December 18, 2010

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.

1 comment:

  1. ARGH! Sometimes the questions from our very smart NT kids are way more difficult to answer than I ever thought possible!
    You know, one thing I have really struggled with in the autism Mom community is my fear of saying that I really do wish my life was different and that my son didn't have autism. (eek...just said that out loud here, didn't I?) I always feel like I have to make qualifying statements so that people realize that, yes, I do very much love and adore my son as he is! Is it the worst thing in the world to admit that this really sucks sometimes and you wish it was different?