What our family is learning from our girls with special needs

God’s plan and faithfulness on display

October 15, 2020

Anytime I am asked to share our story, I am equal parts excited and nervous. Our story is not a typical one, thought it started out very charmed.  We easily could have been the stock photo for a new picture frame. I married my college sweetheart, a camp friend from high school. We both graduated from college, began our careers, got married, and moved to Dallas. We had a plan, and we were confident that our plan was surely God’s plan.  

When “typical” no longer defined our family 

After a few years of marriage, we started our family. We had a beautiful, healthy, strong-willed daughter. A couple of years after that, we had a handsome, healthy, and athletic boy. We continued moving forward with our plans and working hard at worldly success. In the fall of 2008, everything changed. I was pregnant with our third child. My pregnancy was normal, and there was nothing to be concerned about—until I went into labor five weeks early. From that moment on, our family has been anything but “typical.”  

Libby was born, and we instantly knew that something was not right. Multiple doctors and nurses came in and out, having very hushed conversations. They took her out and did not bring her back. She was taken to the NICU with a number of concerns, the most significant being respiratory and cardiac. We were told that she had a very serious heart defect and would require surgery. She was struggling to transition from the womb to the world and was requiring assistance to breathe, eat, and rest. She had open heart surgery at 10 weeks old, and it was shortly after that surgery that we were told that Libby had a very rare chromosomal abnormality called Trisomy 16P. 

We were told that the chances of her celebrating a second birthday were highly unlikely. We heard many things from doctors in the days following the diagnosis. We were told to “take her home and love her while you have her.” We were told “if you had not already repaired her heart, we would tell you not to bother—she won’t live long enough for the surgery to be worth it.” We were told to carefully consider our future family planning. Our heads and hearts were spinning. 

One of the most encouraging things we heard was, “Who knows?” It was a comfort and relief when a very knowledgeable physician would admit that maybe he or she did not know what Libby’s future looked like. It was in these moments that I could feel the Lord nudging me and saying, “I know.”  

Libby is now 12 years old. She is healthy and happy and truly a miracle from God. Life with Libby has been anything but easy. We have felt very much like navigators of a foreign territory. We have not found another family or even medical professional that has experience with Trisomy 16P. When Libby was diagnosed, there were 30 reported cases. Libby does not walk or talk; she has the cognitive ability of a nine-month-old baby. 

Despite the difficulty and stress, we decided to continue to grow our family. We met with doctors and specialists. We were told that it was a scientific impossibility that we would have another child with Trisomy 16P. In October of 2011, after a very typical pregnancy, we welcomed Hannah Jane into our family. Hannah’s heart was healthy, she was not premature, she was breathing on her own; however, we both knew that something was atypical. We were told that she also has Trisomy 16P. We were shocked and devastated all over again. How could this be? 

How our family experiences God’s faithfulness 

Although the diagnosis was the same and the girls are technically genetic twins on paper, our feelings were different the second time. I never want to sugarcoat it—it was hard. We cried many tears. We questioned God’s plan. We felt angry. At the same time, we felt a peace and a calling. We have had hundreds of doctor appointments, surgeries, and hospitalizations. We have had such extreme mountain-top experiences, like when Hannah walked over 700 steps in her gait trainer a few weeks ago at school. We have also had dark, scary experiences in the valley. We have walked through nights in the ICU where we didn’t know if our girl would live. We have sat through surgeries that were long and life-threatening. We have flown in care flight helicopters and been transported by ambulances more times than I can count.  

Here is what I have learned: God is God over the peaks and valleys. God was and is faithful every moment in between. He has been faithful to provide through his Word, his presence, and his people. I am grateful that God’s Word addresses fears and pain, anger and sadness. I am thankful that God does not turn away from our emotions. And I am grateful he continually speaks through his Word and his people. 

For anyone walking a similar path, I encourage you to find a Bible-believing, Gospel-preaching church that will minister to you and your family. We have been been a part of three different churches—all who have loved us well and cared for our girls. 

I would also encourage you to find parachurch ministries that minister to you and your entire family. Our very favorite event every year is attending Family Camp with Joni and Friends Texas. Joni Earekson Tada is a hero of ours and has established an unbelievably life-giving ministry that cares for families with disabilities. 

And most importantly, I would encourage you to press in to God’s Word and discover what he says about suffering. John 16:33 has become my life verse, “I have said these things to you that, in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world” (ESV).

I fought the reality that our life is anything but typical for a while, but now I embrace the calling and blessing that we have been given. Our girls have taught us so much about God—his faithfulness, provision, and love for us. Our girls do not speak, but they communicate the gospel every single day. Our plan did not look like God’s plan. In 2013, his plan surprised us with welcoming our fifth child into our family. Campbell Grace is a healthy, active, extremely talkative seven-year-old now. His grace abounds, and his plan is always better—for his glory and our good. 

Mary Bales

Mary Bales has been married to Connor for 20 years. They have five children: Kathryn, 16; Coleman, 14; Libby, 12; Hannah, 8; Campbell, 7. Two of their daughters, Libby and Hannah, have very severe special needs. They live in Prosper, Texas, where Connor is the lead Pastor on the North … 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