Tuesday, June 20, 2006

Fear and wonder with a girl's brain

Today I live with a secret, but I'm not sure what the secret is.

Maybe it's not even a secret. The brain of my three-point-five year old daughter is a mystery. Something in her brain is not working like it should--at least according to normal charts and anecdotally-observing professionals and armchair pediatricians/family therapists/social workers. Who has the time to know a child like a parent? When does a parent even have or make the time to really know their child? Certainly my misplaced priorities run through my own brain with the production speed of a Chinese shoe factory. What have I seen? What can I do? I can love my daughter. But how can my wife and I love her so that she can grow and develop while not running ourselves into the ground?

We seek doctors and specialists to give a name to what we see. We seek friends to give meaning to our family experience, to give us insight, to walk with us in the midst of questions, grief, anxiety and hope. We call upon God to be gracious, loving, wise and healing. We live in a murder mystery scenario where we saw clues of behaviors and interactions, which could have added up to something sooner, but didn't. My wife and I seem more closely knit together as we try to navigate providing an environment in which kks can thrive.

And now we wait. I would like to be able to write about what is going on in the brain of kks.

I cannot. I do not know.

I see a compassionate child. A perceptive child. A joyful child. An athletic child. A musical child. I have great hope that she can tell me about these things that I see. Right now, she can't tell me those things beyond a single sentence exchange. We are seeking professional help as quickly as we are able to attain it.

Some people know about the scenario I describe, some do not. If this writing is news to you, it is only because my wife and I only occasionally gather enough energy to tell people what is going on in our lives. Our lives have changed significantly in three weeks. In some ways we know little of what goes on. Please do not take this lack of information as a judgment of our relationship.

Some might tell us that prayer is something we can do.

Prayer for me is also a mystery. Jesus recognized that people use prayer in all kinds of ways, many of those uses more indicative of sin than grace. I see prayer as it is used in my culture as a social buffer rather than as an opportunity to face God and self. I have become a product of my own culture. I don't even know if I trust my own prayers. However, I know that in the core of my heart lies my deepest desires, and I believe that God is there and at work. In that core is my hope that kks will thrive--connecting with God and with others, experiencing the joy of using a gift from God to help others and that she can tell about the God who created and claimed her. What does that look like? I do not know. I ask that those who love kks, love me and my wife, to join us in that hope and the action that flows from that hope. Some will walk with us closely, others will drop in on our walk. All who join us will be valued, sometimes explicitly, always in the meditations of my heart. We do not have the time or the energy for judgment and ridicule...my own dark side takes care of that.

My grace is in my wife who loves me and works with me as an advocate for our child in gentle ways. My grace is in friends (some family are included) who give of themselves so that we may see God's grace. My grace is in my newly-found relationship with kks, who fights to tell me what is going on in her heart and mind, and finds creative ways to get around what parts of her brain cannot accomplish (yet?). God's presence and work is a holy mystery, and I sit in awe and wonder.

In the meantime, I need my rest, because kks needs me healthy so I can be a strong advocate.

Kks also has a sibling on the way...due October 28th. Amazing how Lent/Holy Week/Easter, a trip to the UK, the bomb of a fearful child evaluation, and the ensuing maze of judgment, bureaucracy, research, medicine and education can distract from the news that God continues to create, and we get to be a part of it...another example of living hope...

Peace be with you.


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