This journey as the parent of a disabled child is a tough, difficult walk. This, we all know. But we sometimes forget that it is also meant to be a lesson. We are learning -- through our suffering and that of our child -- about life, about love, about God.

We have, in essence, been placed in a special kind of school.

The challenge for each of us is not to long for the time of our dismissal but to realize we will not graduate until we die. This is the classroom in which we will spend each of our days and we can choose to discover all that we do not know but are meant to or we can simply surrender to the life of victim: often bitter, consistently confused, and mournfully wounded.

Christ is our most dramatic example of learning through suffering. He learned – and taught – the ultimate lesson on obedience, giving up his throne and glory and humbling himself, taking on the suffering that came with his cross, for us. In him, we see all that we are not.

His was the ultimate act of obedience, the ultimate act of suffering.

To follow his lead, we must give up the desires of us; we must set aside all our ideas about “me.” What I am, what I can do, what I can be are determined by my willingness to obey God, to obediently follow the plan for life he lays out for me. This includes, of course, the ups and the downs, the joys and the sorrows, the times of frenetic celebration and the days of soul-deep suffering that accompany us as parent of a disabled child.

We are being educated about who we are, about who God is, and about what he can do when we give up the desire to be the captain of our own fate. The helm belongs to him and we will do our best when we let him steer us into the places he wants us to live.

There are many lessons to be learned on this journey. Some are meant for us – meant to reshape us, to nurture our faith, to reveal God in deeper and more meaningful ways then might have previously thought possible.

Other lessons are meant for those around us – friends, family, even the world are large. We are meant to take these lessons in and then share them with others. They learn because of this special education we are receiving as we navigate life with our disabled child.

The key, of course, is to remember it all starts with our obedience, even when it means we will suffer.

A few days ago, as my family cruised along the interstate toward church, I happened to catch sight of my son, sitting just behind me, in his wheelchair, with his arm lifted skyward.

Gospel music – at his request – was playing on the radio and as he tried to sing along, he lifted his hand up, toward Heaven.

Tears filled my eyes behind my sunglasses. I could not help but be moved by the sight.

Inside the Baptist churches of my youth, few were the times I can remember anyone, young or old, lifting a hand toward heaven or cupping their hands before them, as if waiting to catch grace falling from above.

Swaying to the music just was not done, except for very special occasions. We wore our suit coats and our ties and our collars buttoned-down. Our sisters and our Moms wore their dresses and their blouses and their jackets buttoned up tight, as well. Most of the time, our hearts seemed to be that way, too: buttoned-up, tight, unmoved.

The songs we sang came right out of the hymnals; and only every so often did it seem as if the words we sang came from anywhere near our hearts. It was church and that was the way church and worship were done.

Bryson, thankfully, is growing up in a different kind of place. He has never worn a shirt and tie. He has never put on a suit. He wears mostly men’s exercise style warm-up pants, polo shirts or Henleys, and tennis shoes over his leg braces. He has rarely held a hymnal, in part, because of his uncooperative, permanently bent left arm and hand.

Music, however, is a source of great joy with him. He takes to music of all kinds, particularly country and gospel. Country usually carries the day. Gospel reigns on Sundays and at other times when – I can only assume -- he hears a different call inside his head or his heart.

Some Sundays in church, he wants to sit where he can hear the music of worship and see the praise team and the band on the stage, leading our congregation through songs of praise, of hope, of worship. At times, inside the sanctuary, he has rolled his wheelchair out into the aisle and a little closer to the stage, to improve his view.

Often, at some point, he lifts a hand skyward. He seems to understand – better than many adults I know – we are meant to reach for Heaven.

No matter how distant or how far it may seem, no matter how estranged we may be from our God and our notion of hope, no matter what may be pressing down upon us day in, day out, Bryson seems to realize an arm lifted to Heaven is so much more than a hand sticking up in the air.

It is an expression of the music within his heart, the melody and the hope that make his spirit dance. It is an outward expression of his desire – to connect with a God and a Savior he only now – at 11 – is just beginning to understand. It is his way of saying, “Here, Lord. Here I am. I want in. I want you. I lift my hand – and this broken, bent, imperfect body of mine – to you. Take it. Take me, Lord; take me with all my hurts, all my flaws, all my imperfections, with all my hope.”

In our quiet moments alone, sometimes when he awakes and needs help in the still of night and, at other times, when he seems to need a victory or reassurance or the reminder that he is a special kid, I whisper to him: “Bryson, you are my hero.”

The truth is, I think of him as hero because he refuses to let his challenges and his handicaps keep him from enjoying life. He refuses to let his wheelchair dim the light of his heart. He refuses to give up the fight for hope.

And because, every once in a while, when I happen to look up and take notice, I see him, arm raised above his head and his wheelchair, pointing me toward Heaven.

As disciples of Christ, we know that He is the source of our strength, our hope, our compassion. The good things that flow out of us – to our children, to our neighbors, even to our enemies – ultimately flow from him and through us.

We must remember, then, that much the same principle applies to us and our special needs child.

Until he is of age, until he is able to understand what Christ has to offer, and until he is able to make his own decisions, I am the root of my son. He is my branch, my fruit, my produce.

What I am, what I say, and what I do is what he is now; and likely what he will become as he moves through life and into adulthood.

How critical then, that in my striving through life I make sure I take the time and the care to strive to be focused on holy things and that I offer myself up as wholly submitted to God. We must teach our child that apart from the vine that is Christ, we can achieve nothing. Neither can he.

But when you pray, go into your room, close the door and pray to your Father, who is unseen. Then your Father, who sees what is done in secret, will reward you.

And when you pray, do not keep on babbling like pagans, for they think they will be heard because of their many words. Do not be like them, for your Father knows what you need before you ask him. Matthew 6:5-8

Prayer must become an integral and important part of our lives as the parents of disabled children. We have much to pray about on matters ranging from our own ability to cope to the physical and spiritual development, well-being and health of our kids.

The need to pray arrives before they do. It never leaves us.

What’s more, if we are honest, we know that there are days when the words simply won’t come. We find ourselves too infuriated or too grieved to pray. Our anger, our frustration, our weariness over the things we must do and the lives our children live, leave us unable to bend our knees, to submit our hearts, to open ourselves up before God Almighty.

Nevertheless, we must find a way to pray. Christ’s speaks to us of “when” we pray, not if. He expects it.We are given little choice, really. So, when we struggle with the "where do I turn?" thinking, we should start in Matthew, listening closely to what Jesus tells his intimates – and us – about how to pray.

We’re not to be like the hypocrites, mere actors they, posing for the crowds and those around them, spouting words that ring hollow the moment they leave their mouths. No, our call is to be genuine and honest, whether we come before God on a day that our wounds are raw or a day when a new joy has taken hold.

We’re to take up such matters “in secret.” It’s a private matter, this, not one to leave sitting on the table for every minute of the day. To be sure, there are parts of our struggles, there are pieces of our hope, there are matters of prayer which we will share with others.

But our primary mode of praying is to be in secret, in a still, secure place. We are talking here about a one-to-one conversation with the God of all creation. We should not enter into it lightly or give ourselves over to “babbling.” We must set aside distractions, the woes of the workaday world, and the laundry list of to-do items that shapes our day-to-day lives.

We must be intentional about what we will say, deliberate in how we say it, and precise in what we mean. What’s more, we must realize God is waiting for us. He knows “what you need” and so he waits for us to come, waits for us to seek his attention, waits for us to call out. We initiate the conversation.

We enter into such places, speaking in such manner, not to change God’s thinking on our child or on matters related to his or her health and life. Rather, the change that will take place comes within us. We invite the change by seizing prayer for what it is – opportunity, a chance to be alone with and intimate conversation with the God of all creation.

God, our Abba, our father, comes into that place and finds us, broken and bowed. We are often eized by the fears of what yet may come and often unable to remember, for longer than a moment, the blessings that have come to us as we make this walk.

God comes into such a space and we find not condemnation for our doubts and anger. We are not met with his wrath for our days away or for our unwillingness to totally submit. We do not find a judgment for the wretched pieces of us.

Instead, God comes into such space, whispers into our heart, and plants within us a hope that will not die and a connection that sustains us in this day and that we can, on another day, pass on to our child.

Our lives, our dreams, our behaviors will all be changed by the walk we make as the parents of a disabled child: We will give up some friends, acquire others. We will stop thinking bad things happen only to other people. We will find new stresses and new challenges in our marriages, our work lives, our faith lives.

One transformation we must make – no matter the status of our faith walk the day our child’s troubles arrive -- is that of letting Jesus change us. After he begins his work within us, we can never be the same.

“…they took note that these men had been with Jesus.”

People will be watching you for the rest of your life, in ways you might never imagine, given your status. You are the parent of a disabled child. Some will look upon you with pity. Some will look upon you with sympathy. Some will look upon you as an example of life’s unfair ways. Some will even whisper a silent prayer of thanks – grateful that your life is not theirs.

Virtually anyone who pays the slightest bit of attention will notice how you handle the challenges your child faces and those he brings into your life.

If we take this journey with a disabled child, we must take care to make Jesus our companion, too. And in that walk with Him and our child, we must let Him transform us. More than change one thing or another about us, Jesus Christ will transform our very nature.

Once we accept Him, we can never be the same and others cannot help but notice including the witnesses we call son, daughter, husband, wife, friend, foe.

They will know by what they see and hear you are being rebuilt, remanufactured, transformed in ways that extend far beyond those that can be attributed solely to your child’s challenges.

Whether they ask questions of you that make it clear they see the difference, or whether they simply observe in silence, with their thoughts gone unspoken, they will notice.

And you, by letting Christ have his way with your heart, your spirit, and your soul, will live as evidence of his transforming grace and power. They’ll be unable to avoid seeing it. So, too, the observer you call son or daughter.

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.

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.

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.

…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.

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.