to think that her words reflect that she really likes her mom, despite my many shortcomings--and that she likes her little family, flawed though we are.

I would like to think that her words, at the dear age of five, suggest something about the adult she will one day be.

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward.”
--- Kurt Vonnegut

The people who really know me, know that I frequently deal with stress through sarcasm, through jokes.

I have managed, during these past two years, to make jokes about things that are not at all funny.

Why do I choose to "cope" with reality in such a way?

I am not sure.

Maybe I am just tired of crying.

I did that long enough.

I cried for my son, for the son I dreamed of, for the life I dreamed of.

I cried, and cried, and cried, until I couldn't even stand myself.

I cried for the dreams that seemed forever gone.

Sometimes, you deal with so much sadness, with so much shit, that the only way you know how to "cope" without tears .... is to joke.

But that doesn't mean my heart isn't hurting.

People disappoint.
Dreams are put on a shelf.
What could have been is replaced by what really is.

And life goes on.

I still cry sometimes. But I really am tired of tears. And so I joke.

It is a coping mechanism.

There could be worse ways, and I have been witness to some of them.

All I know is that I am still here, still breathing, still getting up every morning finding ways to laugh with my children.

Some days I do better than others.

But I am trying to choose laughter over tears.

Sometimes that is a tall order.

But if I can joke, surely I can rise again in the morning...

and find just enough peace to get through the day.

What child would DARE steal from Santa???

What child would DARE steal from the giver-of-gifts, the keeper-of-lists?

What child would DARE think she could outsmart the Ole St. Nick and all of his elves?

MY DAUGHTER.

We didn't have cookies, so we left cupcakes.

And apples for the reindeer.

My daughter put each cupcake on the special plate that we left on the table. She arranged the apples just as she saw fit.

And low and behold ....

when nobody was looking, and she was supposed to be asleep, she sneaked over to that plate ...

And ate all the frosting off of those cupcakes!!!!

As if Santa wouldn't think he was getting robbed.

As if he wouldn't wonder who stole his frosting.

Sweet Lord.

If she can steal from Santa at the age of five, what in the world am I in for as her mother?

Happy New Year, everyone.

My daughter has been signaling that she wants, or needs, to talk about her brother.

And I struggle to best answer her questions.

I can't even begin to know what it must be like to see Daniel through a sister's eyes.

Olivia didn't come into this world with any preconceived notion of what it would be like to have a brother. (So unlike me, so unlike her dad--we both had all these dreams of what it would be like to have a son. Dreams that will never come to be .... at least not in the way we once envisioned--the way idealistic, hopeful, excited new parents envision. And I know those words will bring on some indignation from the "embrace-the spectrum" crowd. But I wanted my son to be able to talk to me, and I won't apologize for that.)

It was a while before Olivia realized that her brother was different.

I clung to those days like any young mother would, with the hope that maybe, just maybe, my first-born would start to make enough progress that his sister would never have to be his keeper.

I remember the little girl who sat in the high-chair and watched her brother's every move, fascinated by this little person who was so much closer in size to her than anyone else she knew.

I remember how her eyes lit up at the sight of him when we picked him up from school, how she would stick close to him whenever she found herself in the company of unfamiliar people, how she chased him through the house screaming "Dan-ya" and giggling with delight.

I remember how, in the very early days, Olivia's eyes reflected an adoration for a brother who could do things, and who was experiencing things, that she was not yet capable of doing or experiencing.

Those days are gone.

Because Olivia has far surpassed her brother, developmentally, in every possible way.

I remember, too, when Olivia said her first word. She was ten-months-old.

Daniel was two-years-and-ten-months-old, and he showed no signs of ever being able to say a word.

It was such a moment of joy.

And a moment of overwhelming grief.

Because not only did Olivia say her first word--"duck"--but she showed me just how far she had surpassed her brother in less than a year of life.

You see, she heard one of us--I can't remember if it was me or her father--ask about a toy duck--one that her brother liked.

"Where is that duck--the one that quacks when you squeeze it."

And off she went--my ten-month-old, already walking by herself.

"Uck??? Uck???" she said. And she walked into the kitchen, picked the toy off the chair, and walked back to her father.

"Uck," she said again, as if to say, "Well, here it is, Daddy. Glad to be of service."

Oh. My. God.

I didn't know wether to shout:

My daughter is a genius!!!

Or.....

My son is so disabled!!!!!

Or both.

A part of me rejoiced. At least this child was going to be standing on the outside of this autism-spectrum-bully that attacks innocent children and robs them of so much. But, oh no, oh no, oh no, what does this mean for my son? Not only can he not say a word, but he is almost three-years-old, and he can't even follow such a simple conversation!!!!

I can picture myself in that moment as if it just happened.

I can picture every single member of my family.

It is as if someone took a picture, framed it, and put in a caption:

This is the moment when you finally realized, Leah--even if you didn't want to say it aloud--that life would never be the same.

Olivia knows today that her brother is different. She knows he is disabled. And I think she even knows that he is always going to need a tremendous amount of assistance.

Sometimes she handles it with amazing grace.

Sometimes she is royally pissed.

I can say the same about myself.

Tonight, before she drifted to sleep, we talked about how she and Daniel would probably be at the same school campus next fall. (I say "probably" because you never know for certain what will happen with Daniel. As a parent of a child with a severe disability, you spend so much time wanting to do the "right" thing, but never really knowing what that thing is.)

She mentioned some of the other kids she knows who will be there, too.

She mentioned a beautiful little boy--Ethan--a typically-developing-kid but an amazingly-extraordinary-child--who took a special interest in Daniel when they both attended an inclusve preschool.

"Ethan is Daniel's friend," Olivia said.

Hmmmm. Well, yes, to the extent Daniel has friends, Ethan is the best. But it is so much more complicated.

And here is the rest of the conversation:

I said to Olivia. "Ethan is very special to Daniel."

"But have you ever imagined how hard it must be for Daniel to make friends? Because talking is such an important part of friendship. And he can't talk to other kids, so it makes it almost impossible for him to make friends. Can you imagine how hard it must be for him to not be able to talk to other people, even though he must want to make friends just as much as we do?"

Olivia looks into my eyes:

"No, Mommy, I can't imagine that. I really can't."

She pauses, and she looks away.

"My imagination must be out of energy."

Oh, dear girl, I know exactly what you mean. But, I know you are trying--in ways most children, and even most adults--can't understand. You are trying to understand what life must be like for Daniel.

And I love you for it.

Because one of life's most difficult lessons is that there always will be people who will never stop and think about what life must be like for others, even when they ought to know better.

If I can do anything for my darling daughter, I hope I teach her to pause before judging, to look upon others with compassion, and to always consider the pain that must lie beneath the most difficult of circumstances.

It is something Daniel continues to teach me, and I am trying my best to learn.

Mama, do you ever wish God didn't make Daniel like this?

And there it is:

The direct, hit-me-upside-the-head question from my five-year-old daughter, sister to Daniel, observer of all.

I wasn't ready for it.

But what have I been ready for in this incredibly complicated, deeply painful, beautiful life of mine.

I had been muttering to myself just before she asked.

Daniel had stopped up the sink with something. I still am not sure with what -- some type of cardboard or paper most likely, because I was able to unclog the drain by simply pushing down a knife and wiggling it around.

(You see, one of Daniel's obsessions is water. I took out the drain plugs some time ago, but he still finds ways to clog drains and fill up sinks. He likes to pour things into sinks and bathtubs, too. Shampoo, soap, laundry detergent, lotion -- I have lost a small fortune in substances, quite literally, going down the drain. Anybody out there want to send me a present? I would gladly take a years supply of shampoo to replace what Daniel has poured down the drain. I get the cheap stuff -- I am a Suave girl all the way down to the white hairs starting to sprout off the top of my head.)

Anyway, back to the story. I was muttering to myself as I went about unclogging the drain. "Daniel, why do you do this to me," I said, even though, as annoyed as I was, I also was glad that he at least turned off the water before it started pouring out of the sink and onto the floor.

And there was Olivia, watching me the entire time.

Then came her question.

Oh, sweet Lord.

I inhaled. I exhaled. And who knows how many thoughts went through my head.

First of all, I don't think God "makes" anybody any particular way. We just arrive. We just are. It just is.

But am I upset that Daniel has autism?

Hell, yes.

Am I frustrated, each and every day, that he can't talk to me?

Without a doubt.

And as he gets bigger and bigger, and his frustration seems to grow at his inability to speak, my fears expand.

I can't think too much about the future, or I will lose what little sanity I have left.

This is not how I pictured motherhood.

This is not how I pictured life.

And if I am this frustrated when my child is just seven, how am I going to make it?

All these thoughts are swirling at rapid speed through my head as I look at my daughter, whose thoughts about her brother and about what it means to love somebody with a disability will be forever influenced by me.

And so I tell her:

Olivia, I wish Daniel could talk to me. And I wish he could talk to you. I really wish he could tell us what is going on in his mind. But I love him, just the way he is. Just like I love you, exactly the way you are.

And I went back to unclogging the drain.

It is the best I can do in the moment.

It will have to do.