When our daughter, Carly, was finally accurately diagnosed with Angelman Syndrome at two and a half years old, my husband and I were just beginning to learn what the Bible had to say about disability and suffering. In the years that followed, we became increasingly anxious to understand God’s heart on these matters. We tried to plant that understanding in our children as well. We desired a strong foundation of faith and a clear path shown by God’s Word. We wanted more than just peace of mind and hope from Jesus in the storm of disability. We needed solid Biblical principles from which we could make medical decisions and sort through many of the predicaments that would rise up out of our crisis.
I was a sleep-deprived, time-stretched and shaken mom of three young children, reading anything I could find to answer certain theological questions and to reassure me that God had not abandoned us. I grew up hearing Joni Eareckson Tada’s story, so I naturally sought out her books for wisdom. For example, her book When God Weeps was a comforting starting point. We were also fortunate to be connected with some wise ministry leaders who gradually introduced resources that helped us form sound thinking about our situation. Disability and the Sovereign Goodness of God by John Piper was instrumental in helping us form a biblical worldview of our circumstances.
It wasn’t long before our young daughters asked questions too. To the extent that Larry and I were equipped with God’s Truth, we were better able to cope, maintain hope and then raise our children to understand God’s heart (and to cope and find hope for themselves). By the time our children were in college, they needed to know how to explain their sister’s healing process and even her worth to a world that often challenged their values.
It hasn’t been easy. There just aren’t many pastors and youth leaders teaching on matters of disability and suffering. Thankfully, that is changing as seminaries add courses and churches become more intentional about inclusive and informed ministry.
Still, a new generation of special-needs parents don’t often hear or easily find answers to their spiritual questions. I’m discovering that many young parents have never heard the name Joni Eareckson Tada and far too few attend churches where attention is given to teaching on the theology of suffering, let alone doing so with careful attention to showing where those teachings come from in the Bible. Bookstores remain thin on books that speak to these issues from a biblical perspective. Parents often struggle alone to sift through what’s available and find relatable, reliable gems. Parents and their children need church leaders and Christian friends that lead them to Jesus, to specific truth for their situation and to the Christ-centered resources available.
Ultimately, five foundational truths and associated Scriptures played a fundamental role in guiding our family. I am grateful to have had the opportunity to collaborate on these with John Knight, a family friend and special needs parent who works with Desiring God. A few years ago, he and I co-presented these truths during a conference for church leaders that was designed to help them resist cultural collapse when navigating disability, injury, and chronic illness.
1. The fingerprints of God are on every person and circumstance.
For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Psalm 139:13-15 ESV
Then the LORD said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?” Exodus 4:11 ESV
For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. Ephesians 2:10 ESV
2. God is not constrained by anything.
I form light and create darkness, I make well-being and create calamity, I am the LORD, who does all these things. Isaiah 45:7 ESV
“Behold, I am the LORD, the God of all flesh. Is anything too hard for me?” Jeremiah 32:27 ESV
And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.” And he said to me, “It is done! I am the Alpha and the Omega, the beginning and the end. To the thirsty I will give from the spring of the water of life without payment.” Revelation 21:5-6 ESV
For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:17-18 ESV
3. Disability frees a person to multiply grace.
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5 ESV
The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him. Romans 8:16-17 ESV
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. James 1:2-4 ESV
4. God is first and foremost concerned with our hearts.
And he said to all, “If anyone would come after me, let him deny himself and take up his cross daily and follow me. For whoever would save his life will lose it, but whoever loses his life for my sake will save it. For what does it profit a man if he gains the whole world and loses or forfeits himself?" Luke 9:23-25 ESV
Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed. 1 Peter 4:12-13 ESV
And when Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.” Mark 2:5 ESV
5. God changes lives and churches when we engage with those who have an atypical life.
For consider your calling, brothers: not many of you were wise according to worldly standards, not many were powerful, not many were of noble birth. But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God. 1 Corinthians 1:26-29 ESV
On the contrary, the parts of the body that seem to be weaker are indispensable... 1 Corinthians 12:22 ESV
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:9-10 ESV
If you really fulfill the royal law according to the Scripture, “You shall love your neighbor as yourself,” you are doing well. But if you show partiality, you are committing sin and are convicted by the law as transgressors. James 2:8-9 ESV
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort. 2 Corinthians 1:3-7 ESV
Being part of churches who teach and embrace these life-honoring truths with us helps our family in countless ways. Knowing our friends share these values means they also value each of us, including our child with special needs. These truths provide grounding and lower our stress when managing life with disability and chronic illness. Applying them as principles for living simplifies our decision-making, gives purpose to our caregiving, and expands our vision for ministry beyond our own household. God’s truth has informed our choices about fundraising for medical research and participating in drug trials. It has impacted the way we pray for healing. Values based in God’s truth helped us prepare for guardianship and end-of-life decisions.
As our children went off to college and now grow in their careers, they have more confidence in God’s sovereignty and are better able to contribute in conversations about the value of all life. More and more often, people look to them for perspective about disability because of their unique sibling experiences. I am thankful for the ways these truths equip them to respond.
Our family could not be thriving through the experience of disability without biblically solid teaching about disability and suffering, a tremendously supportive faith community, and access to resources that teach the truth about God’s design.
Lisa Jamieson is an author, speaker and advocate who founded the Minnesota Disability Ministry Connection and serves as executive director of Walk Right In Ministries. Lisa had been working as a professional writer and corporate training designer for over 15 years when her third daughter, Carly, was born with Angelman Syndrome. In their first book together, Finding Glory in the Thorns, Lisa and her husband, Larry, recount the early years around Carly’s diagnosis and what happened when the community loved her (released by Ambassador International in 2008). Since then, Lisa has authored the Finding Glory Group discussion curriculum, Living Your Glory Story, and the children’s book Jesus, Let’s Talk which celebrates young people of all abilities from around the world and highlights key prayer words using American Sign Language. The Jamieson’s story has been featured internationally on television and radio including "Words to Live By," Canada's "100 Huntley Street" and My Refuge Radio Belize. Lisa and Larry have been married almost 30 years and have three grown daughters. Carly lives at home with her parents in Maple Grove, Minnesota.