Tuesday, January 08, 2013

A Remarkable Heart

My youngest son has always had a remarkable heart. He is quiet and takes his time assessing the world and its peculiar shifts and changes, but the beings he has loved, the things that enchant him, are wholly his. During the time he was in his mid teens, by far his best friend was a streetwise guy from Brooklyn, homeless, forthright, impolite. The guy was a heroin addict and an activist. Gabe adored him.

To see them dance together was to get a glimpse of wild angels. Red was the one person I most trusted with my extraordinary son. When he died trying to detox, a light went out in our lives, but, you know, you go on. I wished for Red four years ago when Gabe was feeling the weight of the deaths of children all around the world. Red could maybe have explained a few things, or I think he could. We’ve become more careful of news and political discussion around my son since then. His heart is too open. He is too easily overwhelmed.

When he was an infant our hearts were synchronized. Well, it felt like that. I’d hold him, feed him, watch him, and enter with him a world of green and golden peace. The wind in the fir trees, the sun against the madrone bark, the sweet call of the whitecrowned sparrow—nothing else existed or mattered. For a moment, all was well, all was safe, all was clear.

Later he asked me to teach him to fly. To this day I don’t know if he ever believed me when I said I couldn’t, that we didn’t fly like the ravens when he was asleep. He had seen many things that he couldn’t do, that we could, that he thought I could teach him.  I tried.

And I tried to keep him breathing through a winter of pneumonias, and managed to do so, holding him in my arms, upright, begging him to keep taking breath after breath, crazy with anxiety and exhaustion. That winter I almost lost my way entirely. But other springs and winters followed, and he grew strong.

We got to look at his remarkable heart some weeks ago. All his life his doctors have reassured us that, though he has Down Syndrome and challenges, he has a good, strong heart. Our latest doc thought, since he had never had an echocardiogram, well, why not. Routine. Just in case.

We watched the heart’s mandala, the flow, the steady dancing rhythm.

The curly haired technician was kind and cheerful. She took twice as long as promised, but we figured she was being extra thorough, ruling out all those problem spots common in the hearts of those with that tiny extra chromosome. It was fascinating, like watching visible music.

And the night our doctor called me with the results—you know how in old fashioned melodrama some one trembles head to foot? I could not stop shaking for two hours.

And then I cried.

And then I started researching.

My son’s unique heart apparently has at least 5 very special variations from normal. They are of the type that would have been expected to kill him before his second week of life.

Yes, he has a very strong heart.

So I’ve been thinking about this world of ours, this new year, all the news and all the struggles.

I could shake head to foot for continued deaths, for rapes, for climate crisis, for fears and follies of this world. I don’t, but yes, often I do weep.

And then, well I do a couple things. I love the moments I have with great tender ferocity. I refuse defeat and despair. And bit by bit, wherever I can, I do what I can to celebrate, create, and honor a world of sustained kindness and vision. To figure out what matters, and hold it closely. To just keep loving, working, loving some more.
(the photo is of Gabe with his dad, on an adventure)