December 22, 2010

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!!!


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.

1 comment:

  1. I love your blog. As a mother of 2 kids:the 6 year old on the spectrum n a 5 month old who is ok i relate to this post
    Stay strong
    God bless,