Sitting Close for Comfort

Because he uses a wheelchair, Stross, now 21 years old, is often able to sit close: stage productions, political rallies, concerts, weddings. As companions on his life journey, we - Skye, Mark and I - get to sit close as well. Today we had front row seats at 22-year-old Tad's funeral. Not exactly front pew, but the first row of seats in his church's choir loft overflow. Our elevated position gave us an unobstructed view of all primary actors and action.

Stross was delighted. He took in everything, interpreting scenery and scenes as the morning moved forward. His commentary - eager, excited and childlike - conveyed the disconnect we experience daily. His life, interpreted through a prism of intellectual disability, is locked in time even as it moves forward. The joy we see through him, illuminated by a similarly faceted prism, is ensconced with fears for his future - our future.

Today we watched a family - a mom, a dad and a brother - begin to reshape their future. They said a penetrating goodbye to someone they admired deeply and loved fiercely. A boy who had grown to need a walker and then a wheelchair. A young man who had figured out a way to attend college, while enjoying every life-changing experience possible regardless of perceived limitations. A man who had recently begun making plans for what might come next.

But before next things could come, his heart - a kind and free-spirited life force that had helped him collect hundreds of friends - burst suddenly and swiftly; so today we joined his family in saying goodbye.

I have imagined what such a funeral might be like for us. As in, I have imagined such an event - for us. Today I watched it play out in a familiar way. Not identical. But familiar. Close to what I've envisioned should such a fate befall us, but not quite identical in many ways. Of course, my imaginings reform as life reshapes me, but the grief, the pain, the loss - those remain. The greatest, perhaps, is the loss.

I have been watching Skye, already feeling the pain of separation that his own move to college will bring just one year from now, and have recognized how grieving has begun. Our family is acquainted with loss - the type that infiltrates a day's most ordinary tasks. Because life insists on moving forward, goodbyes are part of each day. Still, my heart hurt for Skye as I heard Tad's brother, Cody, talk about an ordinary Friday night spent with his brother, doing the kind of things brothers love to do together. I hurt as I watched Skye recognize and vicariously experience deep loss.

I hurt for Mark too. Fathers should not have to feel this brand of helplessness. Tad's dad could not have helped his son when he most needed him. Mark knows what that means. He lost his innocence about suffering long ago. Mark has lived the type of frustrating and near-debilitating helplessness that Tad's dad might be facing now, only our son is still with us. For now.

That's the most pain-filled part. Not knowing if we will outlive him or if he will outlive us.

No. That's not it.

The most painful part - penetratingly painful - is not knowing which scenario would hurt the least. For him. For Skye. For us - Mark and me.

Goodbyes are difficult. But the not knowing - that may be the worst of all. We know such not-knowing well.

Now hope that is seen is not hope. For who hopes for what is seen? But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words. And God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. - Romans 8:24-27 (NRSV)

I remain grateful for the opportunity to sit close in life. To see scenes play out that others choose to view at a distance. I am also grateful for my capacity to vicariously live experiences that enrich life in divine ways.

And as for the young man who sat next to me today - the boy in a man's body who was delighted to watch and see and ask questions and wonder - I plan to keep sitting close to him and his brother and his father for as long as humanly possible, sighing with groans too deep for words to express.

In Memory of Tad Clovis Venzke . . .