Ain't No Yellow Brick Road

…he learned obedience from what he suffered…Hebrews 5:8

 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.

Therefore, strengthen your feeble arms and weak knees. Hebrews 12:12

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.

“…if the root is holy, so are the branches.” Romans 11:16

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.

"And when you pray, do not be like the hypocrites, for they love to pray standing in the synagogues and on the street corners to be seen by men. I tell you the truth, they have received their reward in full.

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.

When they saw the courage of Peter and John, and realized that they were unschooled, ordinary men, they were astonished and they took note that these men had been with Jesus. Acts 4:13

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.