A special needs nest is never empty

October 21, 2014

An unsettling component of raising a child with special needs is the sense that, as a mother, my work will never be done.  

Of course I will always remain “mother” to my three sons, but not in the same way—James, Justin and Jon are healthy and independent adults, married with children of their own. But for Jill, my 22-year-old daughter with severe intellectual disabilities, independence is an impossibility.  

My husband, Lon, and I will never taste the sorrow or know the joy of an empty nest. We will remain Jill’s parents as day-to-day, minute-to-minute caregivers. Even though it isn’t any mother’s dream to raise a child with special needs, over time—through tears and heartache and vigorous kicking at the goads—I have grown to embrace Jill as God’s calling for my life.  

The hope of eternity

Caring for Jill is an enormous responsibility. She has a rare disorder called Dravet syndrome which causes years of uncontrolled and catastrophic seizures. Jill’s seizures didn’t appear until she was a seemingly perfect and healthy three-month-old baby, but over time they ravaged Jill’s brain, wiped out the milestones she had met, including all of her speech, and left her unable to mature intellectually past toddlerhood.  

Although meeting her needs is daunting, I think I am probably like most people: I have good days and bad days. Much of the time I want to soak life up, living each day I am given with gratitude and for the glory of God. Other times, I have a desperate longing for heaven. The Bible says that no eye has seen, no ear has heard and no human mind has conceived the things God has prepared for those who love him (1 Cor. 2:9).  

There is great comfort in knowing that I cannot even conceive of how wonderful heaven will be. The pain and sorrows of this world will pale in comparison. Like the old hymn says, “the things of this world will grow strangely dim, in the light of his glory and grace.” After years of loving and caring for Jill, this promise means so much. No matter your circumstance in life, keeping an eternal perspective is key.  

For us, Jill is an omnipresent reminder that this life isn’t all there is, and that we can’t even begin to imagine how wonderful eternity will be.  

Grace for today

In some ways, trusting God’s plan for eternity is easier than trusting him for today. The daily grind with Jill drains us emotionally and physically, and for parents of children with severe disabilities, many concerns loom on the horizon.

The burden of carrying all these unknown issues is just too great. I have to intentionally go back and remember God's faithfulness through the earlier years of Jill's life when we didn't know how we would make it through with all of Jill's seizures, constant calls to 911, and sleepless nights. Yet, by God’s grace, I survived all of this with three very active boys who also needed me.  

As I reflect on my life, I see so clearly that God not only asks to carry my burdens and concerns, but loves to carry them. It’s my job to let go of my anxiety about the future and acknowledge that God is sovereign and has a good plan for my life and for Jill’s life. I constantly remind myself that the Lord has always been there for me in the past, is walking with me now, and is already in my tomorrows.

Submitting to my calling

Submission always involves giving something up. Submitting to God’s call on my life—being Jill’s mom—means giving up dreams. I dreamt about teaching her to love her life and to love the Lord. I dreamt about sleepovers we’d have, how she’d grow in godly character and meet her prince charming. Grieving the death of all these dreams never really ends.  

As friends’ daughters go off to college and get married, I am reminded that Jill will never do these things. Lon will never walk Jill down the aisle. I think it’s important to face these realities as true losses. Jesus said that in this world we would have trouble, but he didn’t say buck up and move on. In fact, he wept at the loss of his friend Lazarus. So I let the tears flow over the dreams I have for Jill that will never be fulfilled.

Submission also means acquiescing to the alternative. Jill is not the young woman of my dreams, but God knew what he was doing. Jill is loving and accepting of everyone she meets. She doesn't see disability, power, success, color or ethnicity. She knows she is loved, and she doesn't fret or concern herself with the cares in this life. She never worries about food or clothing. We have promised to take care of these things and she never doubts that we will.

Jill is a picture of complete love and trust. The same love and trust the Father wants us to have for him.  

While I was pregnant with Jill, God gave me Isaiah 41:10: “Fear not for I am with you, be not dismayed for I am your God, I will strengthen you, I will help you, I will uphold you with my righteous right hand.” I want to live out this verse like Jill, never fearing, never dismayed, just relying 100 percent on my Caregiver.

I have learned through the years that whatever I surrender to God, he will use. My life and my calling may not be what I expected it to be, but the truth is that it’s never really been about me anyway. It’s all about him. Life as Jill’s mom has taught me this. I pray that, whatever my calling, I am a willing and malleable vessel for his glory.

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