How my sister with Down syndrome changed everything

Choosing life is not easy, but it’s better

April 20, 2022

Obedience to God is part of the Christian life. When we become followers of Jesus, we set aside our former self and take our place behind Jesus. He leads us step by step. As painful and tumultuous as the road may be, we set our sights on him as our Lord and Leader. For my family, this call to obedience was put to the test with a diagnosis of Down syndrome for my younger sister. I was almost 3 years old, so the trial that my parents endured in those early months and years was lost on me. 

Choosing life when obedience is hard

I can’t imagine what my parents felt as they heard doctors tell them my sister would never walk, never talk, have severe disabilities, and would likely suffer major heart problems. They were terrified at the life their child would have. As they processed this diagnosis, they made a decision to choose life.

This child was still a human being, which meant that her life was worth living even if the road ahead turned out worse than the doctors could imagine. It was easy for my parents to choose life for my sister because they believe life is precious and created by God, but this decision was through tears, heartache, and prayer. Yet, my family was forever changed by my sister, Amanda. 

In the early years, my parents faced uncertainty about her health and development, always wondering what she would be able to do with her life. They had to fight not to compare her to other kids her age and accept that her life would look different than their other two daughters. On top of this, they worried about her safety, how others treated her, if she was being bullied or made fun of without being able to tell my parents, and if she was being included with the other kids. 

As her sister, I learned to be less needy as a child so that my parents could give Amanda the attention she needed. No one forced me to make this decision, but it was my natural response to a sister who needed special care. Though this learned independence was not all bad, I did have to relearn as an adult to ask for help and be vulnerable with my needs. I also felt and still feel personally wounded when I hear jokes about those with special needs, and recoil when the word “retarded” is used in name-calling. 

Amanda is now an adult, and the difficulties of her life are not all over. She will never have the “normal” life that my youngest sister and I had. She won’t go to college, get married, or have a big social life. It is difficult for us, as her family, to know that she won’t do the same things that other 20-somethings do. 

Gifts from my sister

One could read these difficulties and ask if her life was really worth preserving. Did my parents make the right decision? Were the trials of delayed speech, the staring from people in public, the struggles with the education system, and the extra attention she required worth it? Wouldn’t it have been easier if Amanda never existed?

Easier? Yes. Absolutely. There is no way to deny that my family would have an easier time without her. But ease of life and lack of trials is not the point. The point is that Amanda is a person, and all people are worth preserving at any cost to those around them. 

What I haven’t told you yet is that Amanda made our lives better — in a multitude of ways. 

She teaches us about love. Amanda loves her family and her friends unconditionally. When she meets another human, she treats them with the honor and respect they deserve. All aspects of human life are incredible to Amanda. She is thrilled when someone has a baby, gets married, starts a new job, goes on a vacation, or even eats at a restaurant or visits a bookstore. Whether it is my engagement announcement or a picture I took of a tree, Amanda leaves a comment on social media that says “that is amazing Allyson” or “I can’t believe you did that – that is so cool.” And you know what is incredible? She actually means it. 

She teaches us about gratitude. Beyond her love of others, she has the most pure and grateful outlook on life. When she was younger, a single Reese’s peanut butter cup would make her so excited. At Christmas, she is the most thankful of anyone for what she receives. The smallest, most simple gifts or activities bring delight to her face and, “I can’t believe it!” to her lips. 

She teaches us about humanity. When she was younger, she played softball and was an amazing catcher. As a teenager (and even as an adult sometimes), she will roll her eyes at my dad’s jokes or my mom’s requests that she doesn’t like. She remembers details about her favorite actors and can tell you exactly when Dwayne “The Rock” Johnson was born, where he is from, and what his favorite foods are. She makes fun of us, laughs at silly things, goes to her dance class, and tells me about the annoying people she encounters. She hugs, cries, gets mad, does her chores, writes in journals, and eats her favorite foods. Amanda is a person, a human life, not all too different from you and I. 

She affects the lives of those around her. If you were to divide Amanda’s life between the joys and the trials it brings, the joys would break the ground compared to the trials. Joy incomparably outweighs trial. Amanda enriches the lives of those around her. In her softball days, opposing teams would cheer for her when she got a hit. At school, she knew all the “cool kids” and would receive a string of high-fives from all the athletes. Around the dinner table, her belly laugh can brighten your day immediately. Everyone she meets is her new best friend, and she will care deeply for all she knows. You cannot walk away from an encounter with Amanda and not be blessed by it. 

Life may have been easier without Amanda, but it would not have been better. She is a daughter of the Most High God. She was knit in my mother’s womb (Psa. 139), fashioned by God, and her life has been all grace. My parents chose life, and they chose obedience to God. For every hardship we have endured as a family, the grace of God shown through Amanda’s life outshines it all. 

Following behind Jesus in obedience is worth every step. The kindness of God might not always look like we expected, and his blessings might not always be obvious to us. But faithful obedience to him will always, always, always result in his grace meeting us. One day, our faith will become sight when we meet Jesus in glory. He will be our prize, and he will be our reward. 

Allyson Howell

Allyson Howell (Todd) is a communications associate for the Patients' Rights Action Fund. She holds an undergraduate degree in Christian Ministry and Humanities and a Master of Divinity from Midwestern Seminary. Allyson is a member and the deacon of Women's Ministry at Wornall Road Baptist Church in Kansas City, Missouri, … 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