May 5, 2010

If You'd Allow Me to Stop Smelling the Roses for Just a Minute

So, I managed to "happy blog" for 14 straight days.

It is not like I performed brain surgery, or finished a triathalon, or got elected to national office.

I just wrote for 14 days about stuff that makes me happy.

If you only knew the circus, the drama, that is my life, you might realize why that is not such a small feat.

Here are some of the reasons why:

My son, who is gorgeous beyond words, and six-years-old, cannot talk.

At all.

Can you imagine that for just a moment? You are going through life without the ability to express a single thought. You can't tell someone if you have a headache. You can't ask what is on the agenda for the day. You can't say, "Hey, why am I getting in the car right now? Where are we going and how long will we be there." You can't even tell someone what the #^$& you'd like for dinner.

I don't know what to do to best help him.

I know he will ALWAYS need a great deal of assistance.

I would literally rip a kidney out of my body with a sharp-edged spoon if it would make him talk.

I would, I really would.

I would close my eyes knowing that I had lived my last day on this Earth if my son would wake up the next day and be able to talk, and learn, and play like all the typical six-year-old children I see at his school.

I wouldn't even need to see it. Just to know that it would happen in my absence would be enough.

And there is my daughter, just four-years-old, who is wise beyond her years.

She is hurting. Oh, how she is hurting.

I am trying to take care of both of them the best I can.

By myself.

Talk about frustration.

And there is plenty of that to go around.

My son shows frustration in the only ways he can. He yells, he cries, he sometimes strikes out at me.

I don't always handle it with the patience he deserves.

I fail him. So often, I fail him. If only, if only, if only ... If only I could be stronger, if only I could have more energy, if only I could find the answers.

My daughter shows her frustration in ways that aren't quite as challenging. But her words strike at my heart.

I can't answer her questions about what has happened to her family.

I can try. But there are no answers, none that make sense anyway.

I can only try to imagine what it is like to have a sibling so very different from the "norm."

One day last week she got upset with her brother. He gives her plenty of reasons to, in ways so very different than that of a typical sibling.

He is never purposefully mean to her. He simply wouldn't know how. Because it would never occur to him to be mean. But he can be sneaky. He can steal her favorite foods like a bandit. He can run off with her favorite toy, even though he has no desire to pay with it, because Daniel doesn't know what it means to "play" with toys.

Pretty minor offenses when you consider the childhood torture that some typical siblings can inflict on each other.

But what makes Daniel so frustrating for Olivia, at least what I imagine must be so frustrating for her, is his lack of response.

So much of the time, Olivia lives in a magical fantasy world. I sometimes hear her talking and think she is speaking to me, only to find her with her dolls -- they are doing any number of things and engaging in remarkably grown-up conversations, these Barbies and stuffed animals.

Wouldn't it be nice if her sibling could join her in these fantasy playworlds, even if he was putting a boyish spin on things.

Not a chance.

Olivia has moments when she quite obviously is a four-year-old. And then there are moments when she dazzles me with her intellect, her inquisitiveness, her maturity.

She has NEVER, not once, asked me why her brother cannot talk.

She has commented on it to others, but never in a hurtful, or even in a questioning way.

Once, when she a young two, she said to me, "Daniel cannot talk. But he sure is a good swimmer. And he can open his raisin box all by himself."

Oh ..... my dear, sweet girl.

I frequently hear her pointing out her brother to children she meets at playgrounds.

"That is my brother Daniel. He cannot talk."

The first time I heard her say that, a pain ripped through my entire body. But just for a moment.

It is the truth. It is reality; it is her reality just like it is mine, just like it is Daniel's.

A few days ago, for the first time, Olivia showed her frustration with autism in words.

Daniel had stolen one of her PB crackers. It had been a long day. And Lord knows she has so many troubling things going on in her life apart from her brother's disability. She was tired. The theft was too much.

"Mama, I want a brother who..."

And she stops herself. And starts again.

"Mama, I want my brother Daniel to LISTEN to me."
"I NEED him to listen to me."

Oh................ Olivia.

What can I say?
What can I possibly say?

So, I said something like this, the whole time reaching for the right words, something to recognize her own pain in all of this while also acknowledging her brother's unfair ride in life, "I know, baby. I want him to listen to you, too. And I want him to listen to me. But it isn't easy for him. I am trying to help him listen better. And we have got to try to help him listen to both of us, even though it is hard."

"Mama, I am ready for Daniel to talk NOW!"

I scoop her into my arms, because, really, what else is there to do???

"I know, baby."

"Me, too."

1 comment:

  1. Hang in there...there is always worse and I can understand when u have 1 that gets it and 1 that doesnt...i feel your pain...Just make sure u take time for here if u want to e-chat or 2 weeks..tell mom and dad..Hi for me!!