When Sammy was diagnosed I felt as if I had been kicked in the guts. Then, 7 years later, we were told that little Max had Cerebral Palsy too, and I hung my head. After Charlie was born on Valentine’s Day, 1998, showing all the signs of Down Syndrome, well, I just started to cry. We all cried. My wife Jeanne, and our 11 year old daughter Maggie, my mother who was baby-sitting, Pastor Tom and his wife; we all cried.
Our sadness has, in part, to do with the loss of dreams. Mommy’s boys won’t be getting high-fives and athletic achievement awards, and dad’s little guys won’t be paratroopers or jazz drummers. And, as nurses in clinical practice, we know what life can be like for the handicapped, and we have a rough idea of what their futures look like. It hurts to think of just how difficult the ordinary things will be for them.
When Sam was about 7 years old, I found him sitting on the floor next to the living room window crying. He had been watching Maggie play basketball. I walked over, knelt down next to him, and asked, “What’s wrong, Sam?” His eyes were looking at the floor. He said, “How come my legs don’t work?” Picking him up, I carried him to the couch and held my arms around him as he sat on my lap for the longest time. Both of us cried, we said nothing. We just stared off into space.
Max, at 4, is too young to know, and Charlie may never know why it is so hard to do the normal things, like walking, and talking. But, mommy and daddy do. They know very well, and they have an ache deep in their hearts that will not quietly go away……. At least, not in this world.
Jesus calls His followers out of this world, and sets before us a path to follow. You remember His teachings. We are to, “Seek first the Kingdom…….” Scrapping our flight plan and following Him has not come easily. Leaving the shelters of conventional comfort zones such as schools, churches, and even our families, have been trials often filled with great anguish and uncertainty.
We used to take advantage of government assistance through the public school system. The public schools are the conduit through which disabled children obtain critical and necessary services, including physical therapies, speech/language, occupational, nutritional, and behavioral therapies, from State contracted vendors and providers. Tax revenues were dedicated to pay for our diapers, our co-pays for wheel-chairs, leg braces, and diagnostic and surgical procedures, as well as our respite care and our child’s portion of our monthly health insurance premium.
Over the years our philosophical view has changed. We no longer believe we should petition the government to provide for our family’s needs. Our decision has narrowed our economic and social options considerably. We still go through a lot of diapers, which never seem to go on sale. And, out here in the country, finding a baby-sitter is nearly impossible.
Maggie and Sam went to public schools for a few years, and Maggie attended a Christian school for some time as well. But, early on we realized the safest and best education for our children would take place in our home, and for nearly 20 years now, we have walked that path of “raising up your children…….” It is a labor of love that I see in my wife as she devotes herself to teaching and preparing our children. Our efforts and commitment to them is also an unspoken source of some contention among others, including family members, many of whom are professional educators.
We used to be satisfied with what we saw and heard in the church. We were tuned in to the cultural gospel of “Do This, Do That,” and “Get This Get That.” Rarely did we hear, nor did we appreciate, what Jesus anticipated for His followers. Today, the ideas of brokenness, suffering, and bearing the reproach for the gospel are not held in high esteem. They are neither seeker-friendly sermon topics, or what people have been taught to expect. However, the experience of the vast majority of those in the early church was exactly that; persecution, deprivation, estrangement, and even death by no less than the prevailing ecclesiastical powers. What horrors these brothers and sisters in Christ knew as their common experience for the sake of the Gospel!
Having left the tradition of the weekly sacrifice, our trials cut to the heart with our families. We’ve tried to be Bereans, searching out the scriptures, seeking to know what is true. And, we’ve come to know some of the implications of what Jesus meant in Luke 12:51-53; “I have not come to bring peace but division…father against son…mother against daughter.” A great theological divide separates us from those we love dearly. To borrow from John Bunyan, when he describes his prison experience of being estranged from his family, it is “like the tearing of flesh from the bone.”
The Apostle Paul, in Romans 8, tells us that the “sufferings of this present age are not to be compared to the glory that will be revealed in us.” All suffering, in the believer, is used by the Lord to refine his creation, conforming them to His image. Whether suffering the reproach of the gospel in living out your spiritual life in Christ, or enduring heartache for those you love, all is done to the glory of God. And, it is His glory that He promises to share with us in the age to come. It is a glory that cannot abide pain and suffering, tears or sadness, or any infirmity, including Cerebral Palsy and Down Syndrome. The promises of God are sure, our hope is certain.
It is the matter of God’s grace that keeps us, amazing me daily, as I consider the mercies and gifts He has lavished on my family and I. Through His sacrifice on the cross, Christ has vanquished my sins. He has set His seal on my heart, and He has been faithful. In our sadness and our children’s pain He has spoken to us words of hope. We have learned something about being broken vessels and being made strong in our weaknesses.
As we move through this world with our sights set on the things above, we “see through a glass darkly.” But, sometimes, even in the stone silent quiet of many lonely and uncertain nights, we can get a glimpse of what is to come. Charlie will no longer be afraid and he will sing clearly, “Praise the Lord.” Max will never again fall and hurt his head. Sammy will enjoy his new legs, thinking back on all those tears, now and forever wiped away. And, Maggie……. She will finally see the face of God, run to Jesus and kiss the face of her Father.
Set free from the bonds of time to live forever in the glory of His presence we will speak of His goodness and mercies. And, as we come to understand the meaning and beauty of the trials he set before us we will be forever grateful and thank Him for these matters of grace.
Thursday, November 08, 2012
Passion has always obscured and confused the notion of truth, as in your feelings trumping what you “know.” Today, we’ve gone one step further in allowing passion or strong feelings, to define the truth. And, this is not relegated to primitive religions or the long corrupted social science of liberalism. The doors to the evangelical church have been flung wide open and into its pews have come to roost those who feel and cannot think.
My wife picks out my ties, and this Sunday morning a snappy coffee and burnt sienna colored selection led my neck and head through the crowd and into the storefront church, a one-story concrete block structure that might look to passersby like a non-descript Wal-Mart. My boys were in tow and they were excited. We’d been told the congregation was young, energetic, and friendly. The image in my mind was inviting and I was looking forward to worshipping the Lord that Sunday morning in an affluent suburb of Minneapolis.
An attractive, smiling, 30’s something, woman welcomed us as we came through the door. The buzz of people on the move followed us as we snaked out way through a maze of chattering, smiling, and excited 20-40 year-olds, and even split of singles and families. They were dressed casually, many clutching a ration of coffee in cups from the church’s cafe lounge I saw at the end of the long hall. It was summer and nobody I saw was wearing cut-offs or shorts, but I didn’t see any women wearing dresses, either. It quickly became apparent and awkward to me that I was one of the few men, if any, wearing a tie.
As we entered the sanctuary, I was reminded of my rock concert days back in the 1970’s. I had the distinct anticipation of the “show.” The layout was essentially studio/theatre design, with a large stage, flat-black draped curtains behind a massive cluster of overhead lighting. Sound booths and video production areas are standard in most churches these days. Evidently, if Jesus doesn’t heal your blindness or hearing problems, these churches will take those matters into their own hands.
Our boys, Sam and Max, have gait problems because of their disabilities. Max fell and fractured his skull almost a year ago, so whenever I am walking with him these days, I hold his hand to keep him steady. Even without that detail, it would seem evident that our boys may need a little help ambulating, simply because of the loosey, goosey way they walk. So, we tried to find some safe seats, easy to get to. But, people usually like the aisle seats, so we had a bit of a stumble past a latte sipping couple, before we found our place and sat down.
A huge video screen began to descend overhead the stage, and the camera was trained on the drummer doing a sound check in a plexi-glass sound enclosure. As a drummer myself, I was interested in his technique before I caught myself; “Dude, you’re in church to worship God Almighty, not sticking patterns or the sounds of some guy’s drum set.” For the next hour and a half it was difficult to distract myself from a sometimes overwhelming sensory experience, and focus on what the preacher had to say. I wondered,” What’s going on? I’m here to worship and, in order to do that, I have to distract myself from what’s actually happening, which is supposed to be worship. Huh?”
Music has always been a strong and ordained help in worship and ministry. As such, its proper place is subordinate to the message. All is used to glorify God and in worshipping Him and serving others. I’ve played drum parts to solemn classical pieces in very affluent stained glass churches, and I’ve played power-soul-music in poor inner-city churches where we burned the place down with shouts of “Amen, brother!” So, I’m not “fundamentalistically” exclusive. If God owns the cattle on a thousand hills, He also owns every note on the musical scales as well as all the time signatures and rhythm patterns of the universe.
While ministers and ministry must be oriented to the spiritual and practical (in that order) needs of others, and style can enjoy a certain freedom in expression, worship is always to be done in the manner prescribed by God himself. But, these days, music and the show frequently bleed over into the sacred and makes subordinate the message of the words of God. That was my problem with the Woodman.
He reminded me immediately of Woody Woodpecker, a cartoon character that first appeared in a movie in 1940 and on television in 1957. Described as “outlandish” and “an insane bird” his visual trademark was a great tuft of bright red hair and a staccato manic-like laugh.
He was the young staff pastor that came on stage to make the obligatory announcements from the church bulletin after the crowd had settled back into their seats. His presence on the big video screen made a part of me want to laugh, another part sad, and another part almost embarrassed. He wore a yellow bow-tie and white shirt that hung over his belt. If you go to the Caribbean, the locals don’t tuck their shirts into their pants, shorts, or whatever. It’s de style, mon. But, the Woodman wasn’t in Barbados or the Virgin Islands, even though it was summer in Minnesota. I am a forgiving man and could have overlooked his fashion faux pax. But, the young man pastor’s hair is what finally did me in, and I went off whatever reservation I had at the church’s table of teachable moments. His hair was red and jelled, combed straight up all around his head. And, it just stayed that way. It didn’t finally stop, fall over into its natural and preferred position on his skull, saying, “Whew, I just couldn’t keep standing up there! I gotta lay down for a while and take a break!”
I thought of rasing my hand and saying, “Check, please,” when I recalled that I was with my boys in church to worship God Almighty. It seemed we were surrounded by people who had come to be entertained, jump up and down, pump their fists, point their fingers, and shout their apparent approval of doctrinal assertions presented in musical verse, preferably up-tempo and with a strong back-beat. It was a powerful setting, like a carnival or the maniacal mood for Diana at Ephesus. I wondered if I would hear, “Great is the Woodman of Our Church!”
I couldn’t get some thoughts out of my head; the latte sipping couple skin grafted to their seats on the aisle (bless their beefy buttocks), the near frenzied, undulating waves of 20-30 something’s in the rows in front of us with their hands raised high and pointing to the singers, the sound and lights mix, the cameramen, the sound booth, and then the Woodman, with his stick-up hair and yellow bow-tie. And, this was all before the senior pastor came up on stage to preach the word. Whatever “word” he had from the Lord, I can’t recall. Neither can my boys. But, they liked the music and want to go back, of course.
Later that night, I thought about our visit to that church and recalled the only men I saw dressed with ties was the Woodman and myself. My wife said she thought she heard the family joiner in me saying, “Maybe that’s a conversational starting point… you know, the ties, something in common.” The joiner dude lost, though. The State Fair was coming to town in a few weeks. If you want to go to a carnival, go to carnival. If church, then let it be church, and please wear a tie.
PURPOSE AND PLAN; A.M.G.
Having reached the stage of our lives when it is necessary to actively prepare for our family’s well-being and needs after we are loosed from these mortal coils, we have determined to seek others who are willing to help in a ministry of compassion and benevolence to our special children. We are searching for Good Samaritans as the one described in the Gospel of Luke.
Our travels through the churches for the past 25 years have shown a curious lack of awareness of the needs of the disabled. We have known warm and sacrificial persons within congregations with whom we’ve worshipped. Strangely, however, this appears the exception. It seems a great worldliness of satisfaction has crept in “unawares” and obscured the insight of those charged by their Master with caring for the least among them. Church people have not been immunized from the beauty and success gospel preached by 21st century American culture, and their apparent indifference begs comment.
The American church has for many years been in a freefall of apostasy and the intent of “A Matter of Grace” (AMG) is not to criticize the state of the church per se. The abrogation of biblical doctrine is a matter for another page. But false teachings affect people’s beliefs and behaviors. And it is to those within the church, as it pertains to their lives as followers of Christ, that the need of my family is directed. AMG is an attempt to call out from the body of Christ a number of those whose hearts may be inclined to participating in the suffering of others- specifically three young men who will need their help in activities of daily living, decision-making and oversight of their needs.
Sam is 23 years old, Max is 15, and Charlie 14. They are our biological children. Maggie was born of my wife, and adopted into our family. She is 25 years old and is normal, or “typical” if you wish. Sam and Max share a permanent, pervasive, and congenital disability called cerebral palsy. This is a neurological disorder that affects the body’s movement, coordination, and balance. Persons with C.P. may also have cognitive deficits due to delayed acquisition of a variety of functional skills. Sam and Max use wheelchairs and at times need hands-on assistance for ambulation, transfers, and movements associated with the activities of daily living. Charlie has Down-Syndrome, and is significantly delayed in his acquisition of speech and language skills. Details concerning our children can be found on their individual pages on the website.
Charlie sustained a setback while attending Special Education classes at a local public school which has resulted in acute behavioral changes that demand 1:1 cares 24/7. All aspects of Charlie’s life have been negatively and seriously impacted. For this reason we brought Charlie home to educate and correct the dysfunction brought on by the aggressions he was subject to in his government school experience.
While we have home-educated all of our children, including our daughter Maggie, my wife and I were products of public schooling. Our extended family consists of educators. My wife’s father was a history teacher and several of her siblings are elementary and high school teachers. Her brother Dave taught hearing impaired students at Gaulidet University in Washington, D.C. We are not “head for the hills” radicals, although that may be the ultimate destination for many who know scripture and can see over the horizon. We have utilized services that include physical therapy, speech and language therapies, occupational interventions and social services. We have used the programs available to the public at the local high school and county Vocational/Technical school. However, the public school system, and the system of social services in which it is enmeshed, is contemptuous of the values and principles of a free society, such as once was ours. Statistics and a rational inquiry clearly show public education has in many ways become a breeding ground of dysfunction, alienation, and subversion. It certainly hurt our son Charlie.
Both my wife and I are nurses with careers beginning for myself in the late 1960’s. Her length of service will be redacted due to a self-imposed vanity exemption. We have had extensive experience in virtually every field of patient care including hospital, clinic, long term care, community nursing, corrections, military medicine, and pastoral ministry settings. Within those clinical environments we have cared for geriatric, adult, adolescent, and child populations, gaining competencies in emergency department, acute care, medicine and surgery, and other practice areas. Since 1998 I have focused my nursing practice in the arena of acute in-patient psychiatry; a.k.a. the “Heart of the Beast” from my philosophical perspective. Like the Johnny Cash song lyric, “I’ve Been Everywhere”, we know what it is like in whatever setting they might in the future find themselves. And we are not encouraged.
Incredibly, (if not for the established apostasy pervading the institutional church) it is conventional wisdom these days to see the needs of others through the lens of government assignment. Ironically the freedoms of American constitutional government has now morphed 180 degrees, establishing the benefactor (government) to gain controls over virtually every aspect of the most intimate and personal of relationships, the family. Thus, the worldview of liberalism has struck at the heart of the family relationship in exonerating its members of their responsibilities one to the other. The truth be told: The United States has become a society so impoverished in its collective soul that we’ve welcomed the nanny state. We enjoy our convenience culture. But the selfism permeating our culture is what we have as Christians labored to lose.
You can see this everywhere. We have seen it in the placement of a functional grandparent with adequate means in a nursing home. We have seen this in our practices with Advanced Directives such as “Do Not Resuscitate/Intubate” orders for persons whose manageable needs might be an encumbrance to the lifestyles of the person’s family. Recent mandates at the national level have placed bureaucrats in positions usurping family decision-making, with ominous implications.
My wife and I are determined not to allow this to control our boys. A state hospital or group home is not what we want for them, nor is it what God had in mind for them when he gave them to us. We have invested real prayer, real time, and real tears for them. We see this as a simple test of our commitment and love for them. It is what we would expect of the Lord who has called us. We have trained them up in the way they should go and will not forfeit those teachings to others who will intentionally or otherwise undermine our family values. We have labored, often under circumstances few might understand, to instill a biblical worldview and values in our children.
It is our mission plan to cultivate those scriptural values in their hearts and minds to serve them as foundational to how they should then live. Government and conventional wisdom is inadequate to this task and increasingly hostile to our purposes and plan for our children as followers of Jesus Christ.
The above assessment should not be misunderstood as a retreat to a rabid fundamentalism that embraces restrictions on style at the cost of content (as in certain music, dress, or versions of scripture). Nor do I find my peace and security in adherence to the dos and don’ts of much currently masquerading as biblical counsel. Personal comfort zones of understanding the rules for Christian living are often matters involving grace. The Lord knows our hearts beyond their depths. He knows we are dust.
The help we seek is concrete as well as spiritual. Our long term plan involves the acquisition and development of a setting of safety and provision for my children. They need a safe place to live. Our short term focus is to finalize the ideas and formalize the plans. This will involve prayer, clear thinking, and money. None of this can be done by ourselves. But we are determined to see this project through.
We need your help. Please come on board for this adventure and keep your eyes on the Lord. He’s gonna do some great things through all of us.
Sincerely, and with faith in Jesus Christ,