Her name is Kourtney. I will tell her story in a moment.
First, however, I’d like to explain some theological matters about God’s relationship to those who are born with a disability or with limited giftedness and a perceived lack of physical beauty. What is God’s involvement, if any, in the way each of us was formed, our appearance, or who we would strive to become?
Many theologians seek to absolve God of all responsibility for the “mistakes of nature” by posing the argument that because of sin, nature is fallen. Therefore, God has a “hands off policy” about many things in this world such as natural disasters and people born with developmental, physical, or intellectual disabilities.
Such a view is neither supported by the Bible or, for that matter, logic. God is not the divine watchmaker who began the creation process then backed off from involvement in the day-to-day events on this planet. Yes, most assuredly, nature is fallen, but every Christian knows intuitively that God is still in charge—that is why we pray for beautiful weather for weddings and protection if we’re caught in a lightning storm. From the book of Job, we learn that even if some horrific event was caused by Satan, it was ultimately permitted by God. After losing ten children to wind and lightning, Job said, “The LORD gave and the LORD has taken away; blessed be the name of the LORD” (Job 1:21). He affirmed that God had ultimate authority—not nature and not Satan. Job traced such tragedies back to God.
But what about the size, shape and appearance of our bodies? What about those with congenital disorders or intellectual or developmental disabilities?
No need to guess. When Moses, who we believe had a stutter, complained to God about his assignment to return to Egypt and confront Pharaoh, God told him explicitly, “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). Let me be clear here: we are born as we are by divine appointment. While this might stir our anger against the Almighty, if we can accept it, it can be a means of emotional healing and hope.
Now to my great niece, Kourtney. She was born with a rare skin disorder called Epidermolysis Bullosa (EB for short). Skin is not the only thing affected. It also damages mucous membranes and affects the cornea, mouth, esophagus, and gastrointestinal. This is, quite frankly, the most painful disease you can imagine. And there is no cure.
A picture of my great niece Kourtney
Since the day she was born, Kourtney has had to be wrapped in tight bandages to protect her from blisters. She has dressings changed at least four times a week, each change can take as long as four hours. She has to be on a special diet to keep her esophagus from getting blisters. Due to blisters on her feet and lacking the energy to walk, she must use a wheelchair. There are days when she can’t open her eyes because of blisters breaking out on her cornea. Her fingers are fused together giving her hands a “mitten” appearance. Fevers are common and she suffers from unrelenting, chronic pain. She has been able to go to school, but only with the help of a special nurse constantly at her side. There is no easy way to put into words what she’s been through. She’s lost exact count, but she’s had more than twenty surgeries. Most recently, her hand was amputated after finding cancer in it.
But what about her relationship with God? Kourtney, despite all of these negatives, had the advantage of being born into a Christian home. She said she has believed in Jesus since the age of two and loves the Christian music played in her home. Yes, she has experienced anger against God when trying to understand who she was and why she was born this way. At times she had resentment about being chosen by God for this assignment. After all, she has an athletic sister, Shaelyn, who was part of a rope jumping team and has played volleyball and rugby.
In high school, Kourtney became more comfortable with herself, and with the help of supportive parents and friends, she came to a point of self-acceptance. She says, “I knew that God had big plans for me and He loved me and was proud of me, no matter what I looked like.” She can see herself as a woman who is loved by family, friends, and God despite the disease which is ravaging her body. Looking In the mirror, she says, she can see herself “as a version of normal.”
To quote her again, “I now know that God gave me this disease because He loves me and knew I would be able to handle living with it and I would someday be able to accept who I am.” Kourtney would tell us that thanking God for her disability brought emotional healing. It is when she realized that she was a part of a story so big that she couldn’t comprehend it, she could then see God—even in her pain and distress. Knowing that there is a larger purpose brings peace.
Kourtney is now 20 years old. She has already lived longer than most others with this disease. She has had a wide and heart-felt ministry to thousands of people by singing at events and giving her testimony (see below). Recently, two of her Facebook friends who have EB died. They were in their early 20s.
“I am not meant for this world,” she says.
And neither are we.
We might live a little longer than Kourtney, but our bodies—yes, yours and mine—have built-in irreversible disabilities. Rather than struggling with our limitations and the aging process, we are blessed if we see ourselves as a part of a much bigger story. Blessed are those who, like Job, can worship God even in the most difficult of circumstances. Peace can only be found by accepting what God has allowed to come into our lives.
We do not have to know God’s hidden purposes to believe that our lot in life is what God intended. Yes, we can take full advantage of modern medicine and the best of education and care. We can strive to make life better for ourselves and those around us. But we must accept what we cannot change with the sure knowledge that our lot in life was chosen for us by God.
The future is much brighter.
The Bible teaches that “we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body” (Philippians 3:20, 21). Thankfully, disabilities are never permanent; the glory of a beautiful new body awaits all those who put their faith in Christ. In that day, all suffering will be redeemed. We believe that God is good and wise. And powerful. Such faith is more precious than gold.
Believing in the existence of another world changes everything.
Want to be blessed by Kourtney? You can watch her story in the video below. You can also follow the family’s blog at: www.kourtneyk.blogspot.com
PULSE: Episode 13, Uncommon Joy from Northview Church on Vimeo.