Cain’t Leaves His Mark
“Cain said to the Lord, ‘My [affliction] is more than I can bear’.” (Genesis 4:13, NIV)
The story of our oldest son Joshua, a life that was marked by what he could not or “Cain’t” do.
There comes a time in everyone’s life when only pictures and memories remain. Such is the case with our oldest son Joshua, who died in 1993 when he was only nine. Some images remain clear and some have faded. But memories, and the feelings and emotions that accompany the memories, are all we have left until we are reunited. And those memories tell an amazing story of God’s power and grace.
If Joshua’s life were to be measured by this world’s standards of success and values, his life would have to be scored as a miserable failure. He was the kind of son every expectant parent prays that they will not have. Everyone hopes and prays for a healthy, whole and normal child. A child to watch grow up, mature and “do better” in life than they have. Joshua was none of these things. But in a sense he was much, much more. For “God chose the foolish things of this world to shame the wise; God chose the weak things of this world to shame the strong. He chose the lowly things of this world and the despised things – and the things that are not – to nullify the things that are….” Was Josh’s life foolish, weak, lowly, and despised? Perhaps it was from the vantage point of this world. But it was not from the vantage point of God (or us).
His life was full of challenge from the very beginning. Eileen went through a very difficult pregnancy – diabetes that was out of control, pneumonia, phlebitis, toxemia and gestational kidney failure. She spent the last three months of the pregnancy in the hospital. The stay would have been even longer. Indeed, it needed to be longer. But all of Eileen’s health problems were putting our unborn child under too much stress. Although under normal circumstances it was still too early for Josh to be born – seven weeks too early – the doctors felt that his chances of survival (and Eileen’s) were better if he was delivered, than if the pregnancy was left to continue on course.
He weighed a mere three and a half pounds when he was born. While this is plenty large by today’s standards for survivability, he was pretty small by 1983 medical standards. His lungs had not yet fully matured, so he was on a respirator. He developed a very serious intestinal disorder that was fairly common for pre-mature babies, which nearly killed him before we could even bring him home. He spent his first three months in the hospital, mostly in a newborn neonatal intensive care unit (NICU). All of these problems contributed to cause the severe brain damage that we later (the weekend we finally were allowed to bring him home) learned Josh had suffered. The official diagnosis was cerebral palsy. In addition, the brain damage left him susceptible to frequent seizures that various medicines were never able to fully control.
As a result of all this Josh never learned to walk or crawl. He never learned to talk, read or write. He was diagnosed as cortically blind (his eyes could “see” but signals were not always interpreted by the brain). He could not sit up by himself and needed support when we sat him up. He was never toilet trained, as he had no control over his bladder or his bowels. He could not feed himself, or even learn to take enough food orally to be well nourished. Initially he was fed through a tube that we had to insert down his nose and into his stomach. Eventually surgery was required to allow feeding him directly into his stomach. For the last four years of his life he breathed through a tube (trachea) in his neck. This became necessary due to near fatal case of pneumonia (the doctors gave him less than a ten percent chance of recovery) that left his respiratory system too weak and damaged to function adequately.
His was not a very encouraging picture – in fragile health and totally dependent upon others his entire life. Certainly not the images that go through an expectant parent’s mind when they first learn that they are going to be parents. And despite the fact that he lived to be nine and a half years old, developmentally he was (both in his mental abilities and in his physical capabilities) really only a few months old. I suppose that if the doctors could have predicted or foreseen what Josh’s birth and life would be like, they might have suggested that we terminate the pregnancy. It would have been an expedient solution. It would also have been an acceptable solution in today’s world, where merely inconvenient pregnancies are casually aborted. Few would have blamed or condemned us. Besides, how could he be worth all of the pain and trouble that he would bring? It is true that Joshua required a tremendous amount of time, care and attention. But he was never a trouble or a burden. In fact we had many reasons to value Joshua’s life.
He taught us many things that the most knowledgeable or skilled teacher could never have taught us. The boy who could not learn for himself, in many ways became our teacher. Lacking physical strength to even as much as sit up, he taught us about inner strength. A living illustration of how God’s strength is made perfect in our weakness. He taught us about courage. Courage in the face of foes he would never overcome. Courage in the face of odds many of us, if we are fortunate, will never face. But like his namesake in the Old Testament, Joshua was “strong and courageous.” He taught us about unconditional love. We gave and gave and gave the best we could for Joshua, never regretting a minute of it, because we loved him so much. Yet most of the time the only evidence of love we received in return was a smile when we said his name. Even so, he taught us that true love, unconditional love, is not dependent upon what we receive in return for the love that we give. True love, unconditional love is satisfied simply by giving love. He taught us that we could still be proud of him even though he would never bring home a report card with A’s or B’s, or hit a home run or do any of the things one usually associates with pride of accomplishment. And finally, he taught us (or rather reminded us) that if all we live for is life’s rewards, which are temporary, then we are the ones who are truly handicapped.
No, using the world’s standards to judge Joshua’s worth is simply inadequate. His life was a very valuable one, having more of an impact in his short nine plus years than many have in a much longer lifetime. We know he is in heaven today, having never learned to know wrong much less having ever done wrong. Yet we know that if Jesus had to die for Josh, if Josh was the only one he ever had to die for, He still would have considered Josh’s life valuable enough to die for.
In Joshua’s life we also witnessed the miraculous. The odds were against him ever being born, but he was. He nearly died after birth, sick enough that he should have died, but he did not. At five years old a serious bout of pneumonia again nearly claimed his life. Given less than a ten percent chance of living through the night and developing sepsis and toxic shock syndrome, his recovery amazed his doctors. His sickness was so severe and unique that the doctors reported it to the Center for disease control in Atlanta. Another time he recovered from a severe sodium imbalance. The doctors later told us that they had never had a patient recover from such a low sodium level. That is until Josh. These battles were more than medical curiosities. They were more than a tribute to the always excellent medical services that Josh received over the years from the many talented and dedicated doctors, nurses and therapists that cared for his needs. They were an undeniable testimony to the awesome power of the Great Physician, the Creator and Sustainer of life. He still answers prayers with the miraculous. His arm has not “grown” too short that He cannot, even today, deliver from insurmountable odds.
But there were many instances where God, in His infinite and mysterious wisdom chose not to deliver. These were the instances where His grace had to be sufficient for us. We prayed for a “normal baby,” but we did not get one. We prayed for him to develop, but he never did. We saw him endure numerous surgeries. A feeding tube into the stomach because he could not learn to eat orally. A surgery that literally wrapped his stomach around his esophagus to prevent him from uncontrollably vomiting the food that he was fed. Spinal fusion to stop the progressive curving of a malformed spine. A breathing tube through his neck to give him an unobstructed airway because his bout with pneumonia left his respiratory system too damaged to function satisfactorily. These surgeries were not cures. They merely made the problems easier to deal with. Yet throughout all of this Joshua continued to smile and laugh. We could never know how much he ever understood, but he always came through the other side with a smile. And with each adversity the bond of love between our family and Josh grew. We could never have wanted these adversities, of course, but with each one our love, compassion and admiration for Josh grew. And as it grew somehow we grew too. We grew in ways that cannot be easily defined or measured.
It was at the end of Joshua’s life that the sufficiency of God’s grace was most important. It was sufficient for Eileen as she held Josh in her arms as he took his last breath. These were the same arms that a mere nine and a half years earlier had held him for the very first time as he drew some of his first difficult breaths. All mothers experience the miracle of giving life to their child. Few mothers, by comparison, experience the sufficiency of God’s grace as He asks for that child back. It was sufficient for me, as I held his hand trying so desperately to hold onto his life, helpless to stop it from slipping away. One moment I would gaze at his face, so peaceful and calm. The next moment I would gaze at the monitors that recorded his heart rate, respiration and blood pressure. Watching them get slower and slower, until finally they were no more and he was gone. It was sufficient for Josh’s brother Joel, who later that day came rushing home so excited to show us the get well card he made for his brother at school. It was sufficient when we had to tell an eight year old that his brother was not going to get well. That, in fact, Josh had died earlier that day. At the time I suppose we thought that God’s grace was barely sufficient. Our hearts ached so much. But we knew that God’s heart felt our ache. For we knew that He also had a Son that died and knew firsthand what we were going through. And if that were the end of the story, that’s all that would remain of our memories of Josh – heartache.
But, we know that the story of Christ did not end on the cross. The real story, what gives us hope is the empty tomb. Because of the empty tomb we also know that Josh’s story did not end with a flat line on a heart monitor. As surely as Christ rose victorious over death, we know that we will once again see Josh. He will no longer be the prisoner of a broken mind and a broken body, but whole. At long last the answer to the prayer we prayed “once upon a time” — dear God give us child that is whole. Now he is whole and “lives happily ever after”.
Like Eileen, Joshua’s experiences tell not only about God’s miraculous power, but also that God’s “grace is sufficient, He is strong in our weakness.” And, having gone through these experiences with Joshua, what happened to us because of them became much too valuable to turn our backs on. In fact, if God somehow came to us offering to turn back the clock. If He offered to give us a “normal” child in place of Joshua, but as part of the deal to erase all memory of Joshua – we could not accept. We could never give up the experiences we had with Josh, painful as they often were. We could never give up the lessons we learned and the love we shared. His life was indeed very, very valuable and worthwhile.