When death casts its shadow over the brightness of life, it can shake you to the very foundations of your being. December 24, 2024 that shadow was cast over our home. After 26 years of life, our daughter Naya drew her last breath. Hers had been a difficult life. Only three days before she was placed on hospice care, genetic testing revealed she had a condition called Sanfilippo Syndrome. Her whole life she bore witness to the effects of sin through the deterioration of her body and mind. Physiologically she could not break down certain sugar molecules, which in turn accumulated in her body and gradually destroyed her central nervous system and brain function.
On July 2, 1998 my wife and I welcomed a precious daughter who became a vibrant, happy, and good-natured toddler who talked, laughed, joked, ran, played piano (a little), and wrote her name. By the time she turned four, though not knowing the name of her condition, we realized something was not right. By age 11 she began to have massive seizures. By age 14 her loss of skills was noticeable. By the time we laid her to rest she had long-since ceased to walk, talk, smile, feed herself, or interact with us in any noticeable way. In some sense, we said good-bye to Naya a little bit at a time. And yet at her death we realized just how unprepared we were for what was to come.
There was no doubt in our minds about God’s sovereign right to deal with us and our daughter according to His will and His ultimate goodness in all that He ordains. Because of our dependence on the truth of the gospel, there was no lack of hope. 1 Thessalonians 4:14 assured us with these words: “For since we believe that Jesus died and rose again, even so, through Jesus, God will bring with him those who have fallen asleep.” We were realistic about what the future held for Naya. She had suffered so much pain in the months before her passing and we were aware how death would free her from that hardship. We knew that for Naya to live is Christ and to die is gain (Philippians 1:21). As a pastor I have encouraged people to grieve as those who have hope (1 Thessalonians 4:13). And yet there was a definite weight and heaviness to the grief and it crashed over us with all the power of a tsunami wave.
I can testify to the saying that God refines us in the crucible of suffering. Not any one person could describe all the different forms that suffering may take, neither is that my intention here. However, I hope to give some of the lessons, which are still very fresh, that I have learned by facing death for the sake of comforting or preparing others who will certainly face the same trial.
Positive Lessons Learned
Not all the lessons learned through grief are corrective. God in His grace gave many instances where we were able to see, even in the moment, the good that He was doing through this painful circumstance. In Naya’s case, there was about a six week span were we slowly began to realize that the end was near for her. And in these six weeks we saw the Lord do wonderful things.
Dependence on God
There is no man who is not dependent on God for his life and breath. But suffering and hardship make that reality more apparent by increasing the awareness of the need of God. This need is often expressed through an increased desire for and practice of personal and family prayer. In our suffering we were more eager to go to Him in prayer in which we were encouraged by a constant awareness of the promises of God. Our powerlessness in the moment made us look to our Heavenly Father for strength and mercy. It is easy to become complacent in prayer, forget God’s promises, think there is always a human solution to any problem, or to divert your trust to doctors and nurses. Yet God alone governs, and the Christian should look to Him. Suffering reminded me of that truth.
Care from His People
God uses His people to care for His suffering children. A healthy Christian will spend more time ministering that receiving ministry. And it can make them slow to receive help. But the body of Christ, both local and extended, cared for us in our season of grief. They did so through expressions of sympathy, kind notes and cards, a mountain of casseroles that even our crew had trouble eating ourselves out of, and by being physically present at the funeral. To receive the ministry of the Lord’s people is a tremendous blessing.
Hope for the Future
People often live as if life will not always conclude with death. However, death is the inevitable consequence of sin. Naya’s short life bore out the fragility of what 2 Corinthians 5:1 calls “the tent that is our earthly home.” Modern medicine has made it possible to prolong life, and that can be a tremendous blessing. But there will be a moment when we all say good-bye to our earthly tent. It is impossible to hold on to this life forever. All must face the reality of the life to come. And the promises of the Bible remind the Christian that instead of agony over the end of life, there should be a hopeful expectation of eternal life for those who belong to Christ. The anticipation of that hope makes enduring death different for the Christian.
Painful Experiences Lived
And for all the wonderful lessons Christians learn through grief and pain, they are still…grief and pain. The Bible does not minimize sorrow in the face of death. Jesus Himself weeps at Lazarus’ tomb (John 11:35). Christians are exhorted not to “grieve as others do who have no hope” (1 Thessalonians 4:13), but that does not mean we are to deny grief and the pain of death altogether. Below are some of the more painful parts of death and dying.
The Shock of Death
However much end-of-life issues are discussed, I do not think anyone is actually prepared for the finality of it. My wife and I knew we would likely be the ones to release Naya into the Lord’s hands. And yet once the decision to put her on hospice care was made the finality of the decision pressed in on us. It set in motion a process where we were hurtling toward an inevitable conclusion. And even as you wait for death to come, nothing prepares you for that moment your loved ones takes that last breath. There is an agony that washes over you. It is a front-row seat into the awfulness of death. That pain and sorrow is incomparable to any other loss in this life.
Failures of the Past
Facing and experiencing the death of a loved-one also brings to mind failures in how you loved them. Moments of impatience otherwise long buried are resurrected in the mind with a vividness that makes it seem they were committed yesterday. Past failures to love as Christ loves His people become abundantly clear. And at times these remembrances can send shivers up your spine. All the excuses which might otherwise satisfy become obviously inadequate.
Sorrow over a Missing Companion
Death robs the living of the presence of those who have “fallen asleep.” This reality sinks in the days immediately following death as family routines are forever changed. In our case, the first mornings after Naya’s death we woke up prepared to bathe, feed, and care for her as we had for years before. And just as soon as the thought entered our minds we immediately were faced with the fact that we did not have that responsibility for her anymore. Places like empty bedrooms or favorite chairs can become monuments to a new and permanent absence.
These painful experiences, however sharp, are also used by the Lord to direct man to Himself. Though the Christian may feel great weakness in the moment, he should be comforted by the resurrection of Christ.
“‘Death is swallowed up in victory.’
‘O death, where is your victory?
O death, where is your sting?’”
(1 Corinthians 15:54b-55)
Comfort and tears can live side-by-side. The tears do not indicate a lack of trust in the Lord, but show a proper agony over the effects of sin and provide a proper framework for longing for heaven.
Next installment will look at how the intensity of grief over death can tempt us to stumble in certain ways.