aintnoyellowbrickroad

Call to me and I will answer and show you great and wondrous things you do not know. Jeremiah 33:3

 McKinney, Texas

Our travels have brought us to Texas, to a wedding in which a cherished nephew and his great love have given themselves over to one another as husband and wife.

I continue to let the things I’ve seen here and felt here pulse through me. I do not quite know how to articulate all of it but I hope to soon, as I am convinced such events are critical to the life and health of a disabled child.

For now, however, I focus on a few small exchanges that stirred my heart and roused my emotions because they remind me of the unending blessing — the constant reminder of God’s love and help — that family has been for all the years of Bryson’s life.

Here in McKinney, we gathered as one in an old, reclaimed and restored cotton mill for the wedding of Seth and Jenna. We sat in folding white chairs, beneath a beautiful blue dome of sky and a warm sun and refreshed by a breeze that tugged at ties and ruffled hair and pulled at the hems of skirts.

We sat waiting for the bride and the groom, each of us lost in our own private reserves of thought and emotion. Ryan, the best man and brother to Seth had just escorted his grandmother down to the front row. As he walked out, he passed Bryson and reached out, took his hand and welcomed him to the proceedings. A few minutes later, as Seth, the groom, walked in, he passed Bryson, and, as he did, he reached out with his hand and patted him on the shoulder.

 They were both momentary, almost fleeting exchanges lost in the celebration and triumph of the wedding day. But each touch was oh so important in the life of Bryson — and would be for any other disabled child struggling to carve out his place in this world.

For in those exchanges, though no words were spoken, both Seth and Ryan spoke with their hearts. And Bryson’s heart heard the message: “Welcome. I see you are here. I am glad that you are.”

The ceremony, of course, was the reason for our gathering. We came to witness the birth of a new life and the launching of new dreams and the start of a new journey. Seth and Jenna were our focus and the heart and the reason for our gathering; we want them to know we love them and we care what happens on their journey.

But the exchanges Seth and Ryan shared with my son reminded me that through all these years of struggle and challenge and uncertainty, family has been the great sustaining blessing and gift that has shaped a large part of my faith and a large part of my son’s life.

All those years ago, when Bryson came crashing into the world way too early, I stretched out face down in the chapel of the medical center humbled, broken, and calling out to God for help. I can still smell the fabric of the carpet against my face; still hear the stillness of the room as I lay completely flat, face down, arms out, calling out to a God who promised to answer.

In my pleading, in my calling out, I told him this was too big, too hard, too complex for me and that only he could it handle. I begged him to send help and I reminded him that he had promised to do so.

And he did. He sent family.

They showed up the first day of Bryson’s life, grandparents and aunts praying through the night during Myra’s premature labor. Then, later, they were driving in groups of two or three or four, the 12 hours from the rolling hills of Tennessee to the medical center in Chapel Hill.

They were a parade, of sorts, marching into the halls of the hospital and into the hearts of Bryson and us. Some came then for a week or two. Some came just for a day, driving all those miles, just to see and be seen so that we might be reminded we were loved and we were not facing this task alone.

The procession, thankfully, has not ended. For over the years, they have each made an indelible, undisputable mark upon my son and me.

They have done it with large and amazing gifts and in small, simple ways, each as important as any other. I see it when I see Bryson having breakfast with his grandfather, the two of them together at the kitchen table, alone, during visits. I see it in the patience of his grandmother, replaying the same game, answering the same question, and telling the same bedtime stories not once but dozens of times.

Photo message books created by aunts and uncle and cousins have helped him through recovery from surgery and during long, challenging sessions of therapy in Poland. And even now, years later, I often find him in his playroom, leafing through those same books, taking in the image and the messages of love written on each page.

They have come unexpected and, in person: a beloved grandfather, uncle, and cousin traveling miles upon miles to care for him so that Myra and I could slip away for a few days of much-needed time alone. An aunt and uncle arranging travel plans to include a visit here. An aunt taking off work and giving all her time to him. Another aunt and uncle letting him use their phone until the batteries are dead in a kind of made up game all his own.

They have come in email, in phone calls, and by way of postman as cards, notes, and letters remembering birthdays, celebrating milestones, or simply conveying messages of love and hope for challenging times.

At family reunions he has been included, and celebrated. I have seen him sit at the table with cousins for family gatherings and watched them help him with his napkin or drink or carefully wipe food off his mouth. I have heard them answer his incessant questions with patience and treat him — despite his disability — just like one of the gang. On trips to the West Coast, to visit aunts and uncles and cousins he had never seen, he was immediately accepted into the circle, treated as one of the gang, and given the same treatment — good and bad — as each of the others.

Perhaps the most telling proof of his connection to all these people be they in Tennessee or Indiana or Kentucky or California is that he talks about them often. It’s not unusual for him to replay a visit or a memory of time with one of them and then say to me: “Dad, I miss those guys” or “Dad, I wish we were going over there.”

They are the intangible, the immeasurable, the hard to describe and yet, impossible to deny, part of his ability and his success. What they give and how much they mean to his achievements and his life don’t show up on charts or in books or in the medical history.

We have Dr. Alexander to deal with the issues brought on by Cerebral Palsy.  We have Dr. Ewend for brain and shunt issues. We have Dr. Muff for the day-to-day, year-to-year pediatric care and a handful of other doctors for every need. We have Ms. Leopardi and others for schooling. They are all, each of them, critical to his life and to his health.

But we count on family to supply the love and the essence of life that fuels our faith in God and in him. They are the hope and help and possibility written onto every page of Bryson’s life.

… as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness… Colossians 3:12

San Antonio, Texas

We are on the road and, as typically happens when I travel with Bryson, I am being taught new lessons and reminded of the old ones – especially those we are meant to cling to and to live out each day.

This city of diverse languages, cultures, and skin color, is awash in the sights and sounds created by families at play. Hundreds have gathered here to enjoy Spring Break: there are college kids, high school kids, families and more. There are grandparents and babies, newlyweds and young lovers, families and tour groups.

We have seen people in wheelchairs, people on crutches, and strollers by the dozens. People run, people sit, people work, people play. Most of them are gathered along the Riverwalk, a thriving, bustling, hum of color stretched along both banks of the narrow river as it winds through downtown. It is lined with restaurants and shops, hotels and office buildings.

The trees are budding with the green of spring growth. Yellow daffodils, purple pansies, and the green of soon-to-open iris line stretches of the walk or encircle a statue here, a sculpture there.

Below the busy, crowded streets and the steel-and-stone 19^th Century bridges, the businesses along the river have thrown open their doors; the chairs and tables spill out onto patios and terraces and long undulating stretches of asphalt and concrete. Restaurants are crowded with people laughing and eating and drinking. We walk between canyons of glass, steel and concrete. In many places, people look down from their offices or the hotel lobbies or the balconies of a pub, a grill or a bar.

The sun is warm and bright. The temperature approaches 80 and we are on the move, exploring unknown sights and taking in long stretches of river, sidewalk and the flow of humanity.

Bryson, of course, is in his wheelchair.  I am pushing and Myra is with us. We are trying to simply let ourselves become immersed in all that comes along, seeing what we might learn or find.

I can’t help but notice that Bryson singles out people for a friendly hello or quick question. He does this often when we travel, but I notice that no matter what or where or who we come across, he always makes a point to speak to those who appear to be living on the margins.

For here, along with the sounds of celebration and the spending of money and the gleeful expressions of people at play, we still see the poor, the forgotten, and the struggling. They are few and they are tucked away, just off the beaten path.

As we pass beneath one bridge, where the walk curves mightily and gives way to a crowded, narrow strip of restaurant terraces, a man sits tucked in the shade. He’s perched on the wall, eating M&Ms from a plastic CVS bag. Another CVS bag sits beside him.

He is young, unremarkable and ragged.  His mustache is ragged. His T-shirt is white and ragged. His jeans are worn and smudged and ragged. We are all passing him by.

Bryson sees him and speaks.

“What’s up, man? How are you?”

The man smiles – most of his teeth are gone, the remaining are stained brown — and raises his hand. “Good, thank you.”

A little later, further down the walk where the crowds have thinned and the offices are more numerous than the restaurants, a man sits on low wall of stone.

He is alone, older, perhaps in his late 50s. He is sweating, seated just along the line that separates warm afternoon sunlight from the shade of the building behind him. His shirt is stained with sweat. He wears a few days of stubble on his chin.

Immediately beside him sits a small, brown paper bag. The top of a sweating aluminum can peeks out of its top.

Bryson raises his hand in greeting as we walk by.  “Hey, what’s up?”

The guy smiles. “God Bless you son.”

“You, too,” Bryson responds and then we are beyond him.

But I am unable to shake these tiny, minute, exchanges from my mind. I have seen such before from my son.  Whenever we are out and about, whether at home or far afield, Bryson offers a hello or a wave or both to those we see living on the margins.

If a guy is panhandling on the roadside, he wants to stop and offer cash. If we see a guy sitting alone, in a corner, he heads for him. If we somebody looking especially sad or even tearful, Bryson wants to find out what is wrong, what can be done?

So far as I can tell, he does it without assessing or considering anything much more than the troubled countenance borne by the solitary soul before us. He does not weigh what they have or need against what we have on hand. He does not wonder if they have brought this upon themselves with poor choices or addictions. He does not wonder how much he will have left if we give some of what we have away.

He simply reaches out. His gifts are usually a smile, a kind word, a bright, enthusiastic greeting. He offers a handful of connection, community, even compassion. And, when I watch closely, I see one human with tough stuff to live through reaching out to another living with his own brand of tough stuff.

A heart at peace gives life to the body, but envy rots the bones. Proverbs 14:30

 One emotion that we confront frequently as our child struggles is envy. We look about us at children running, playing, talking, and walking. We see them whispering in small groups, laughing out loud, tossing a ball, or doing all manner of typical things.

And the minute we look and let those simple, whimsical, carefree actions sink in, envy arrives. We find ourselves envious of other parents and other children. We wish, for our own child’s sake, that he could run, he could jump, he could see, he could climb, he could toss the ball, he could simply be typical.

The movements, the play, the whimsy – it all seems so simple. We can’t help but wonder why our child must be denied those abilities, those joys. The devil pesters us into wishful thinking by sending envy into the cracks and crevices of our human condition.

What’s more, this envy visits us unexpectedly all the days of our child’s journey. It comes in the early days. It comes to us as months turn into years. It comes even as the journey stretches out and the years multiply.

 If we’re not careful, envy compels us to look past the blessing of our child, the special journey upon which he has taken us, and the unimagined, eye-opening sights we’ve witnessed. If we’re not careful, envy seizes us and contorts us and threatens to paralyze us with unanswerable questions and unbridled, insatiable desires tied to our child’s abilities.

Envy raises questions for which there is no earthly answer. It sets our imaginations ablaze. It recalls the grieving tied to our broken dreams and our shattered hopes.

It even rots our bones, God tells us. It becomes a cancer, one that threatens our faith and our frame.

We must resist it. If we find that it has taken root in our lives or in our way of thinking, we must evict it. The life of our child and the life of our faith absolutely depend on it. We can’t allow either to be diminished.

Instead, we must be strong of spirit and body, and willing to carry on, leading our child up this mountain, digging into the ground here, clinging to a rock there, moving ever upward. We must look at other children and see them for exactly what they are – children different from our own.

They’re to be loved, helped, enjoyed — but never envied.

Christ is calling us higher, urging us to realize that our child’s inability to be typical presents us a choice. We can choose to love him for exactly what he is and to realize if he were typical, he would not be the same child we know and love this day. Or, we can waste our time and our energy wishing he were someone different..

The real tragedy of the envy is that it gets in the way of contentment and we burn up our days overlooking the gift and the blessing that is our own special, unique child.

…But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on…Philippians 3:13-14

 Some days, the most difficult thing for us to do is throw back the covers of our bed, put our feet on the floor, and stand up. The challenges our children face, the indignities they sometimes suffer, the uncertainty of it all can put us in a mood for staying put.

 But like the apostle Paul, we must press on.

 We are walking a path upon which God himself has put us. The walk is as important — perhaps more important — than anything else we do. Our life with our disabled child is more about others than about us. We are part of something bigger, something more valuable, and something more eternal than us.

 Our child’s needs must rule our lives. His future, his dreams, his life depend on us and we must answer the call no matter how hard it can become. Some days, we feel as if we live in a box. We feel hemmed in. We feel shackled to his disability.

Still, we must press on.

 The needs of our friends, our neighbors, and our community come ahead of our own. This path we walk is one on which we are being watched. The people around us take note of our manner, our struggle, and the way in which we cope. The desire to wallow, to give up, to complain about the path we walk must not deter us.

 We must press on.

 The challenge of this life is multi-faceted. So, too, the value of how we choose to live it. We are being asked, encouraged, and called to live it with dignity and grace and a determination made not of us but of our faith in God. We must open ourselves up to his love and his help — his Spirit at work inside us — so that we might teach those around us how to open themselves up to his help with their own challenges.

 We could surrender. We could throw up our hands. We could take the kudos and applause of the world for some of the things we have already done and take a seat. But our child would suffer from such a static existence. So, too, our witness.

 We must press on.

 Rather than surrender, we must focus our faith and our hope on the cross. We must use it as marker, the dot on that far horizon toward which we walk. A call for us is not just to live, not just to be of faith, not just to hang in but determined to live life fully and abundantly.

 Our call, like that of St. Paul, is to press on. We are called to action. We are called to a life in which we don’t wait, a life in which we don’t wallow, a life in which we don’t wilt. We are called to lean forward, to focus on God and be certain of nothing more than this: that we must press on.

“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 growing 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 and the uncertainty of what may come 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 and 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 that 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.