Monday, December 25, 2006

Heaven Sent


It is a beautiful song, Joy has the voice of an angel. She is singing from the perspective of Mary.

You're my love, my joy, my heaven given boy. What a gift you are to me, Who am I , that He chose me...
I can see it, looking at a child who has turned your life upside down, taken every expectation and plowed it asunder, and you know your love for him will break your heart, again, again and again.

To look in his eyes, and know, you really do know, what a gift from God, the love, the pain, the pure sweet joy, so indescribable. So perfect.

I can see it. This midnight service, I have never been more sure that God has handed me a gift, Others pity me, they see it as a curse. It isn't their fault, they just can't see it.
I see.
Heaven given.
Perfect.

Sunday, December 17, 2006

Winter Light


We went to the zoo last night, with some friends. Lincoln Park Zoo hosts the Zoo Lights, with Christmas lights and animals and Santa and stuff. We went with Joe and Tania and their kids. Joey is Jude's age, and he is autistic, too. It is nice to be with people who understand.

It was a beautiful night, warm and breezy, and there was Christmas music and the boys held hands as we walked around in the night air.

Every time we walked under the speakers Jude would dance, arms waving, and the people would step around him, and he was oblivious to them, only hearing the music. Perfect.

When we got home there was a Christmas card from a friend waiting, with one of my favorite quotes from Willa Cather:

Where there is great love, there are always miracles.

I used to say that to myself, confident in my great love for my children, which seemed so fathomless and all consuming, an entity unto itself, it could make anything happen. Move mountains. Teach my son to speak and read.

My son does speak, and he is learning to read. But tonight I am not waiting for a miracle. The miracle is here, the miracle is that I realize the miracle and the great love are one in the same. The miracle is watching my son dance in the misty lights and not wishing or wanting for one single thing.

Hallelujah. Glory to God.
Merry Christmas.

Thursday, December 14, 2006

Dragon Fish


My friend Robert has a new tattoo, on his bad leg. This was one of the few ink free places left on Robert, because his left leg is mostly scar tissue from a horrible childhood accident. Robert was drug by a car when he was four, and spent months in the hospital with pain and operations and infection. The doctors wanted to amputate, but his father wouldn't let them. So Robert, a small child, suffered and struggled.

When he told me this story, I grimaced, and said, ooh, Robert, your poor mother.

That made Robert laugh. Now he shows me his tattoo of a beautiful koi fish, and he tells me the Japanese legend that if the koi fish struggles and fights his way up the river, and over the waterfall, the fish becomes a powerful, magical dragon, reward for his courage and refusal to give up in the face of difficulty. This bring tears to my eyes, and look away so Robert won't see.

My oldest son Sage loves dragons. I think they appeal to him because they are powerful and can fly above troubles, untouched. Sage is only nine, but I think he would like to fly. I think he is already tired of struggling.

From the moment he was born, Sage had to fight. He was stuck, and when the doctors got him out he was blue and lifeless. He spent the next week on a ventilator, me with my forehead pressed against the side of the incubator, wishing to hold him, watching him fight. It tore at my very being that I could not do this for him, he had to fight and learn to take breaths on his own, and I could only love him through the plastic.

His toddler years were spent enduring painful medical procedures and watching his friends do things he could not, lest he have to go to the hospital and get stuck. He wore a helmet to protect his head. None of the kids gave him a hard time about it, but he hated it just the same.

Not one for sports, my son lives for books and fantasy and stories. They were a place to escape when we, his exhausted parents spent all our time trying to help his autistic younger brother who needed so much, and his baby brother who spent so much time in the hospital for the same bleeding disorder that makes Sage feel so different than everyone else.

Sage struggles in school, struggles to make straight A's even though focusing is almost impossible for his his abstract mind, and he struggles to stay afloat in the dog eat dog world of nine year olds. Sage's heart bruises as easily as his skin, just by his very nature. I wish he could be more resilient, but then I don't, why would I want him to be harder of heart? So I don't have to feel his pain, I suppose, when a classmate rolls his eyes at Sage's dragon poem that the teacher puts on the wall.

I used to climb into Sage's bed at night, when he would wake up from nightmares after a long night at the ER, and sing Over the Rainbow, a song my father sang, and it seemed more appropriate than a cheery song about dancing vegetables or whatever. Sage would ask me to sing it again and again. I wonder if he remembers that, now.

Sage has had testing to see if his attention problems are treatable, and the therapist can't stop talking about how engaging, and smart, and sweet he is. We smile but brace ourselves. Sage does have some differences in how he processes information, she tells us. He can be helped with tutoring. Oh. He does make straight A's, I tell her, it is just that he seems so frustrated all the time.

He has, she says gently, a somewhat negative view of life. He feels different, defective almost.
He sees life as a struggle.

That is because it is a struggle, lady. I think of when I brought him home from the hospital, and sat by his crib, unable to sleep for all the joy and fear in my heart, and there was hope, so much hope, that my son would never feel alone.

It seems so silly now, that I could convince myself that somehow my son would escape the pain of living and only experience the joy.

And there has been joy. No one was ever loved as much as Sage. He makes us laugh, he is so kind that he puts us to shame, and he is compassionate and brave. He, like his mother, feels everything, loves with abandon, and his heart breaks every day. Not an easy existence, but there it is. Lousy clotting is not the only thing I have given my child. And I know he will be okay, even if he does have to swim upstream. I must live with the pain of not being able to fix it for him, of watching him make his way to where he needs to be.

When I see Robert again, I admire his tattoo, but I point out to him that the fish is headed in the wrong direction.

Robert smiles. That, he says, is because my fish is headed home.