3 Beautiful Passages for Parents of a Baby Not Expected to Thrive

Depending on the severity of the problem, parents are sometimes given the option (and even advised) to terminate the pregnancy. This is such a heavy burden to bear. It was not supposed to go this way. So much joy and hope had been wrapped up in the promise of a child, and now that’s all turned on its head. 

We mourn with those who are facing or have faced this decision. No one should have to make such a choice. This is not to suggest that doctors should withhold their concerns and keep the parents in the dark. But the pain from such a prognosis is sundering and profound. 

For those parents who have chosen to terminate such a pregnancy, know that God is still with you and he hurts alongside you. Your grief is his grief, and he is as concerned for you as he is for the soul of your child. His arms are open to you and he is still everything you need.

For parents who have chosen to continue with a pregnancy in the face of a terminal prognosis, the Father is walking with you through this with every step. You may feel anger toward him, and he understands that. You may feel that he is very far away, but he is near. And his nearness is your good. 

Scriptures are full of people facing impossible situations, questioning God, and persevering through the darkest times imaginable. They offer truth to light the dark path and hope for a day when life will always win.

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“Even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be” (Psalm 139:12-16).

These oft-quoted verses may confuse and even anger you. If God is the one knitting together children in the womb, why did he allow the current suffering? 

There is no simple, pat-you-on-the-head answer to this question, asked by parents through the ages. But consider the first line, which is often skipped when sharing this passage: 

“The night will shine like the day, for darkness is as light to you.” We are invited to place the horrible mystery of an unwell child into the realm of an understanding God. What is dark to us is light to him. Though we are incapable of understanding, he does understand.

And, while we’re at it, he understands the darkness in your heart as well. Grief and fatigue boil into anger, malaise, and questioning. The God who sees everything and knows it well understands your thoughts and your pain. 

“I am fearfully and wonderfully made.”

This declaration is true of every human ever created. Many parents experience feelings of unconditional love and acceptance for their child, even when they have no hope of one day receiving that love in return. 

There is a bond between parents and their children that holds true whether or not you’ve been able to hold your child in your arms or can recognize your spouse’s chin and eyes in your baby’s face. That bond is also a mystery, but a beautiful one. 

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“‘Lord,’ Martha said to Jesus, ‘if you had been here, my brother would not have died. But I know that even now God will give you whatever you ask.’ Jesus said to her, ‘Your brother will rise again.’ Martha answered, ‘I know he will rise again in the resurrection at the last day.’ Jesus said to her, ‘I am the resurrection and the life. The one who believes in me will live, even though they die. Do you believe this?’” (John 11:21-26).

Jesus is the resurrection and the life. This is why we honor him when we choose life even in the midst of so much pain. Peter called Jesus the “Author of Life.” 

In this story from the book of John, Jesus had chosen his timing carefully and boldly. Although this man was one of his best friends, he waited until sickness had overcome his friend’s body with death. Jesus wanted to show that he was able to overcome death with life. 

Again, take the time to read the whole passage, even if you know the story well. Why didn’t Jesus spare everyone the pain of death by healing Lazarus from a distance, as he had done with many others? He knew that pain was overcome-able, so to speak. Although it may feel that your pain is going to be the end of you, your story will not end with pain. Jesus is writing an ending that will make it worth it.

Jesus affirms Martha’s true understanding of the promise of the future: on the last day, the dead will be raised. But he also reminded her that he—the Resurrection and the Life in Person—was with her, standing right in front of her. And he is also with you. 

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“See, I will create new heavens and a new earth…I will rejoice over Jerusalem and take delight in my people; the sound of weeping and crying will be heard in it no more. Never again will there be in it an infant who lives but a few days, or an old man who does not live out his years” (Isaiah 65:17-20).

The weeping and crying with which we have become so familiar is a dark chapter in a very long story. This is the story of God’s redemption of humankind and the earth he’s given us. In works of art, the middle section is often dark and slow (think of a three-part movie series or the middle movement of a sonata.) We are in that middle time. 

Part of the purpose of these dark years is to teach us to look forward to what is coming. Take a few minutes to read all of Isaiah 65:17-25—a fuller description of the new heavens and new earth—and let your imagination make pictures to go along with Isaiah’s words. Dare to put your hope in such a time, even though it seems so far removed from us. 

Our prayer for you and your child is that you will experience the life-giving new creation of God, in this life and in the one to come. May you cherish each moment with your child, who is fearfully and wonderfully made. May the darkness you’re walking through now be only a season pointing you to the hope ahead. And may you experience the Author of Life walking alongside you.

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