The Disabled Life: Moses, William and Me

I remember sitting around Wil’s plexiglass bassinette in the pastel, faux-warmth of Shand’s NICU II nursery, explaining to my mother that our blond-headed, blue-eyed premie would soon need open heart surgery to repair a large VSD, an ASD and PDA (grim acronyms I had learned only a week before). Of course, I also had to explain the diagnosis of Down Syndrome. Wil would be developmentally delayed – mentally retarded. He would suffer from low muscle-tone, making it more difficult to raise his head, to lift his body, to crawl, to walk and to speak. In addition to his cardiovascular issues, he would be liable to a whole host of health problems, such as hypothyroidism, gastrointestinal complications, spinal malformations and childhood leukemia. Chances are that William Hayne Walden, named after my father, would be sterile. No children of his own.

As I enumerated the implications of Wil’s extra chromosome (some only possible, others likely) I was stung again by my own prognostic pessimism. I watched Wil lay there, with my mother stroking his peach-fuzzed head, small and helpless. And I loved him. Was it pity? At the risk of indulging in existential cliché, I paused and said, “We are all disabled, aren’t we?”

Why did I just say that out loud?

Wil’s enfeebling condition and diagnosis was an indictment against us all, I thought. Perhaps I felt self-pity. And then I realized that what I had sensed was more akin to the fear of God. Wil was a picture to me, all of a sudden, of the human condition. Love and pity and fear.

In the Book of Psalms there is one entry by the man named Moses. In Psalm 90, the hoary Jewish patriarch reflects on our frail and fallen form.

Before the mountains were born or you brought forth the earth and the world, from everlasting to everlasting you are God. You turn men back to dust, saying, "Return to dust, O sons of men." For a thousand years in your sight are like a day that has just gone by, or like a watch in the night. You sweep men away in the sleep of death; they are like the new grass of the morning-- though in the morning it springs up new, by evening it is dry and withered.

We are consumed by your anger and terrified by your indignation. You have set our iniquities before you, our secret sins in the light of your presence. All our days pass away under your wrath; we finish our years with a moan. The length of our days is seventy years-- or eighty, if we have the strength; yet their span is but trouble and sorrow, for they quickly pass, and we fly away.

Men can be favorably compared to other men, but never to God. Moses spent his entire life reflecting on the power and righteousness of the Almighty as revealed to him and his people in Egypt and the vast stretches of the Sinai wilderness – a power and righteousness set in sharp relief against the patent weakness and wickedness of men. All men. Even the great patriarch himself was refused entrance into the land of Canaan - the promised rest and goal of their forty year pilgrimage - because of his own moral failure at the waters of Meribah. At the end of his life he was granted a panoramic view of “the land flowing with milk and honey” from the great heights of Pisgah; but that was as close as he got. Moses breathed his last in the Moab valley below, and was buried in an unmarked grave on the wrong side of the Jordan.

He knew well his own frailty. When first confronted with the deity named “I Am Who I Am” in the burning bush, Moses cowered before the glory of his forefathers’ god.

Do not come near here; remove your sandals from your feet, for the place on which you are standing is holy ground.

Moses hid his face in fear, and the Lord spoke. He cowered again at the command issued: “So now, go! I am sending you to Pharaoh to bring my people the Israelites out of Egypt.” “Who am I,” asked Moses, “that I should go to Pharaoh, and that I should bring the Israelites out of Egypt?” Yet, even after the great “I Am,” had repeatedly reassured him, Moses protested:

O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.

The Lord’s patience was growing thin. “Who gave man his mouth,” He interrogated, “Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord?”

I thought about that as I looked at my son. Who made him? Who formed him with his frailties and weaknesses? It was an awesome thought: frightening and hopeful.

I thought about that again a week later when a pastor and friend of mine called me from New Jersey. I remember only his last remark: “Wil will be an incredible blessing to you and to God’s people.” I wept. And though I didn’t know how exactly, I believed his words would prove true. I hoped.

Moses hoped. Even while languishing in the desert those forty years, without a homeland, and with hope deferred, he was yet at home with his God. “Lord,” he confesses at the start of his psalm, “you have been our dwelling place throughout all generations.”

The Lord was Wil’s maker; skillful hands had formed our son, tenderly and intimately in the secret place (Ps.139:15). And into those hands his life would be repeatedly entrusted in the years to come - whether standing in dreary, antiseptic rooms of hospitals agonizing, or sitting on the edge of our queen-sized bed with anxious hands folded. The God of Moses and Wil has been our home, our rest and our hope.

Even to the bittersweet end of his life, Moses’ stubborn hope and vigor were strong. In the words of the Letter to the Hebrews, “he was looking ahead to his reward” - even as his eyes surveyed the promise land for the last time.

Indeed, when all was said and done, God would establish the work of his servant’s feeble hands (Ps.90:17), and prove the utterances of his stammering tongue.

Wil’s infirmities boldly underline my own before a sovereign and holy God. They remind me that I am on the wrong side of the Jordan: profoundly disabled and utterly helpless. Ironically, however, in his weakness Wil has great power. He has the power to frighten us, reminding us that we are, after all, merely men. He shows us plainly our own brokenness.

But he also has the power to delight us, charming us with his easy smiles and irresistible laughter, winning us with undeniable loveliness and grace. And in this - in Wil’s power to bless me and those around him (whether then, as he lay silent in a NICU isolette, or now, as he waddles cackling down the grocery store aisle), in sharp relief to his obvious frailty - the graceful power and goodness of God is clearly demonstrated for all who care to see.

He is wonderful.