What It's Like

Some days I feel like crying. Other days are magical, filled with wonder and love and discovery. Some days I am busy with living and forget for a little while that my child is different, and others are not forced to confront the issues of life and death and the definition of worth every day. The best days are a mixture, I cry a little, laugh some and remember how blessed I am.

It is hard to share my sadness; I never want to give the impression that I wish my child were different, that he is defective or lacking somehow. He is what I wanted, whether I knew it or not. He is just as much an answer to my prayers and hopes and dreams as your healthy child running on the playground, only God had a different idea about what would make my life complete than I did. Sometimes I struggle with letting go of my plans and imaginings, some days I look at the world and then back again at my little boy and wonder how the two might get along, but just like you, my child takes my breath away when he smiles.

There are times I feel I have an advantage, I have been freed of the illusion that things will always be okay, and I never take one smile, one hug, one moment for granted. We all love our children, but there is a capacity to savor that I might not have had. What a gift.

So, don't feel sorry for me, and don't tell me to be strong. Enjoy my child with me, rejoice with me, cry with me. See the magic behind my little boy's eyes that I just can't find the words to describe. That is understanding I need, and the very definition of friendship, hope, and love.

Pennies

We are always longing, my family and I. We live with a beautiful mysterious creature who reveals himself, just a little at a time. Appearing and disappearing. I thought perhaps I was the only one who sat and wished, wished and wished to hear what is inside of my enigmatic little boy.

I used to long for my husband, when we were single, and I thought he loved me but just wasn't sure enough, or brave enough, to let him near me. But I would watch him move and be and talk with friends, and I longed to know him, to hear what his heart had to say.

Sage was asked to draw a picture of his goals at a workshop. His goals were to get more stars at school, and there was a drawing of stick figures with boxes. I asked him what it was.
"That's me and Jude," he says, looking down. "What are you doing?"

"We're talking on walkie talkies," he says.

We are all wishing, and longing. Waiting.

Last night I put Jude to bed, and as I left, I heard him call, "I love you.." He had never said it before, and I turned quickly to look at him.
And then he started to sob.
And sob. Heart breaking, gullywashing sobs that had nothing to do with going to bed. I held his head and tried to get him to talk, tell me why he was crying.

Even if he could tell me, there may not have been words. Maybe he's been longing, too. We
are all wishing and waiting. Little by little, wishes are coming true. We all just have hold our pennies, and wait.