"We have discovered some significant abnormalities on the brain." The most frightful statement a doctor can say to a father about his daughter. As many of my readers will know, on Friday December 4th, 2009, my oldest daughter, Karis Elizabeth Almy, was diagnosed with Krabbe Disease, a rare but fatal genetic condition that causes breakdown of the nerves' protective myelin coating and leads to the significant deteoriation of motor skills. A child diagnosed with Infantile Krabbe develops asymptomatically for the first three to four months of life, but then begins to manifest signs of the disease: muscle tone, vomiting, feeding difficulties, irritability, and seizures. The expected lifespan for a child with this particular onset of Krabbe is two years. As you can imagine, Katie and I were devastated and in a state of disbelief when we heard the news. In the moment immediately following Karis' diagnosis, I knew that my belief in the sovereignty of God was going to be tested. It is times like these that we find out if the theology we preach is the theology we practice.
For the first few days after the revelation of our daughter's illness, Katie and I grieved to the point of nausea. After the initial despondency passed, my sadness changed to confusion and then to anger and then eventually to numbness. Throughout the ensuing months, I remained in that state of numbness and wrestled with finding the joy I once had in Christ and in my daughter. I hid from many opportunities to be a father to Karis for fear of the pain that it might bring. I was stuck in a dilemma. If I should spend more time with Karis, would that mean more memories for me to grieve later? However, if Karis' life was shortened, shouldn't I take every opportunity that I had to spend with her now? I was facing questions that no parent ever hopes to face. This month Karis will be 22 months old. Karis continues to battle with Krabbe every day of her life yet the Lord has sustained her health in ways that I did not expect. Since the day she was diagnosed, I have not perfectly trusted in the Lord in the midst of this suffering. Although I have never desired to ask WHY, there has been a desire to ask WHEN. Specifically, when will my daughter be whole? One thing I think we as Christians often forget is that even though God brings good out of illness, even illness of a child, illness itself is not good. This world is fallen and broken and creation yearns for renewal (cf. Romans 8:19). As children of the king, we do not need to escape our suffering through platitudes but we need to endure our suffering through promises. In view of this, I would like to share with you five promises that have encouraged me as I have been a father to a terminally ill child.1. TERMINAL ILLNESS IS TEMPORARY.
2 Corinthians 4:17 says, "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison." Of all the glorious promises packed into this verse, one promise that is often overlooked is found in the first half in the phrase "light momentary affliction." No matter how it seems, this pain is temporary. Growing up, there was a cross stitching of Ecclesiastes 3:1-8 in the downstairs bathroom in my house. I can remember reading that portion of Scripture countless times as a child. When I would be going through a difficult time, I can also remember finding comfort in the truth expressed in that passage as well as in my mother's oft-cited aphorism: "This is only a season." Sometimes in the middle of all the heartache that comes with a terminally ill child, it is easy to forget that this pain is temporary. No believer suffers forever. There is coming a time when this too will pass. 2. TERMINAL ILLNESS IS NOT RANDOM.
Undergirding my ability to withstand the severe suffering that comes from knowing my child has a fatal disease is a staunch belief in the sovereignty of God. Nothing less than a robust Calvinism gives me comfort that this disease is not the product of "a genetic mistake" but is designed by God himself. Ephesians 1:11 tells us that God "works all things to the counsel of his will." Additionally, Romans 8:28 reassures believers that "for those who love God all things work together for good, for those who are called according to his purpose." Nothing that comes to us in this life is unplanned. Realizing that God has determined my daughter's Krabbe disease before she even existed encourages me because I know that this sickness has not appeared in her without purpose. Since it is God who willed it, the purpose must be good. I honestly do not know how any parent could cope with having a sick child without such a lofty view of the sovereignty of God.3. TERMINAL ILLNESS IS FOR THE GLORY OF GOD.
Without minimizing the intense sorrow that comes from being a father to a terminally ill daughter, I want to insist that it is the glory of God that reminds me that my sorrow is not in vain. Before Jesus arrived in Bethany four days after Lazarus' death, he said, "This illness does not lead to death. It is for the glory of God, so that the Son of God may be glorified through it" (John 11:4). Astonishing words from Jesus especially considering that we are familiar with how Lazarus' illness does lead to his death. The story gets even more confusing when we learn that Jesus himself purposefully plans not to go to Lazarus before he dies by delaying his arrival for two days (v.6). Is this some kind of colossal oversight on the part of Jesus? Why would he not run to Bethany upon notice that his friend is near death? We do not have to wait long for the answer for Jesus tells his disciples in verses 14 and 15: "Lazarus has died and for your sake I am glad that I was not there, so that you may believe." From the rest of the narrative, we read of Jesus' miraculous resurrection of Lazarus from the dead. Often, terminally ill parents wonder why Jesus won't do the same for their child. However, this misses the main point of the passage. The apex of this account does not come in verses 38-44 with Lazarus' mesmerizing resuscitation as he comes stumbling from the tomb (for Lazarus would be raised from the dead only to get sick and die again at a later time), but earlier with Jesus' declaration in verse 25, "I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live." Thus, God is glorified in terminal illness in that he causes us to trust more in his Son who is the resurrection and the life than in any form of temporary healing. Even if Christ is to heal Karis in the here and now, that healing will be short-lived because the morality rate for us all is still 100 percent. She will still eventually suffer from some other sickness that will take her life. Terminal illnesses do not shorten life (God determines the number of our days) but simply remind us of the shortness of life and remove the illusion of safety that comes from good health. Further, God is glorified when we turn from our earthly securities and find our security in him.4. TERMINAL ILLNESS IS NOT UNIQUE.
It is so easy for the parents of a child with a rare disorder to begin to think that their situation is unique. Especially with a disease like Krabbe that effects only 1 in 100,000 children, it is tempting to thinking that we are alone in this suffering. Even given such statistics, Katie and I have still met other families throughout the U.S. and Canada that have children with Infantile Krabbe. Even more so though, there is a profound sense in which no terminal illness is unique. In a sense, we are all terminally ill (cf. Romans 6:23). The wages of sin is death. The common lot of the children of Adam has been a terminal one. Having this perspective, we can see that our situation is really not that different from a child with a terminal illness. We are born dying. Each of us is racked with a fatal disease called sin and our only hope of rescue is in the grace of Christ. Krabbe disease and the helplessness and desperation it brings is but one picture of this reality.5. TERMINAL ILLNESS IS NOT TERMINAL.
Because Christ has died and risen again, the doctor's diagnosis is not the final word. 1 Corinthians 15:54b tells us that "death is swallowed up in victory." Even if terminal illness proves to be terminal in this life, we know that the grave is not a period mark and this life is not the last chapter. Jesus Christ has bled and died for our sins and those who trust in him for eternal life will not be disappointed. This hope is not restricted to believers only, but also to their children, even children who cannot express faith (cf. Acts 2:39). The covenantal promise that God extends to the children of believers is not an expression of sentimentalism but an objective truth contained in God's Word (cf. Matthew 19:14; Acts 2:39; 1 Corinthians 7:14). The status of the children of believers as members of God's covenant is firmly cemented in the Bible and is where Katie and I take our hope.