Grace Displayed: Caring for a Child with Disabilities
Grace Displayed: Caring for a Child with Disabilities
The world of disability is rampant with opinions. Some friends of mine in an on-line community get angry if you suggest a disability is a negative thing; instead, they suggest we should celebrate it.
I suppose it must vary depending on how the child is affected, but for us disability has meant tremendous loss. Our son Calvin, a young boy of 6, struggles with chronic lung disease, spastic quadriplegic cerebral palsy, and a host of other conditions resulting from a brain malformation. Disability is not something our family celebrates, but we do celebrate the ways God’s grace is realized through disability.
God’s grace has sustained us in deep lament and has kept us from walking away in deep struggles of faith. God’s grace allows Calvin to be filled with joy and happiness in his disability. God’s grace has shown us more of His love for us as we care for Calvin. God’s grace has surprised us with unexpected joy in difficult places. God’s grace has made eternal reality more clear and our hope in Christ more urgent.
Grace in Lament
When disability enters a family, it hurts. We might think the best thing to do is get them “beyond” grief by telling them how others have overcome or become inspirational. But such empty optimism gives the message that we want to gloss over their loss and get on with the great and wonderful things God has planned.
I’m so glad our friends and family let us lament. They let us know it was okay to be really, really sad. They sat in the ashes with us as the losses grew. Though our first years with Calvin were more intense than anything I’ve experienced, it was a blessing to experience the grace of God through the care of our church, family, and friends. They were tangible reminders of God’s love for us when it felt like providence had left us out to dry.
Deep soul sorrow stripped us of joy. His constant suffering in the first two years made us lose desire for life itself. This is when it was so vital for us to be allowed to lament while simultaneously being reminded of God’s promises and character.
Grace in the Struggle of Faith
Most of us have learned from childhood two key aspects of God: He is sovereign and good. We know God is a gracious, good King who rules over even the most mundane details of our life. But sometimes it seems like those two things directly contradict each other.
When suffering and disability become a daily reality, it can be a struggle to reconcile that God is totally and thoroughly good and yet has providentially directed deep brokenness in our lives. Countless times we’ve prayed for healing, knowing He has all power. He could say one word and my son’s lungs would heal, his legs would walk, and his eyes would see. So if God is good and has power to change this, why doesn’t He?
It may seem easy to contemplate the textbook answers from a distance, but when you are holding a struggling little one in your arms, the urgency of your need and the resulting pain when God does not intervene can be devastating. The temptation is strong to believe that either God is not sovereign or God is not good. Nancy Guthrie compares it to standing in a hurricane and holding on for dear life to two posts: God’s sovereignty and God’s goodness. If God was sovereign and not good, we would not trust that He was doing it for our good and out of love for us. And if God was only good and not sovereign, it would be useless to pray to Him; He could only empathize with us! And so we hold tightly to both, knowing them to be true even though the mystery of providence fills our lives with a hurricane of pain.
God’s grace is the power that keeps us holding on to those two posts. It keeps us when we cannot keep ourselves. It keeps us from giving in to unbelief or a cynical view of God. It breathes life into the promises we read in His Word and restores our souls with hope even when circumstances worsen. Grace reassures us that our faith is not in vain.
Grace in Calvin’s Life
Our whole family has been called to live with disability, but Calvin is called to live with it personally. We may have to adapt to his care and grieve his losses, but he is the one who has to deal with so much more.
Imagine not being able to communicate with your family — to let them know when your belly hurts or when you want to be turned to another position. Calvin has endured multiple surgeries, frequent seizures, and many respiratory infections; he has large amounts of daily medications that give unpleasant sensations and side effects. His muscles are as stiff as a board in the morning, so we have to slowly unwrap him and stretch out his limbs one by one. His lungs are often full of fluid. It takes hours of coughing and suctioning each morning just to get him clear.
You would think that all this discomfort would rob him of all joy. The truth is, I’ve never been with anyone who has radiated so much peace and joy! God’s grace sustains him and allows him to experience joy and peace in the midst of a very difficult life. At the sound of our voice he beams wide smiles, and when we sing, he joins in with his whole body. When we talk to him, his eyes widen and he turns with an open mouth to kiss us.
God’s grace gives us hope for his eternal salvation. We trust in God’s covenant promises for our children and look forward to eternity when he will be able to tell us how God’s grace sustained him even while locked in a little body that didn’t work.
Grace in Seeing God’s Care for Us as We Care for Calvin
You wouldn’t expect a little kid to have such a big impact — especially not one with no control over his environment. But I don’t think there’s anyone in our family who has not been drastically changed because of Calvin. God truly does use the weak to show His power and grace.
So many times in caring for Calvin we’ve been reminded of God’s care for us. Calvin is helpless and yet we delight in him and want to do everything for him. The heavenly Father saw us utterly helpless and gave us the best possible gift: “For when we were yet without strength, in due time Christ died for the ungodly” (Rom. 5:6). And not only that, “He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?” (Rom. 8:32). It reassures me that even as much as I love my son, God loves us so much more, and His grace will supply for our every need.
Even after salvation, we are crippled by sin and halfhearted service. Yet Jesus sympathizes with our weaknesses, has compassion on us, and will carry us safely until at last we are with Him. I am allowed a daily picture of this as we care for Calvin. Even his jerky, uncoordinated gestures are pure beauty to me. How much more does the Lord delight in us through Christ?
Grace along the Way
If you had been able to see into the future and told me that Darryl and I would have a son who would never be able to walk, was nearly blind, had seizures, wouldn’t be able to eat, and would need a tracheotomy, I probably would have fainted. Or run away. Then if you had gone on to tell me that we would have immeasurable joy through this son, I would have thought you were totally out of touch with reality.
But that’s exactly what God does! He takes the unexpected, the most perverse of circumstances and infuses them with grace and surprise. He takes the bitter and mixes it with the sweetness of His grace to create totally new and unexpected joy that feels other-worldly.
We’re often physically and emotionally tired from caring for Calvin’s needs, and we don’t rejoice in his disability. But we do rejoice in the gift of Calvin; there is a unique sense of purity and joy that radiates from him. It’s hard to put into words the beauty that lies within that stiff little body. And it’s affected our entire family.
The rest of our kids can give meds, watch for seizures, and give him exhilarating rides in his wheelchair. When the kids need a little extra comfort, you can find them snuggled up to Calvin telling him their woes. Each day is challenging, but instead of our family falling apart, God has knit us together as a team of caregivers and fellow cross-bearers.
Grace to Wait for Future Restoration
Every painful moment awakens us to the greater truths of life. The painful moments remind us we’ve fallen and that our world is profoundly affected. But God has intervened, giving us His Son to rescue us from our greatest disability, separation from God. Not only has He provided a rescue from death, He gives great blessings of joy and delight in the midst of pain to show us His goodness and carry us home.
He will make all things new. Those words are a balm to hurting souls and bodies. Even though there are many consolations of grace along a hard road, we still desire the full restoration of our souls and bodies. Paul said the whole creation is groaning for it! We long for the day when we will no longer feel the pain of loss but will only see our gain in Christ. We long for the day when running to Jesus will not just refer to prayer but a physical reality. We long for the day when our faith will be made sight and we can cast our care-giving complaints and distrust off forever. We long to see our son made whole, spiritually and physically.
God has called us to live with disability, and while some days it feels like we can’t do another day, He says it’s just a little while. By God’s grace, we’ll do it with joy, knowing He will sustain us, grow us, and use us until His grace will burst forth into our complete restoration. Praise God for the life and hope we have in Christ!