Ain't No Yellow Brick Road

“Why, you do not even know what will happen tomorrow…” James 4:14

Far too often, we walk this path worried about what tomorrow will bring. We look at our child – our beautiful, disabled, atypical child – and we wonder what will become of him.

We hear of what has happened to others, farther along this same path. We research the odds of his condition changing into something worse. We know more problems may be touched off by growth spurts, puberty, and other milestones that loom. Instead of counting on the best outcome, we expect the worst. Instead of celebrating the moment, the hour, the day, we let our frustrations ensnare us.

We get so involved in thinking about tomorrow – the problems that may come, the money we won’t have, the permanency of the change he brings to us -- that we let tomorrow rob us of today.

God has given us this day, this moment, this hour. We must not let it slip away.

We must make our child the focus of our life. We must help him carve out space in this world. We must see to his needs and manage the doctors, the therapists, the medicines.

But more importantly, we must guard this moment and give it to him. We must make ourselves available and present in his life. We have to be willing to share this moment, this hour, this day with him in a way that lets him know he is special.

He is special not because of his needs or his wheelchair or the impairment that sets him apart from his peers. He is special because he belongs to us and his life comes as a gift from Heaven. We must take the time to let the gift – all of it – unfold and open into our own life.

We can no more predict tomorrow than we can make the sun and moon trade places. While we must plan and prepare for what will come – there are critical decisions to be made and plans to be laid -- we must spend ourselves today.

Today may be our last chance to love him as only we can do.

Cancer may claim us. A heart attack, a brain tumor, a stroke may kill us. Divorce may wreck our marriage. An accident may end it all tonight. The great paradox of our world is that the human being is so incredibly resilient and yet, in many ways, so amazingly fragile.

And the future, those days and years we love to talk about, think about, even dream about, make no promises to us. They always stay a few steps ahead, far out of reach, unwilling to do anything but dance before us in tantalizing fashion.

God is in charge of our tomorrows. Today is here. We have our child. We have our life. We have a chance to make it special. We must not let tomorrow rob us of this moment.

We all stumble in many ways…James 3:2

There is no disgrace to be found in falling down. Few, if any of us, will complete this journey without tripping or stumbling or falling down into the dust and the grime. Most of us will fall more than once.

Our stumbles, our missteps, our miscues will be many. This is true for all who are human and, unfortunately, tends to be the case to a greater degree for those of us who parent a disabled child.

There are so many details to mind, so many concerns to monitor, so much turmoil in today and tomorrow. We have doctors to see, therapists to work with, pills and other medicines to administer. We have bills to pay and paperwork, always loads of paperwork, to sort, to file, to oversee.

Without the grit and the grace we draw from Christ, without the strength of his word, his promise, his hope, there would be no reason to rise once we had fallen. We would be better off to stay there in the muck, wallowing in our disappointment and heartache while our tears fell.

But Christ knows us well. He understands the human condition and our inability to be perfect. He expects us to stumble. He knows we will trip over things, stub our toes so to speak, and bang our shins while we walk through this uncertain place.

What’s more, he knows we will stumble in our own personal walk with him and we’ll make miscues and mistakes as we swim through the flood of tough waters that comes with our child’s condition. He has promised not to condemn us for mistakes in either arena.

Therefore, we should not condemn ourselves nor punish those around us.

Rather, we are encouraged to remember we all stumble. We all fall. There is no disgrace in that. But remember, too, that Christ expects us to rise once more. He extends a hand, he provides the grace, he infuses us with the grit and the hope that we need not only to rise but to rejoin the race.

In doing just that, overcoming the stumbles, rising once we have fallen, and then brushing ourselves off, we teach our children there is no shame in the misstep, the miscue, the momentarily lapse. What’s more, when we plunge once more into the life we are called to live, we teach our child the value of perseverance and the beauty of the second chance.

…love comes from God. 1 John 4:7

We have our days walking this path with our disabled child when we feel as if God has abandoned us and him. We feel neglected, overlooked, forgotten. We wonder at the depth and breadth of the task at hand and we feel small and weak and unable.

Some of us fall to our knees and cry for a sign. Others pray, in dutiful fashion, remembering to say the right words, in the right order, to achieve the right formula. Still others give up on God altogether, choosing instead to grow bitter, to let their wounds fester, closing their hearts to possibility.

But we do such things at the risk of missing out on the love being showered down upon us and lavished upon our child in small but consistent, frequent, and unmistakable doses.

All love comes from God, John tells us, which is to say, you should be seeing God quite regularly in the faces, in the hands, in the words of those who encounter your child and do more than just pass on by.

Choose to find God’s love. Look for it, earnestly, faithfully, and with as much innocence as your spirit will allow.

See it in the friendly man who stopped your child in the store and offered to send him to the hockey game. See it in the businessman who left the restaurant without telling you he had arranged to pay for your bill. See it in the athletic young woman who stopped on her run down the sidewalk and chatted because your son said, “Hey, what are you doing?”

Find God’s love in the church family that makes space for your child in Sunday school, in worship, on the playground. See it in the eyes of the nurse who took extra time to provide an answer to every one of his questions. Hear it in the words of the surgeon who wasn’t a part of this operation, but stopped by the room anyway to check on things.

See it in the carnival barker who rigged the game so your child won. See it in the hands of the workers fashioning a new house that works for him. See it in the face of the neighbor who let him “help” her mow the yard, rake the leaves, unload the groceries.

See it in a hundred places more where people stopped, chose to act in such fashion that your child felt not like somebody with a problem but somebody worth listening to, worth sharing with, worth talking to, worth caring about.

And when you see such as this and the weight of it all drives you to your knees in humility and thanksgiving, whisper a prayer of praise and an apology for forgetting how God has spoken and splashed his love into the your life and that of your child day after day after day.

From the lips of children and infants you have ordained praise…Psalm 8:2

…and a little child will lead them. Isaiah 11:6

Church and all that it entails, along with Sunday worship times, are important in Bryson’s family. Most of his relatives – grandparents, aunts, uncles, cousins – attend church regularly. Several go two or three times a week to some form of worship or church gathering.

From trips to visit these folks as well as being part of a church community in his hometown, Bryson has been learning about prayer, about Jesus Christ, and about the God we worship since he was tiny. As is the case with any child, it’s not always clear what he understands and what is lost. We can never be sure what he truly thinks about God or church or the promise of Heaven.

But sometimes, God gives us a little glimpse into the workings of Bryson’s spiritual growth.

On Easter, Bryson arose to find the Easter Bunny had stopped his grandmother’s house. We were there as part of a spring visit and on that morning, before church and worship, Bryson discovered a small basket into which had been tucked his favorite candy, a toy, some other treats and two plastic eggs.

He took some time to pull each gift out of the basket, expressing his joy for the M&Ms and the other treats and then shaking the plastic eggs. One held something light and undetectable. The other, when shaken, emitted the jingle of coins.

Bryson pulled both apart. In one, he found a $10 bill. In the other, four quarters. $11. Enough to make a 10-year-old in a wheelchair feel flush. He had enough money, for instance, to download some of his favorite songs to his MP3 player.

He had enough money to buy one of his favorite treats – a Blizzard from the local Dairy Queen. Of course, he could have saved it, tucking it into a secret place where he already has accumulated cash and gift cards to be spent later.

Although he is still learning exactly how money works and how hard it can be to come by, he clearly understands that it has value. He knows it can be used to buy basic needs – food, clothing, rent, medical supplies – as well as treats: his favorite new CD, a shirt he wants, a new headset for his MP3, a new game for his PlayStation.

But on this morning, without cajoling, coaching or coercion of any kind, Bryson decided this money belonged elsewhere. On this day, he told us, he wanted to give this money away.

“I want to put it in the offering at church,” he said.

Not just one of the quarters. Not just a dollar. He chose to give it all up. The whole of his unexpected find delivered up to God.

A gift, really, not just for God but for all of us who saw his joy at finding the basket, handling the treasures therein, and then giving all his money away.

Get rid of all bitterness, rage, and anger…Ephesians 4:31

Only the fool among us would think this journey free from any kind of bitterness, rage or anger. We are too human, too frail, too broken by what has transpired to suggest we can easily dispatch such powerful emotions.

Our child is less than whole. Our dreams for him and for our life are shattered. Our future stretches out with more uncertainty than we can imagine. The holes that have been punched in our plans, in our future, in the very fabric of our day-to-day lives make it easy for every kind of emotion to spill into us.

Our spirit, our heart, even our faith is put at risk, threatened by such as bitterness, rage, and anger.

But we must not let them win. They cannot be allowed to overtake us, to become the defining traits of our character. We must not permit them to squeeze us in such manner as to make of us an empty, dried out husk of what we were before this child arrived.

Buried in the line from St. Paul’s letter to the church at Ephesus is this abiding truth: You can be a in a storm. You don't have to let the storm be in you.

This is a truth that we as the parents of disabled children must hang onto, claim for ourselves and live out in the days and months ahead.

Make no mistake: Life with a disabled child is a storm. It’s a big, angry, dark storm filled with pelting rains and rolling thunder and frequent lightning strikes. The winds blow long and hard and threaten to peel away our hope, our peace, our faith. The rains threaten to erode the foundations of our life, our human existence.

We find it easy to lose our way in such darkness.

But if we strive to keep the storm on the outside, we find it possible to navigate such tough times. By taking hold of the promises of God, by letting the very hand of the almighty take us, shape us, guide us and our child, we can keep the storm out rather than letting it well up within us.

It’s not an easy or a carefree time. The road will never again come easy. The storm will come and go in its ferocity. So we must always do what we can to keep the bitterness, the rage, the anger far from us. They are emotions that have no place in our lives and they can not be permitted even the smallest of footholds within in our hearts or spirits or even our words.

When you find even a hint of them, dig them out by the root, cast them far, and see to it that you flee from those who would encourage you to make them a friend.