This is my response to an editorial appearing in Slate magazine's DoubleX section. You can read the editorial
here.
Dear Emily,
First and foremost, I would like to express the deep sorrow I felt for you after reading your essay. My heart breaks for the suffering you and your child are experiencing. I cannot begin to comprehend the inexpressible grief you must be feeling. To watch your child suffer in such a terrible way is truly horrific. You have my deepest sympathies. I know that your current circumstance may appear hopeless. You know your son is going to die, and you can't stop it. You don't know when, but you do know that it will be excruciatingly painful. To be in your shoes and live daily with this knowledge is incomprehensible.
In spite of all of that, I would like to offer you hope. Real hope. Hope that lasts and hope that heals. My aim is to encourage you and shine a light into the darkness. I also would like to gently examine some of your presuppositions about suffering, so that you will reconsider some of your statements. Most of all, I would like to point you to the only Savior of the world, Jesus Christ.
First the Hope,
1. Ronan's suffering is not senseless.
Emily, as hard as this may be to understand, your son was born with Tay-sachs for a reason. The Bible makes it very clear that God is in control of suffering. He is sovereign. The LORD said to Moses
“Who has made man’s mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the Lord?" (Exodus 4:11). Many people struggle to understand this. How can a loving God cause suffering? There are many truths about the nature of suffering that I could discuss. However, since others have already done it (and done it better than I could), I will just refer you to
them. But, I will leave you with these glorious truths: God has promised us that He is working all things out for the good of those who love God (Romans 8:28). God is not a man that He should lie, nor a son of man that He should repent (Numbers 23:19). He will bring to pass everything that He has promised His children.
Your story makes me think of another disabled child. His story is recorded in John 9. This man was also blind, like your son. We are told that He was blind since birth. When Jesus disciples saw the man they asked Him "Who sinned that this man was born blind? Him or his parents?" Jesus replied "Neither he nor his parents sinned, but he was born blind so that the works of God might be done in him." I bet if you could ask that man, he would tell you that an entire lifetime of blindness was completely worth the surpassing privilege of being the vessel of God's mercy.
Sometimes the hardest part of enduring suffering is not having an answer to the question "why?". The mental anguish of uncertainty can be horrendous. Sometimes there is a very clear cause to our suffering, but many times there is not. But, no matter what happens to us we must never forget to look to Christ.
2. God cares about Ronan's suffering
We must never forget that no matter how severe our anguish or how unjust our circumstances, it will never compare to the anguish and injustice of the cross. Jesus Christ was the only person that has ever lived a sinless life. Yet, He chose to bear the reproach of the the cross, for us, ungodly sinners who hated Him (Romans 5:6-9, John 3:16; 1Peter 2:24; Isaiah 53:4-6).
The book of Hebrews informs us that "
we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need".
Additionally, the book of Colossians 1:15 tells us that 'Jesus Christ is the image of the invisible God', and Hebrews 1:3 that 'the Son is the radiance of God's glory and the exact representation of his being.' So we know that in examining the heart of Christ, we are getting a glimpse of the heart of the eternal Father. Throughout Jesus' earthly ministry, we see Him healing the sick (who sometimes don't even bother to thank him, Luke 17:11-17). The Gospel of Matthew tells us that when Jesus saw the multitudes who were weary and scattered like sheep without a shepherd, He was moved with compassion (Matthew 9:36). We see again and again in the Bible that Jesus has a heart for the poor, for children, for the suffering. God is not indifferent to the sufferings of the people of this world.
3. Though his body may be broken in this world, it will not be so in the next.
The truth is, the Lord may not choose to heal your son's disease in this life, but He has promised to heal all diseases in the next. We know from the Bible that sin entered the world through Adam
"Therefore, just as through one man sin
entered the world, and death through sin, and thus death spread to all
men, because all sinned—" (Romans 5:12) and that even the whole creation is subject to bondage because of man's sin. "For the earnest expectation of the creation eagerly waits for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of Him who subjected it in hope; because
the creation itself also will be delivered from the bondage of
corruption into the glorious liberty of the children of God. For we know that the whole creation groans and labors with birth pangs together until now." (Romans 8:19-22).
However, God has not given up on His creation. He has not abandoned us. God promises that one day He will return and set all things right again. There will be a new heaven and a new earth. He will wipe every tear from our eyes, and there will be no more death (Revelation 21:4).
In 1 Corinthians 15, the Holy Spirit, through the apostle Paul, describes the resurrection of the dead.
"
But Christ has indeed been raised from the dead, the firstfruits of those who have fallen asleep. For since death came through a man, the resurrection of the dead comes also through a man. For as in Adam all die, so in Christ all will be made alive. But each in turn: Christ, the firstfruits; then, when he comes, those who belong to him. Then the end will come, when he hands over the kingdom to God the
Father after he has destroyed all dominion, authority and power. For he must reign until he has put all his enemies under his feet. The last enemy to be destroyed is death."
And later in the same chapter:
"For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the
mortal with immortality, then the saying that is written will come true:
“Death has been swallowed up in victory.”
“Where, O death, is your victory?
Where, O death, is your sting?”
The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ."
Now, I have a few things I would like you to consider regarding your presuppositions about the nature of suffering.
1. Quality of life is indeterminable.
By what standards are we to judge what makes a life worth living? Some would say that living with a severe mental impairment would be unbearable, yet I have met many severely disabled children who are thankful for every breath they have been given.
Can your son understand the words that you say? Maybe not. Can your son understand that you love him when you hold him in your arms? Maybe yes. It's impossible for us to know how much a person understands. Therefore, you can have hope that when you cradle your son in your arms, he knows that his mommy loves him more than all the world. Your son may not have the length of life of most people, and he may not be able to do the things that other children do. But, that doesn't mean his life is completely devoid of any meaning. Your sweet little boy is a gift from the Lord to be treasured and loved for as long as the Lord allows you to have him.
2. You can't "save" your child from suffering.
Your desire to spare your child as much suffering as possible is natural and right. Mommies want to
protect their children. We want to be our babies' heroes. We hurt when
they hurt; their suffering is our suffering. But, ultimately, we are not in control of our child's fate. At the end of the day, even perfectly physically healthy people suffer in unimaginable ways, yet we do not say that it would be better if they had not been born. Suffering goes hand in hand with living. To live a life avoiding suffering is to never really live at all.
To quote C.S. Lewis:
" To love at all is to be vulnerable.
Love anything, and your heart will certainly be wrung and possibly
broken. If you want to make sure of keeping it intact, you must give
your heart to no one, not even to an animal. Wrap it carefully round
with hobbies and little luxuries; avoid all entanglements; lock it up
safe in the casket or coffin of your selfishness. But in that casket--safe, dark, motionless, airless--it will change. It will not be broken;
it will become unbreakable, impenetrable, irredeemable.”
3. Is it really merciful to kill those who are suffering?
There is much I would like to say about this; however, that will have to wait for another day. Instead, I would like for you to consider the following question: What if suffering serves a greater purpose than we can see?
4. Prenatal testing gives false positives.
It is true that the information pre-natal testing provides is neither
moral not amoral. It's what we do with the information that brings about a moral or immoral act. However, one CANNOT know in advance how a child's life will be based on prenatal testing.
Furthermore, while I do not intend to write an pro-life apologetic here (that's a topic for another post), I would like to point out that abortion always involves three people: the mother, the doctor, and the unborn child. We know from a purely scientific perspective that human life begins at conception. Abortion, no matter what the circumstances, always involves the killing of an innocent human being. As the saying goes, "Your right to swing your arms freely, stops at the other person's nose." A mother never has the right to take the life of her unborn child, end of story.
Furthermore, the capacity to end pregnancies at will does not make us more fully human, it makes us less than human.
5. Pregnancy is not a punishment for having sex.
It is a consequence and there is a difference. First
and foremost, pregnancy is a natural (and I would say, beautiful)
result of the physical union of one man and one women. It is the joining
of two people in the most intimate way possible and the creation of a
new soul. When you create a baby with someone, you are irreversibly linking your DNA with theirs and forever changing the genetic makeup of the human race. It's an incredible thing, really.
Part of being an adult is making decisions. All decisions have consequences, both positive and negative.
For example, if I choose to stay up all night playing video games
before an exam, I'm probably not going to do so hot. My poor performance would be a consequence of my decision. Sex is an adult
decision, and it comes with responsibilities--social, emotional, relational, and financial. To pretend that it is possible to have sex without consequences is foolishness. When an adult chooses to engage in it, they must recognize that should they or their partner get pregnant, they are now responsible for that child's life. They are not their own anymore, they have another life depending on them. That life is a person who has every much a right to life as they do.
In conclusion:
You see Emily, the answer to your son's suffering isn't found in the ending of his suffering. The answer to suffering is in the gospel.
So in light of that, I urge you to run to Christ, Emily.
"
Cast all your cares upon Him, for He cares for you." (1 Peter 5:7).
Jesus Himself said, "
Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."(Matthew 11:28-29).
God's promises are glorious, but they only apply to His children. The Gospel of John says "But as many as received Him, to them He gave the right to become children of God, to those who believe in His name: who were born, not of blood, nor of the will of the flesh, nor of the will of man, but of God." If today God has worked in your heart and you see that truly, you deserve death for your sins, then look to Christ and know that if you turn from your sins (repent) and put your trust in Jesus Christ as your only means of salvation (believe) that you will be forgiven.
“Today, if you will hear His voice,
Do not harden your hearts as in the rebellion.”
(Hebrews 3:15)
To all the mothers out there who are caring for terminally ill and permanently disabled children: Hang on, there is hope. Society may give up on your children. The medical community may give up on your children. But you must never give up on your children.
Never lose hope. You may never see the fruit of your labor on this side of eternity, but God will not forget your work and labor of love (Hebrews 6:10).