Ain't No Yellow Brick Road

“The thief comes only to steal and kill and destroy…” John 10:10

Many are the thieves who come to us as we walk this path with our disabled child. They may not look like thieves. We may not see the threat they contain or the risk they carry within them. We may not realize they are what they are or that do what they do. They may not even realize it, themselves.

But make no mistake – those who don’t approach us or our child with love, with compassion, with understanding or perhaps, even, the smallest amount of tolerance are little more than thieves.

They come to steal our joy. They want nothing more than to kill the hope we have, despite the wheelchair, the crutches, the canes. They want to destroy the possibility we see, the dreams we still hold despite the blindness, the mental retardation, the uncooperative limbs.

We are a threat.

For when we find joy in a life that the world sees as curse, when we find a way to go on with grace and dignity and peace – despite the difficulties bestowed upon the child we love – we threaten the ways of the world-at-large.

Without perfection, the world wants us to believe, life is joyless. Without the perfect child, the academic all-star, the athletic wonder, we’re supposed to be downcast. We’re living a life less than complete, less than whole, in the eyes of the world.

The popular culture inundates us with the latest trends, the hottest of the hot ideas, the best of the best new things. A child with a disability never makes a single one of Top 10 Lists. Nobody dreams having a child with such challenges. Nobody sets out to walk a life of such demands. Nobody imagines a world where children are less than whole.

Yet, when we take in the love of Jesus Christ and learn to live it and share it, we can find blessings in what the world would see as curse. We can find peace in what the world sees as less, much less, than perfect. We can know grace and an abundant life on a terrain that seems to change beneath our feet without warning or reason.

And when we do such things, when we live life with joy and hope and refuse to surrender old dreams and start to dream new dreams, the world gets edgy. The world wants us downcast, heartbroken, and unwilling to see God in the path we must walk.

When we refuse to go along, the world will send anybody it can in the hope of stealing, breaking or killing such audacious things as hope in a life they see as lost, as possibility in a child they see as hopeless, light standing in face of what they can only imagine is darkness.

We must watch for such thieves as these and we must teach our child to recognize as them as well.

We who are strong ought to bear up with the failings of the weak and not to please ourselves. Romans 15:1

This life we live is not our own.

We think that is. We want it to be. We talk as if we live the life we choose, in the way that we please. Nothing could be further from the truth.

This life belongs to others.

For starters, our life belongs to our God. He created us. He made us. He chose us to live in the very circumstances in which we are living this day. He knew the choices we would make – both the good and the bad – that brought us to this point, this day, this time. He knows, even now, the good, the bad, the ugly of each and every one of us. Yet, he refuses to give up on any of us.

Our lives – yours and mine, his and hers – belong first to Almighty God.

Then, too, our life belongs to Christ. We hope in a real redemption, in salvation, in an eternal kingdom for just one reason – He died for us. Our sins, our suffering, our weaknesses, and oh so much more, he carried with him to the cross. The blood that flows from his wounds continues to wash us anew and provide us with hope of life everlasting. We have nothing of value to offer in return except that we surrender this life and this heart to him.

Our lives – yours and mine, his and hers – belong to Jesus Christ.

Beyond the Divine, outside the circle that connects God to Christ, our lives – yours and mine, his and hers – belong to our families, our friends, our neighbors, and even, hard as it is to believe, our foes. Those who oppose us, who shun us, who would do us some form of harm in a moment of cowardice – those who have broken our hearts -- own a portion of our lives.

Such thinking flies in the face of conventional wisdom. But it goes to the very heart of what Christ calls us to do.

He expects us to give up our very lives – and all that means – for the sake of others. He makes such a call to us and issues it without qualification, without condition. He leaves us no wiggle room, no ands, ifs, or buts when in John 15:13 we read: “Greater love has no one than this, that he lay down his life for his friends.”

And whom, we ask, does he expect us to call brother, neighbor, or friend?

Consider the parable of the Good Samaritan, as explained in Luke 10. Here, Christ recalls for us the DNA that links us to both the Garden of Eden and to every person who walks the face of this earth. With such parable, Christ teaches both the learned of his day and the rest of us some 2,000 years later, that we should look upon virtually everyone in need as a brother, a neighbor, a friend.

Such thinking is hard, I know. I am unable to sustain it, day in and day out.

Yet, in the same way that Christ took towel and wash basin in hand and washed the feet of his disciples –knowing one would betray him, one would deny him, one would doubt him and all would abandon him – so we must be willing to help, even kneel and serve, those who would hurt us.

So we kneel, giving up our claim to our own sense of what is just, and we surrender our lives to others.

Even as the demands upon us try our patience, shred our faith, and dismantle our life’s plan, we must make accommodation for the weaker among us. We must be vulnerable enough to let them see us at our worst and confident enough to let them see us at our most courageous. We must hold our tongue and refrain from the quick reaction. We must stow the sarcasm and the right to respond in like fashion to insult and injury.

What’s more, we must be the witness that testifies to a better way and a higher hope when they search for their own sense of God.

Many of us have found ourselves strong enough, tenacious enough, and determined enough to fight our way through the challenges of this life. We don’t do it alone; we have learned to lean on God in the tougher times: when the valley is dark, when the landscape ahead is empty desert, when the mountain is steep.

We know that God has provided for us. We have only to look to the left or the right and see the faces of friends. We have only to reach out our hands and feel another take hold. We have only to admit our own hurt, our own pain, our own inability to stand alone and find we are encircled by hardy spirits and gentle hearts willing to let us lean on them. Through them we are able to withstand more than we might think possible, enduring the slings and arrows of the day with uncommon grace and grit.

So our lives – yours and mine, his and hers – belong to others.

We are meant to be blessing: taken up, broken apart, scattered out into the lives of others. Not just others who are good or who love us but into the very lives of those with great need, who have wounded us, who have demanded of us unfair levy, who have forgotten how to love even themselves.

The hard part of this kind of living, of course, is that the world doesn’t care and rarely takes note. What’s more, to live such a life requires a willingness to have our spirits bruised, our reputations besmirched, our hearts broken. But there is a good – some might even say beauty -- in living such a life. When we manage to do it, even for a few seconds here or a minute there or even if we manage the courage and grace to live in such fashion for a day, we find our faith a little deeper, a little stronger, and a little more durable.

My eyes will be on the faithful in the land, that they may dwell with me…

Psalm 101:6

Once we start down this path of the parent with disabled child, we must make certain choices.

Each requires that we be careful, critical, and certain. This is especially true of the choices we make about role models and friends.

We learn, soon enough, that we are not alone. We are not the only parents in the world whose child faces difficult, challenging, and even calamitous times. But the friends we choose from this group, the people whom we mark as role models can make – or break – our ability to cope.

We must choose those who are faithful, who have conquered the challenges that embitter others, who have found the grace and the grit not to give up on God or their child. In learning about them and from them, we find ways to marshal that same grace and grit in our own lives, in our coping with the very circumstances that test our children and threaten to destroy us.

The wrong choices, of course, lead us to the wrong places. We learn to be bitter. We learn to be wounded. We learn to be less then generous. We walk around mad at the world, convinced we’ve been shortchanged and constantly longing to be relieved of this duty or always envious of the parent whose child seems typical.

Too long walking in such manner leads us to think of life as less than worth living. Even worse, we teach our child he is less than wonderful, less than special, less than what we dreamed when we first learned he was on his way. We teach him to live in diminished manner, as something far less than God intended him to be.

When we live in such diminished fashion, we become thieves. We steal from our child the gifts that matter to us all: hope, faith, dreams. We take those intangibles that so often help a heart to soar, a spirit to become resilient, a faith to become testament and we send our child out into the world ill-equipped to carve his niche from the rough and tumble he faces each day.

In essence, we send them out to a build a life but we fail to give them the very tools they will need. We fail to clothe them in the very garb that will protect them. We fail to help them cultivate the sense of self worth that would see them through their tough times.

It becomes imperative, then, for us to choose carefully and wisely when we make those choices about friends or when we select a role model for ourselves. We need to notice who has the scars that say: I fell down and then I got back up and resumed the race. We need to look for the eye that has not lost its twinkle, for the mouth that still wears a frequent grin, for the gait that seems steady, nimble, and yet, ready to dance.

We need to listen for the words that speak to a life of planning and preparation. We need to stand clear of those who wring their hands with worry and who seem consumed by what has been lost rather than what has been gained.

In particular, we should draw close to those who in word or deed or demeanor make it clear that the child they love is gift and that an unshakable faith is woven throughout the tapestry of their lives.

Sing to the Lord a new song for he has done marvelous things… Psalm 98:1

As our lives stretch out, we come to grips with whom and what we are. We come to know what we have become: the parent of a disabled child.

It’s not a title we seek. It’s not a choice we would have made. It’s not a place we wanted to spend our adult lives. But absolutely nothing will ever change the reality we face – no amount of tears, no amount of pleading with God, no amount of medical magic.

Often, we will look to the future with trepidation, sometimes dread. Often, we will see the path before us stretching out as a long, unchanging, unfulfilling line of tedium, sameness, and drudgery. Sometimes, we will think nothing about this child, about this life, about us is different today than it was yesterday or the day before that or the day before that.

Yet, we will change. Our tears will not fall forever, though we will weep yet again. Our prayers will not cease, but the nature of our petitions will evolve. We’ll still rely on doctors for help and care but we’ll give up the hope for a cure.

The change will come to us subtly, creeping in with almost stony silence. If we are not careful, the sameness that takes hold of us will blind us to it. We must remember to hope for it, pray for it, and look expectantly for its arrival.

And when we see it breaking through, coming for us, we must run to embrace it. For in the vey moment we admit such is possible we will begin to understand how profoundly – even magnificently -- living with our disabled child has changed us.

In such exploration, if we’re willing to open our hearts, if we’re willing to take in what our eyes see, if we make life about possibility instead of probability, the truly unexpected will occur: we will find ourselves able, willing, and even anxious to sing to God a new song.

The music will be unlike any you have heard. The words will sound unlike any you have previously spoken. The darkness that so often threatens to engulf you will give way to indescribable light.

The genesis of such song will be the deep connection that ties us and our child to God and all of his creation. It’s hard to imagine such a time, such a song, such a joy. It may even come to us in fits and starts: as little snatches of harmonic light playing across our psyche; as bits and pieces of words and music rippling across our spirits; as a barely noticeable stirring in way down deep places of our broken hearts.

It will come in its own time and only after our days stretch out, our journey has grown long, and our walk along the path of a parent with a disabled child finds a kind of sure-footedness, a gait marked by grace, a demeanor infused with perseverance.

In that day, our new song will spring from us, in ways we don’t fully understand and ascend to Heaven where we know it will be met with a smile.

“…The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart.” 1 Samuel 16:7

What matters most to God cannot be found in the clothes we wear, the jewelry that adorns our bodies or the number of wrinkles that line our faces. The things with which the world often chooses to judge you and me mean nothing to God.

He cares about what he finds deep within each of us, tucked away inside our heart.

That’s where the real scrutiny takes place. That is where the real measure of a man or a woman can be taken. That’s the piece of us that God wants to see in action, the place he wants to leave his mark, the very spot on which he would stake his claim.

It’s the battlefield on which he must prevail. It’s the tablet on which he would write the hopes he has for each of us. It’s the crucible in which he wants to mix his grace and our grit in such fashion that we become indefatigable, unyielding, and tenacious.

He wants us to tirelessly pursue him, to be unyielding in our devotion to our child, and tenacious in living a life in which we strive to model Christ even as we work to help our child make his way in this world.

God knows all about the wheelchairs, the crutches, the canes. He sees, better than us, the trouble of the blind child, the other-world existence of the child with autism, the unworkable portions of the child with Down’s Syndrome.

For reasons we may never know, he has chosen for us an existence that sets apart from the parents of typically developing children. We are walking a path that sometimes intertwines with theirs, sometimes parallels it and sometimes diverges wildly.

The compass with which we must navigate this unusual, often unfriendly terrain is our heart. It is our only hope.

We devote ourselves to the needs of our child because compassion and love live within our heart. We refuse to yield in our advocacy for him or her because we have a heart unwilling to surrender. We do with as much dignity as we can because the grace of God lives within our hearts.

Forget the trophies, the entreaties, and the judgments of the world. Let God go to work where it matters most. Let him shape your heart to his liking, his plan, his will and see what happens.