Friday, September 30, 2005

Why the title?

Stretch marks - Buddha lessons from my children

I have often thought of starting a teen-pregnancy prevention movement educating girls about the ins and outs of pregnancy. The curriculum would consist mostly of my showing all of my stretch marks (no, they do not become silvery almost invisible "trophies") and discussing the joys of morning sickness, sleep deprivation (yes, I am still talking about pregnancy) and "sharing" space within your own body that you never really thought you would have to sublet.
I hated pregnancy, every doggone moment of it.
I LOOOOOOVE being a mother!
But there are definitely stretch marks involved. They start during pregnancy, creeping across the body. They continue post-partum, all over the psyche.
And the wonderful thing is that whether they are physical or psychic, they teach the same thing: having kids is about letting go of control, of neat-and-pretty, of perfect and grabbing hold of confusion, of messy, of whatever you've got at the time.
As it turns out, that's pretty much what Buddha was trying to teach.
So it is for Buddhists and parents: the more you think you're in control and everything will be perfect, the more you will suffer. Yet when you can let go and be in the moment and in the messiness and confusion, the more you will reside in joy.

Thursday, September 29, 2005

Over a year and in and out of weeks

Last night I spoke to local and state legislators about my son and how far he has come in a year. It prompted me to look back at where I was a year ago - struggling to communicate with him....

September 2004 - It’s like being under water, isn't it? Everything sounds muted and dull. Sounds thud in without any “brightness.” Music is fine, still interesting with enough variations of frequencies to be groovy and fun. But some sounds: “em,” “ess,” “eff,” “oo,” don’t make it in at all. They disappear right in front of your eyes - like the thin fingers of rain on the desert that evaporate before ever touching the ground. You grasp at the words for a while, thinking if you just reach out far enough, strain to hear, they might make it in and be understood. But after a few minutes, you discover it’s the same as always, hopeless, frustrating, and futile. You give up and zone out. Then, just as you have retreated into the sounds within your head, your thoughts, or the beating of your heart, an outside buzz, hum, or beat intrudes, confusing your silence. Then, you cup your chubby little curled up hands over your ears and look around trying to get some recognition and some relief from the sound you so earnestly sought out not moments before.

I don't know. This is my best guess of what the world sounds like to my son.

Kuruna only says Da-da and ghnh-ghnh (for "nu-nu" or pacifier). He began saying those words at ten-months. Eight months later, those are the only words he can say. He has gotten by until now solely on his irresistible grin, his three dimples and the twinkle in his eye. Kuruna can’t tell me what it sounds like in his world. I can’t ask Kuruna what he hears. He has no language. We have taught him some sign language, but he is slow to pick it up and limited mostly to signs for “food” “more,” “drink,” “all-done,” and two social signs “so big” and “big love.” These signs--and lots of hugs and kisses--get us through a typical day. But Kuruna’s inability to express more than the bare minimum of his needs increasingly frustrates him and us.

Kuruna and I, we are straining to listen to each other and to be heard.

He screams at me. I yell at him.
He grasps at my words. I grasp at his signs.
I ask him, “who am I?“
He says, “Da-da.“
He screams.
I ask, “More food?“

We can cover the important stuff, like “big love.” But the nuances of communication are lost in this huge gulf between us.

There’s a sign Kuruna uses that I did not teach him. I wish he could tell me what it means. Sometimes, Kuruna puts his chubby fists over his ears and looks around plaintively. I think he means that in spite of what he doesn’t hear, whatever is getting in is “too noisy,” but I am not sure. Maybe he is inviting me in to his world. “Just put your hands over your ears, Mommy,” he may be saying, “It sounds just like this.”

Wednesday, September 28, 2005

3-5 minutes

Tonight I will address a room full of people about my son and his progress over the last 12 months. I have 3-5 minutes to do it.

The purpose of the meeting is to give parents the chance to talk about the support we have gotten from our local parent-child center. The Family Place is wonderful! Our case worker is a terrific warm friend who has helped us through many a frustrating day. With their help, Kuruna, who last year did nothing but sit on the floor, tap blocks together with his fists and scream "Da-da," has blossomed into an active communicating boy.
I won't bore you with the details. Kuruna has over 200 pages of medical reports generated since last summer. Suffice it to say, he underwent every hearing, vision, metabolic, genetic, disease, neurological test known to his doctors. He has been under anaesthesia three (or four? I've lost count) times. We still do not have a diagnosis besides "developmental delay of unknown etiology."
What we do have is an amazing team of therapists who have been working with Kuruna since last September. It is because of them that he can now walk and run, feed himself, pull on a shirt, hold a crayon and draw a circle. It is because of them that he can say and repeat words, turn the pages of a book and help me sing songs. And it is because of them that he can now say "Mommy!"
Wait, there's more! Now that Kuruna is approaching three, he must make the transition to the school system. This team, lead ably by our case worker is expanding to include a occupational therapist, a nutritionist and an early educator to help us make the transition.