From Michelle. 4 November, 2011.
Dear friends and family,
Thirty days have passed since my last update, and the dust continues to settle. We are more than patient these days, having made peace with the few remaining boxes and piles of detritus that have become fixed elements of our home environment. We gratefully take on the better lessons and greater tasks of building a life: finding a weekly rhythm, reconnecting with friends, building a realistic therapy schedule for Steve and picking up the books and projects that were buried beneath the details and illnesses that characterized our first two months here.
The weekly rhythm poses some challenges, still. We think we find the balance and then something is added or taken away, and we find ourselves surprisingly off kilter. Steve’s flexibility is disabled in more ways than one. He lives large and then he gets sick. Not yet adequately attuned to his limits, neither of us is able to anticipate it. We haven’t found our sea legs yet.
Tony Blair once said, “The art of leadership is saying no, not yes. It is very easy to say yes.” Two people who love the word yes, we are learning the art of no. It is hard to lay down people and opportunities. The gains are not always clear. I struggle to be firm, when we still don’t understand Steve’s limitations. And we have caught the scent of normal life. We hunger for it. No evenings, we say. But then something special arises. Can’t we do it just once? What will the cost be? Is it too much? Should I go alone? Every day the circumstances are different and the choices unique. We make rules and then we break them. The conditions do not fit the particulars.
Even vacation poses challenges. Now we have no clear boundaries and rhythms. People smirk at Steve as he struggles up some stairs. They think he is out of shape. The tour guide is told but does not really absorb the information. The children are the hardest no. Steve still cannot say it to them. We return home and he is sick again.
The gift of no is clarity. First, there is ontological clarity. Our humanity is unambiguous. Our weakness is evident. We begin to accept what has always been true. We open our hands more fully to the grace that is there. We surrender with greater certainty. Running after the approval of the crowd is less possible when you cannot run. Second, there is clarity of purpose. The essential comes into focus. With smaller rations, we are forced to think more carefully about where we invest our energy. There is less waste.
No is a costly, valuable lesson. I give thanks for the discipline, but I still learn imperfectly. Steve has lost 11 more pounds, too much. I cannot seem to fatten him up and his appetite is poor. His gait is still imperfect, and far from what it was. But the other day he managed 10 sit ups. I try to read the signs but I don’t have a map. I’m not sure whether we are headed in the direction of progress or disaster.
But the clarity anchors us. What is essential is who we choose to be as we stumble in this unknown territory and how we interpret the signs. Like the disciples tossed on the waves, we look out and find Jesus walking toward us across the waves. We borrow that quiet certainty amidst the storm. I do not fear him. I know that my transparency allows him to shine better. So much death means more fertile ground for new things to grow. I actively anticipate what is being planted. I know it will bear wonderful fruit if I can allow the seed to be planted deep enough. Opening my heart to the circumstances hurts, but it also gives life. I am grateful for the voice that invites me to step out into the storm and walk on water. I need only grasp his hand.
We are daily amazed by your love, support and enduring grace. We receive your prayers with immeasurable gratitude.
With love and thanks,
Michelle