Archive | January, 2012

Wish I May, Wish I Might

25 Jan

may 13 - evidence

When you have a child with Down syndrome, you have lots of dreams and goals for your little one. Some of them are simple — or I should say, they sound simple to most people — dreaming of the day he will walk, or say your name, or sleep in a bed instead of a crib, or sit at a table in school and complete a project instead of abandoning it in frustration.

Our son is 3 now, and all of the mini-dreams I mentioned have come true for him. In each case, it was a time for much rejoicing and the marking of a true turning point in his life, and in ours. I often feel like special needs parents have been given a great gift, because we appreciate the simplest things so fully. These little victories come in brilliant starbursts, unexpected and awesome to behold.

Some dreams are vaster. When you are still at the beginning of your journey like my family is, these big dreams often seem as out of reach as the next galaxy. The wish for full inclusion in a regular classroom; for a college education, a driver’s license, a job and a life of his own, hopefully with a partner by his side.

I hold these big ideas for my son close to my heart. I do. Like any parent, I want them all. But if I had to paint a picture of my fondest wish for him, it would look like this:

It is raining, and the day is gray, but warm. There is a playing field with short green grass and a mist hovering close to the ground, giving everything an ethereal quality. A group of teenage boys have finished their pick-up game and are walking off the field, water dripping from their hair and their shorts, mud clinging to their soles of their shoes. They have played football, or soccer or baseball, or maybe they’ve just completed a run.

Despite the sogginess, they are not rushing, not desperate to get out of the rain. They embrace it, because they will soon be men and men do not trouble themselves over a little rain.

They have everything going for them, and people take notice of this because it shows in their eyes. They have found a place in this world and it is called self-assurance, tenuous though it is at this tender age. Here is their secret: they walk separately but together, a temporary tribe. Some of them have matching gaits, step by step, but they don’t notice that. Maybe they are laughing, but maybe they don’t look at each other at all. They don’t need to. They are friends.

Among this group is my son. Walking as tall as everyone else, smiling but quiet. Thinking, like everyone else, about his victories and mistakes on the field, and the pizza and soda that awaits. He doesn’t notice me, because I am not there. He doesn’t need me to shepherd his every move now. But when this happens, I will know it, somehow I will know about this eternally simple day that nonetheless shook the sky in my little corner of the world.

The door to our house will open, and he’ll say “Hey Mom, I’m home.” I’ll want to look slightly annoyed because he has forgotten to wipe his feet and now there is mud on the floor. But this time, I’ll probably let it go. And that night, I’ll stay up late imagining a new dream for us.

He Came Bearing Whimsy

11 Jan

In this season of tallying up, starting fresh and counting one’s blessings, I am grateful for many things: my loyal readers, a healthy family, a funny husband, loving parents and friends, a comfortable house and Carolina sunshine.

But in particular, I am also grateful for my son’s outlook on life. You see, he is a 3-year-old with Down syndrome, and among the many things this means is that he takes things literally and doesn’t interpret things the way the rest of us do, often to comic effect.

One recent ordinary Sunday, I was making lunch and our daughters — ages 6 and 3, our son’s twin — were coloring. Our son was flitting around from thing to thing as he is wont to do, and my husband was putting up shelving in the garage using a drill. From inside the house, the sound of the drill was amplified and each time it hit the wall, it made a high-pitched buzzing/trumpeting noise that sort of sounded like a large animal pushing against the wall, noisily wanting in.

To our son, who loves animals, this sounded exactly like an elephant. He animatedly made the sign for elephant and said “El-phant!” Each time the drill made the sound, he would run over and pull at me, saying “Mommy! El-phant!” I would smile sweetly and say “Yes, it sounds like an elephant, doesn’t it?” How cute, I thought.

But it didn’t stop there. Pretty soon, his excitement reached a fever pitch and he was standing on a chair, emphatically saying “EL-PHANT!” Not just once, but multiple times. And he was looking at the rest of us going blithely about our business, totally unenthused about the angry elephant sound. How boring were we, he seemed to be thinking, how unmovable. Humph, was his expression.

I Bring You Love . . .

Well, enough of this elephant business, I thought. It’s time for lunch. “Go wash your hands,” I told my son, pointing to the bathroom, which was right on the other side of the wall from the elephant sound. “But…” the look on his face said, wordlessly, as his expression turned into a pitiful little pout. He pointed to the bathroom and said softly “El-phant?” Mommy, you seriously want me to go in there WITH THE ELEPHANT?

Boom, it finally hit thick-headed Mommy. He did not think it SOUNDED like an elephant. He thought it WAS an elephant! I nearly melted away at the comedy and pathos of that thought. Poor kid! No wonder he was looking at us like we had lost our minds. I laughed delightedly, we all did, as I explained what he was thinking and had my older daughter accompany him to the bathroom to show him there was no great beast waiting its turn at the sink. (“El-phant; all gone,” he said matter-of-factly.)

Then we all gladly took him into the garage to show him what was really making that noise. But he was not swayed. Every time the drill buzzed, he still said “El-phant!” Exclamation mark his.

And I felt slightly jealous. After all, wouldn’t a world where pachyderms stopped by for PB&J be infinitely more exciting than one where toddlers took naps while moms swept crumbs from the floor?

Trumpet Trumpet. Stomp Stomp.

Happy Belated New Year!

11 Jan

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