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.