Several months ago my family received news this past March, concerning our unborn child. He has a condition known as anencephaly. This is a fatal condition of spina bifida, wherein the baby has only a brain stem. Often this condition is accompanied by another condition known as acrania, wherein the cranium in only partially formed. Our baby boy, Caleb, appears to have both. While we have sent out two prayer letters concerning our situation, we have continued to encounter some questions that we feel are better addressed in another forum, such as this blog post. Please feel free to contact us with either comments or more questions.
Personal Space
One question we have received concerns our personal space, specifically whether we are keeping our situation private. We have chosen to embrace the situation that has befallen us publically, as worship and as witness to God’s grace. We have been “strategic” in distilling our story, because we want the situation to retain a since of dignity and gravitas in its essence. Likewise, we want to respect other people having to receive and process something of this magnitude. In other words, despite our living in the Age of Facebook, we believe this is not status update material. We appreciate any manner of care and concern offered to us, even if some comments from time to time are less than perfect. We are less concerned with perfection than we are with actual real, live, human contact. In this case the perfect could become the enemy of the good. So, please feel free to talk with us about our situation. Yes, public prayer listings are just fine with us. Also, be forewarned that we take offers of help at face value!
Our Other Kids
Another question we have received has been if or how we have told our kids. Our kids are 8, 6, and 4 years old, all of whom have given their hearts and minds to Jesus. The Holy Spirit’s works of grace in their lives are manifold. We are both proud and grateful. It has been our goal from their infancies to live our faith openly with them and to raise them as full members of our families with growth in maturity-appropriate responsibility. So, we told them about Caleb and his deformity the night we found out, even showing them his sonogram pictures. Together we have all wept and prayed since then. They have been incredible troopers, accepting the gravity of the situation but also holding out for the legitimate possibility that God might choose to heal him. Annesley, our 8 year old has written two letters in Caleb’s prayer journal. (We have them for all of our children.) Below are Annesley’s two letters:
Dear Caleb,
I am your big sister. I cannot wait until I see you. I hope you like our family while you are with us. Our family members are your other sister Amie, your brother Alister, me, and Mama, and Daddy. You are a very special boy. Now I have two brothers!
Your big sister,
Annesley
—————
Dear God,
Thank you for Caleb. Even though he might be creepy, he is still a part of us. Please keep him alive as long as you can. It took a big turn. I was excited that we would have a cute little baby to play with, but now. We love him even now. Please heal him.
Caleb’s sister who loves you and him,
Annesley
Job’s Friends
Some have wondered whether we have encountered Job’s friends out there. We have yet to encounter anyone that has been self-righteous or downright mean, as nearly everyone we have encountered has meant well. There have been some comments with which we have met with less theological agreement than others. We are not exactly sure of how God is using His sovereignty in our situation, but if we, as the pro-lifers that we are, are going to credibly claim Psalm 139:13-16, then how can we fail to claim this regarding Caleb? While much of Caleb’s life and situation will remain a mystery on this side of Eternity, we do know that Caleb is made in the image of God and as such is a full human person. We also know that until Jesus returns, so long as we are on this side of Eternity, though we can and do taste a bit of the full redemption to come in the Spirit-filled life, we will, nonetheless, continue to live in a fallen, broken creation. So, this is the death of our son, due to some incomprehensible mystery from no fault of his own; God is not grooming little baby angel-cherubs for His heavenly rose garden. God is grooming us to offer grace and truth to one another in Christ, as we walk this wilderness together until we land on that happy shore of Heaven.
Job’s Wife
Some have wondered if we are angry with God. We are sad—what kind of birthday cake would Caleb have wanted for his third birthday? At times we are frustrated—Caleb is “perfect” from the chin down and is even the physically strongest child in utero for Rebekah to date. Even so, neither do we continue in anger with God, nor do we feel that God has committed an injustice with us. Caleb has three beautiful older siblings who are nearly ideal in physical and emotional health. Is that fair? We don’t want fair; we want mercy from His grace. God owes us nothing; we owe Him everything in the cross of Jesus.
A few have even demanded that we be angry with God, get in touch with that anger, and even curse Him. So, while we have not encountered as many of Job’s friends as we has expected, we have encountered Job’s wife. As we have just said, we have been sad, deeply sad. We have been frustrated. We have not suppressed these emotions; we have also not given these emotions free reign either. There are many places in this world that we would like to visit, but adrift in an ocean of subjectivism in the midst of Hurricane Emotion is not one of them. In the midst of this storm we have been anchoring ourselves to Jesus by our worship. So, we have been confessing our sorrows and His Word and truth simultaneously. This is the pattern for many of the Psalms, such as Psalm 13.
How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I take counsel in my soul
and have sorrow in my heart all the day?
How long shall my enemy be exalted over me?
Consider and answer me, O Lord my God;
light up my eyes, lest I sleep the sleep of death,
lest my enemy say, “I have prevailed over him,”
lest my foes rejoice because I am shaken.
But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.
I will sing to the Lord,
because he has dealt bountifully with me. (ESV)
God and Evil
This brings us to the question of how this situation has affected our faith. One thing is certain is that we have been affected, which is to also say that our faith has been affected. One more thing that is also certain is that His grace alone is empowering us to navigate this situation. We are normal, plain folks, who are believing, trusting, and following the Lord—who are living by faith. So, in one sense this is stretching us and growing us—both in our love for the Lord and in our compassion for others.
However, there is another more shadowy side of this question that is often meant—how can a God who is both perfectly good and perfectly powerful allow evil like to this to happen? It is an ancient question, some form of which has been posed by philosophers, such as J.L. Mackie, and plebes alike. It is especially disconcerting for charismatic folks like us, who strongly emphasize God’s miracle-working power is alive and well today.
While a full-fledged response will not be put forth in this moment, a brief response can be offered. Let us begin considering this question non-traditionally, borrowing from Ravi Zacharias. Traditionally, it has been felt and wrestled with and succumbed to from the human side. However, beginning from the divine side might be more helpful and constructive. This problem—the problem of evil—calls into question God’s goodness, power, and ultimately His existence. So, let’s pretend that God doesn’t exist and the Darwinian Naturalists are correct. This means that chance and randomness are the governing cosmic “order.” If this is so, then meaning in life is the result of chance and randomness. This then means that the terms “good” and “evil” are also random. Randomness is the quintessential indicator of meaninglessness. Thus, any event in life is meaningless—good or evil—is devoid of meaning and are useless descriptors of anything. This would include Caleb’s situation. This would include any hurt, any pain, any joy, any happiness. Is this really the world in which any of us live? And so, rather than detracting from God’s credibility, the reality of evil demands the reality of a perfectly good and all-powerful God. In Jesus Christ, the One who took upon Himself the sin of the world, we have a God of perfect love, who will one day bring full redemption to our fallen and broken world.