Help and hope during a disability diagnosis: The story of Hannah

April 9, 2018

Eight years ago, our middle daughter, Lucy, was diagnosed with Autism Spectrum Disorder, ASD. Lucy is profoundly affected by Autism. Her sensory processing and cognitive function is severely delayed. It wasn’t until a little over a year ago that we finished toilet training, and we still help with most of her daily care tasks. We—usually my wife Megan—brush her teeth each night. And unless it’s Thursday, when we eat spaghetti, Lucy is not all that interested in food. So, we have to spoon feed or prod her to take another bite every 30 seconds or so.

These sorts of parenting tasks are normal for a toddler, but Lucy is 11 years old.

I’ve never been able to have a sit-down conversation with my daughter about her emotions. Lucy’s brain just doesn’t work that way. On the cold February day that Lucy was diagnosed, the psychologist told us the verdict, and then, with a deadpan expression on her face, she told us that 80 percent of couples who have a child with special needs get divorced.

I’m happy to report that the veracity of that specific statistic has been questioned in recent years, but studies show that the divorce rates among parents of children with disabilities are higher, and the risk of divorce lasts longer into adulthood than for parents whose children don’t. In that moment, we took the doctor’s words at face value. She essentially said to us: “Get help now!” Megan broke down crying immediately. What she had suspected for quite a while had been confirmed, and now she was grieving. Our life had changed. We’ll likely be caretakers for the rest of our lives.

While grief is a natural part of any special needs parent’s journey, it’s experienced differently by parents affected by Autism because of the range of possible outcomes. Many children with Autism grow up to be well-functioning adults. Most of these kids experience the social and communication struggles of Autism without intellectual delays. However, just over half, 56 percent of children with Autism have an intellectual disability as well. Our daughter fits within this category, but when she was three years old, we couldn’t be sure. So, we wrestled with conflicting possibilities for her future—possibilities that were and are outside of our control. Leading special needs ministry author Amy Fenton Lee writes about this predicament:

Should a mother grieve the life she envisioned for her child? Or should she buckle herself in for a bumpy ride. . . remaining hopeful and doing everything humanly possible to help her child reach their full potential? Sadly, the pressure is great to keep silent and process her emotions alone. Conversely, if she grieves publicly or openly conveys her concerns she may shape others’ view of her child. In fear of creating a self-fulfilling prophesy for her child’s future, a mother may remain tight lipped avoiding conversations revealing her daily realities.

As you can probably imagine, the way most parents of young children with Autism respond can vary from day to day. They experience conflicting emotions of grief and hope. Some days are filled with more sadness; others have more determination and hope. It’s certainly been this way for us.

A privileged man and his suffering wife

Recently, I’ve been processing the way our family grieved while studying the story of Elkanah and Hannah in 1 Samuel 1:1-20. As you jump into this passage, you see right away that Elkanah had a lot going for him. Elkanah had a legacy; his family heritage could be traced back four generations (v. 1). Elkanah was ambitious and wealthy; he was a man with enough money to pay two dowries and then support two wives and their kids (v. 2). Elkanah was also a religious man; he committed year after year to bring his sacrifices to the Lord’s tabernacle in Shiloh (v. 3).

The passage tells us that Hophni and Phinehas were the priests in charge of running worship services there. One chapter later, we discover that these guys were regular scoundrels (1 Sam. 2:12). When the people of Israel brought their sacrifices to Shiloh, they would steal some of the best cuts of meat for themselves instead of offering them to God.

By contrast—and I believe the author of 1 Samuel wants us to notice this—Elkanah carefully provided good food for his wives and kids. He was a caring provider and a family man. In his own day, he was the kind of man you’d want to emulate. But Elkanah’s wealth, his religious devotion, and his diligent care for his family couldn’t insulate him from suffering.

God brought suffering into Elkanah’s life through his second wife, Hannah. Verse two introduces us to her suffering in a matter-of-fact way: “[Elkanah] had two wives; one was called Hannah and other Peninnah. Peninnah had children, but Hannah had none.” Hannah was infertile. It wasn’t just that she didn’t have children. Hannah couldn’t have children. In verse five, the text says, “the LORD had closed her womb.”

Slow down for a moment and feel the significance of this. Hannah experienced the pain of grief. I’m certain Hannah expected to have children. She married a wealthy, strong, committed husband. She wanted to start a family. But kids never came, and it was painful.

In addition, I’m certain that Hannah also experienced awkwardness. When a couple desires to have kids but can’t, there are a lot of awkward moments. At Thanksgiving, unaware Aunt Edna might ask, “So, honey, when are you going to start a family?” And it’s hard to be around an overly fertile Myrtle at the women’s Bible study. I’ve known some couples who mark their calendar for the next Child Dedication Sunday as a day to sleep in. It’s just too hard to be there.

Hannah felt all of this, but I believe she felt fear. You see, in that culture a woman who didn’t have a son, didn’t have a future. Her welfare as she got older was dependent on her children. A son for her would be like Social Security and Medicare. If Elkanah died an untimely death, she couldn’t count on her sister wife to take care of her. She needed a boy who would grow to be a man and a provider. She needed a son to be her defender at the gate (Ps. 127:5). But she had none.

Elkanah’s pity versus true empathy

Hannah was hurting, and Elkanah could see it. What would he do? Now, it’s important to see—if you haven’t figured this out already—that Hannah is the hero of this story. The way she grieves, and the way she expresses faith in the midst of her grief is nothing short of amazing. She’s an example of how to practice lament.

One of the bad habits we learn in Sunday School is the tendency to identify with the heroes in the Bible’s stories and see them as our primary examples. But if I’m honest with myself, Hannah isn’t the person in this story with whom I should identify. I’m not really much like Hannah. I’m much more like Elkanah. And Elkanah doesn’t respond well to Hannah’s suffering.

Notice what Elkanah does. Verse five says, “But to Hannah he gave a double portion because he loved her.” It’s tempting to think Elkanah is being really sweet here. He genuinely loved her. As far as we can tell from the text, he didn’t blame her for her suffering, and that’s good. But then he begins giving her a double helping of food, and it’s hard to see how this helps: “Oh honey, I’m so sorry that you’re sad. Here’s another helping of mashed potatoes.” It’s sad. In that moment, Elkanah did just what most well-to-do, religious husbands would do. He plays God. He’s throws all of his resources at her problem, hoping against hope that he can write a better story for her. But his pity doesn’t help Hannah feel better.

To add insult to injury, what Elkanah does is a direct violation of God’s law (Deut. 21:15-17). Because Peninnah had born the firstborn son, the oldest who would receive the inheritance was the only one at the table who should have been given a double portion. Just as Rebekah favored her younger son Jacob (Gen. 25:28), and Jacob in turn favored his son Joseph (Gen. 37), so Elkanah disobeyed God and made Hannah his favorite. And, of course, the favoritism backfired.

Peninnah gets jealous, and she becomes vindictive. Verse seven tells us that she goads and provokes Hannah. You can imagine the things she said: “I don’t even know how I keep all of you children fed; there’s just so many of you!” This sort of prodding went on and on. Not just day after day, but month after month and year after year. Hannah’s emotional pain became so intense—especially at the annual feast time—that she would refuse to eat. So, Elkanah responds again in verse eight – and here is where it’s so clear in the text that he just doesn’t get it: “Hannah, why are you weeping? Why don’t you eat? Why are you downhearted? Don’t I mean more to you than seven sons?” Elkanah is essentially saying: “Baby, you’ve got me. Aren’t I enough for you?” Instead of grieving with Hannah, Elkanah makes her pain about him.

This is so convicting to me, because I’ve done and said the same kinds of things. After Lucy’s diagnosis, I immediately got to work—setting up therapy sessions, investigating government programs to help us pay for treatment. Those were good and necessary things, but what I didn’t do was stop and feel. In fact, I’ve tried to handle Megan’s pain with my work ethic or exasperation more times than I can count. And when I’m making Megan’s pain about me, she tells me that it just makes her feel distant—like I obviously don’t understand; like she hasn’t been heard.

One of my regular prayers for myself and the church—both my own church and the larger church—is that we’ll grow in empathy (Rom. 12:15). This is an especially felt need for families with disabilities. Some disability ministry leaders have estimated that 80 percent of people with disabilities are unchurched. And according to a 2004 Lausanne Committee paper, only five to 10 percent of the world’s disabled population has been effectively reached with the gospel, making the disability community one of the largest unreached—some say under-reached—or hidden people groups in the world. In my experience, it’s fairly regular for families to drop out of church after a diagnosis.

If you know someone who is currently going through a diagnosis process, one of the best things you can do for them is to be there, to listen without sharing opinions or ideas, to ask questions, and to allow yourself to feel the pain. Amy Fenton Lee suggests asking questions like these:

Hannah’s profound faith

By the time we get to verse nine of 1 Samuel 1, Hannah is at the end of her rope. As soon as the festival dinner was over, she left the table and headed to the tabernacle to pray. She “came to church,” and she broke down in tears. Hannah’s instincts were good. When we’re hurting, God wants us to come to him. But, sadly, Hannah was let down again. Hannah was pouring out her whole self, body and soul, in sobs to the Lord. Then, old Eli, the priest, who was supposed to represent God’s compassion to his people, just judged her. He saw her disheveled and in tears, mouthing the words to her prayer, and he assumed she was drunk. He outright rebukes her, “Put away your wine” (v. 14).

Maybe that’s you. Maybe you’ve been hurting from a special needs diagnosis, and you followed your good instincts. You went to a small group or even your pastors, but it was just so clear they didn’t get it. They couldn’t feel your pain. Here’s the hard truth. Sometimes spouses will let us down. Sometimes pastors will let us down. But after we exhaust every option, God is still there, and he knows us in our weakness.

The amazing thing about Hannah’s faith to me is that she sees this truth, and she doesn’t demand that God make everything right in her life. I pray the kind of prayers that will fix my problems—“Heal my child. Get Lucy into that new school. Prevent our favorite therapist from moving away.” But Hannah is willing to give up the very thing that will help her circumstances. She prays (v. 10), “LORD Almighty, if you will only look on your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life.” I read this and I think: “Hannah, what are you doing?” She’s got one shot at a son who can take care of her when she’s old, and she’s going to send him away into the ministry. Sister, that’s not going to help your financial situation!

But this is an amazing prayer because it shows us that being heard and known by God is more important for Hannah than changing her present experience. Psalm 63:3 says, “Your love, O Lord, is better than life. So, my lips will praise you.” Hannah is confident enough in God to let him write her story. Hannah is confident to seek first God’s kingdom and let him take care of the rest. And God shows up right on time. He reaches down into the ashes of her mourning and he brings resurrection! Look at verses 19-20:

Early the next morning they arose and worshiped before the Lord and then went back to their home at Ramah. Elkanah made love to his wife Hannah, and the Lord remembered her. So in the course of time Hannah became pregnant and gave birth to a son. She named him Samuel (1 Sam. 1:17-20a).

I love those words: “The Lord remembered her.” God answered Hannah’s request, and he gave her a baby. Then, Hannah named the baby Samuel. It’s a play on words. Samuel sounds like the Hebrew phrase “heard by God.” This baby was a reminder for her that even when no one else was listening, God heard her. While I want to grow in empathy, and I pray that the church will grow in empathy, that’s not where our hope for families with disabilities rests. Our hope is in the God who hears. God won’t always give us what we ask for, but he knows our pain. He hears us. And he delights in reaching down into our brokenness to make something beautiful out of our weakness—just as he did with Hannah.

Jared Kennedy

Jared is the husband of Megan and father to Rachael, Lucy, and Elisabeth. After serving fifteen years on staff at local churches, Jared now works as an editor for The Gospel Coalition, coaches children's ministers through Gospel-Centered Family, serves on the Theological Advisory Council for Harbor Network, and teaches as an adjunct instructor … Read More

Article 12: The Future of AI

We affirm that AI will continue to be developed in ways that we cannot currently imagine or understand, including AI that will far surpass many human abilities. God alone has the power to create life, and no future advancements in AI will usurp Him as the Creator of life. The church has a unique role in proclaiming human dignity for all and calling for the humane use of AI in all aspects of society.

We deny that AI will make us more or less human, or that AI will ever obtain a coequal level of worth, dignity, or value to image-bearers. Future advancements in AI will not ultimately fulfill our longings for a perfect world. While we are not able to comprehend or know the future, we do not fear what is to come because we know that God is omniscient and that nothing we create will be able to thwart His redemptive plan for creation or to supplant humanity as His image-bearers.

Genesis 1; Isaiah 42:8; Romans 1:20-21; 5:2; Ephesians 1:4-6; 2 Timothy 1:7-9; Revelation 5:9-10

Article 11: Public Policy

We affirm that the fundamental purposes of government are to protect human beings from harm, punish those who do evil, uphold civil liberties, and to commend those who do good. The public has a role in shaping and crafting policies concerning the use of AI in society, and these decisions should not be left to those who develop these technologies or to governments to set norms.

We deny that AI should be used by governments, corporations, or any entity to infringe upon God-given human rights. AI, even in a highly advanced state, should never be delegated the governing authority that has been granted by an all-sovereign God to human beings alone. 

Romans 13:1-7; Acts 10:35; 1 Peter 2:13-14

Article 10: War

We affirm that the use of AI in warfare should be governed by love of neighbor and the principles of just war. The use of AI may mitigate the loss of human life, provide greater protection of non-combatants, and inform better policymaking. Any lethal action conducted or substantially enabled by AI must employ 5 human oversight or review. All defense-related AI applications, such as underlying data and decision-making processes, must be subject to continual review by legitimate authorities. When these systems are deployed, human agents bear full moral responsibility for any actions taken by the system.

We deny that human agency or moral culpability in war can be delegated to AI. No nation or group has the right to use AI to carry out genocide, terrorism, torture, or other war crimes.

Genesis 4:10; Isaiah 1:16-17; Psalm 37:28; Matthew 5:44; 22:37-39; Romans 13:4

Article 9: Security

We affirm that AI has legitimate applications in policing, intelligence, surveillance, investigation, and other uses supporting the government’s responsibility to respect human rights, to protect and preserve human life, and to pursue justice in a flourishing society.

We deny that AI should be employed for safety and security applications in ways that seek to dehumanize, depersonalize, or harm our fellow human beings. We condemn the use of AI to suppress free expression or other basic human rights granted by God to all human beings.

Romans 13:1-7; 1 Peter 2:13-14

Article 8: Data & Privacy

We affirm that privacy and personal property are intertwined individual rights and choices that should not be violated by governments, corporations, nation-states, and other groups, even in the pursuit of the common good. While God knows all things, it is neither wise nor obligatory to have every detail of one’s life open to society.

We deny the manipulative and coercive uses of data and AI in ways that are inconsistent with the love of God and love of neighbor. Data collection practices should conform to ethical guidelines that uphold the dignity of all people. We further deny that consent, even informed consent, although requisite, is the only necessary ethical standard for the collection, manipulation, or exploitation of personal data—individually or in the aggregate. AI should not be employed in ways that distort truth through the use of generative applications. Data should not be mishandled, misused, or abused for sinful purposes to reinforce bias, strengthen the powerful, or demean the weak.

Exodus 20:15, Psalm 147:5; Isaiah 40:13-14; Matthew 10:16 Galatians 6:2; Hebrews 4:12-13; 1 John 1:7 

Article 7: Work

We affirm that work is part of God’s plan for human beings participating in the cultivation and stewardship of creation. The divine pattern is one of labor and rest in healthy proportion to each other. Our view of work should not be confined to commercial activity; it must also include the many ways that human beings serve each other through their efforts. AI can be used in ways that aid our work or allow us to make fuller use of our gifts. The church has a Spirit-empowered responsibility to help care for those who lose jobs and to encourage individuals, communities, employers, and governments to find ways to invest in the development of human beings and continue making vocational contributions to our lives together.

We deny that human worth and dignity is reducible to an individual’s economic contributions to society alone. Humanity should not use AI and other technological innovations as a reason to move toward lives of pure leisure even if greater social wealth creates such possibilities.

Genesis 1:27; 2:5; 2:15; Isaiah 65:21-24; Romans 12:6-8; Ephesians 4:11-16

Article 6: Sexuality

We affirm the goodness of God’s design for human sexuality which prescribes the sexual union to be an exclusive relationship between a man and a woman in the lifelong covenant of marriage.

We deny that the pursuit of sexual pleasure is a justification for the development or use of AI, and we condemn the objectification of humans that results from employing AI for sexual purposes. AI should not intrude upon or substitute for the biblical expression of sexuality between a husband and wife according to God’s design for human marriage.

Genesis 1:26-29; 2:18-25; Matthew 5:27-30; 1 Thess 4:3-4

Article 5: Bias

We affirm that, as a tool created by humans, AI will be inherently subject to bias and that these biases must be accounted for, minimized, or removed through continual human oversight and discretion. AI should be designed and used in such ways that treat all human beings as having equal worth and dignity. AI should be utilized as a tool to identify and eliminate bias inherent in human decision-making.

We deny that AI should be designed or used in ways that violate the fundamental principle of human dignity for all people. Neither should AI be used in ways that reinforce or further any ideology or agenda, seeking to subjugate human autonomy under the power of the state.

Micah 6:8; John 13:34; Galatians 3:28-29; 5:13-14; Philippians 2:3-4; Romans 12:10

Article 4: Medicine

We affirm that AI-related advances in medical technologies are expressions of God’s common grace through and for people created in His image and that these advances will increase our capacity to provide enhanced medical diagnostics and therapeutic interventions as we seek to care for all people. These advances should be guided by basic principles of medical ethics, including beneficence, non-maleficence, autonomy, and justice, which are all consistent with the biblical principle of loving our neighbor.

We deny that death and disease—effects of the Fall—can ultimately be eradicated apart from Jesus Christ. Utilitarian applications regarding healthcare distribution should not override the dignity of human life. Fur- 3 thermore, we reject the materialist and consequentialist worldview that understands medical applications of AI as a means of improving, changing, or completing human beings.

Matthew 5:45; John 11:25-26; 1 Corinthians 15:55-57; Galatians 6:2; Philippians 2:4

Article 3: Relationship of AI & Humanity

We affirm the use of AI to inform and aid human reasoning and moral decision-making because it is a tool that excels at processing data and making determinations, which often mimics or exceeds human ability. While AI excels in data-based computation, technology is incapable of possessing the capacity for moral agency or responsibility.

We deny that humans can or should cede our moral accountability or responsibilities to any form of AI that will ever be created. Only humanity will be judged by God on the basis of our actions and that of the tools we create. While technology can be created with a moral use in view, it is not a moral agent. Humans alone bear the responsibility for moral decision making.

Romans 2:6-8; Galatians 5:19-21; 2 Peter 1:5-8; 1 John 2:1

Article 2: AI as Technology

We affirm that the development of AI is a demonstration of the unique creative abilities of human beings. When AI is employed in accordance with God’s moral will, it is an example of man’s obedience to the divine command to steward creation and to honor Him. We believe in innovation for the glory of God, the sake of human flourishing, and the love of neighbor. While we acknowledge the reality of the Fall and its consequences on human nature and human innovation, technology can be used in society to uphold human dignity. As a part of our God-given creative nature, human beings should develop and harness technology in ways that lead to greater flourishing and the alleviation of human suffering.

We deny that the use of AI is morally neutral. It is not worthy of man’s hope, worship, or love. Since the Lord Jesus alone can atone for sin and reconcile humanity to its Creator, technology such as AI cannot fulfill humanity’s ultimate needs. We further deny the goodness and benefit of any application of AI that devalues or degrades the dignity and worth of another human being. 

Genesis 2:25; Exodus 20:3; 31:1-11; Proverbs 16:4; Matthew 22:37-40; Romans 3:23

Article 1: Image of God

We affirm that God created each human being in His image with intrinsic and equal worth, dignity, and moral agency, distinct from all creation, and that humanity’s creativity is intended to reflect God’s creative pattern.

We deny that any part of creation, including any form of technology, should ever be used to usurp or subvert the dominion and stewardship which has been entrusted solely to humanity by God; nor should technology be assigned a level of human identity, worth, dignity, or moral agency.

Genesis 1:26-28; 5:1-2; Isaiah 43:6-7; Jeremiah 1:5; John 13:34; Colossians 1:16; 3:10; Ephesians 4:24