some days everything changes
Some days everything changes. God doesn’t tell us when those days will be; usually they just happen. For my family, January 2, 2001, was one of those days. The excitement of my sister’s impending birth gave way to the reality of her life…not everything was okay. The first time my brothers and I visited Faith in the NICU, it finally settled in that something was wrong; she was too weak to move, to eat, or to even open her eyes. Faith lay in her crib like a rag doll, while the machines around her groaned and beeped, monitoring and measuring this young life.
Those initial days soon turned into weeks, and Faith came home to join our family. Now able to open her eyes, but still unable to eat or move or hold her head up, we wedged her into the corner of the couch and crowded around our little sis. Soon everyone began to pitch in as we learned how to help take care of Faith. The tasks were novel to us, but it never struck us as strange that feeding Faith meant using a plastic syringe to pump 80 CCs of formula through a tube in her nose.
Meanwhile, Faith attended a steady stream of doctors’ appointments, seeking answers to the peculiar questions that her life posed. Tests were run, and potential diagnoses were crossed off the list one by one. After a chromosomal analysis, the doctors focused in on a rare condition with a strange name, Prader-Willi Syndrome. It’s easy to take your 15th chromosome for granted, until it doesn’t do what it’s supposed to do. When life gives you a 1 in 25,000 chance of something happening, sometimes, you are the one.
A diagnosis is bittersweet. In one way it brings relief: a sense of closure to the process of unanswered questions and an uncertain future. But a diagnosis is also scary, because it puts a label and a story to the future of an eight month old baby that you care about so much. The stories accompanying the Prader-Willi diagnosis were hard…unencumbered eating leading to extreme obesity and an early death. Not only were the dreams and the hopes for a young life shattered, they were seemingly ground into a fine dust by the finality of the existence that awaited Faith.
As time passed, Faith began to grow and develop. Therapists visited, doctors prescribed, muscles gained strength and Faith started to show incremental progress. While every parent savors their child’s first steps, Faith’s first steps had an extra element of accomplishment and excitement. Her smile and giggle endeared her to us all, and she soon became the highly sought-after lead of all of the Finley home films and was the proud recipient of 37 different nicknames. Every day of high school started with each brother getting a hug, kiss, and double-monster high-five. Few kids had the vivacity for life, people, and pets the way that Faith did.
Nobody’s life is easy, but as the years passed Faith’s path posed special challenges. Through the difficulties of her life, God continued to work in and care for Faith. He provided the opportunities and finances for the surgeries and treatments that were needed due to her complications from Prader-Willi Syndrome. How does a rural pastor’s family pay for over a million dollars of health care? The answer is to let God pay for it, and He did.
School soon became a highlight for Faith, as it gave her an opportunity to be a part of our community and around kids her own age. Faith loves people, and soon you couldn’t go anywhere with Faith without running into somebody she knew. Everyone in Winchester knows that Faith is going to make sure that your dog or cat is alive and doing well! Middle school brought the opportunity to be in the pep club, the cheering section for all of the sports teams, and Faith soon began to refer to “my games” coming up on the schedule. Academics are a challenge, but who needs math and science and history when helping mom around the house is so much fun?
The irony is not lost on me as I help Faith study for a 7th grade science test on genetics. The terms and concepts fly over her head, a direct result of her own unwilling encounter with this material, not abstractly in some classroom, but experientially in her earliest moment of life. I can’t help but wonder from time to time why all of this has happened? Why did Faith’s 15th chromosome not come together correctly? Why did God choose this path for Faith? What is His plan for my sister’s life?
Special needs is a broad brush that we use to categorize any person who experiences difficulties with the average lifestyle of our society. As “normal” people, impatience and frustration characterize our reaction to prolonged encounters with these special people. To wonder when the questions will stop or how long we will have to keep serving, when the return on our time seems so little. In our society of accomplishment, which values achievement and success and getting things done, our friends and family members with special needs seem to have little to contribute.
But therein lies the rub: according to the social structures of this world. To the ideals that society esteems, people with special needs tend to be unnecessary additions to our communities that only add burdens to life. But is this God’s view? As I have reflected on this question, God has used Faith to drive the gospel home through the heart of my works-righteousness saturated life. You see, it is true, Faith doesn’t have the ability to accomplish great acts of achievement. Faith is gifted in amazing ways, but none of them will create large amounts of economic value or social advancement. Her greatest skills include putting puzzles together, feeding pets, and cheerfully doing the laundry. The real lie, however, that I have succumbed to, is to think that I have the ability to be somebody worthwhile. I live my life thinking that if I work hard enough and am diligent in maximizing my abilities, that I can then justify my existence in life, and ultimately my worth before God.
When God looks at Faith and me, He doesn’t see any difference between us. He doesn’t see one person who is pretty good at life, who is valuable to society because of what he can do and the work he can produce, while seeing another person that isn’t able to measure up to the level of attainment necessary to prove her worth. God sees two people who can’t make it through life, who struggle with the simplest things and who can’t make themselves pleasing to Him through their own merit. Faith’s life has shown me that no one’s value is based on the works that he or she produces, but rather on the works that Christ has produced for us.
What does this mean? That God sees me as a special needs person! He looks at my best efforts, the things that I think are showing how valuable I am to Him and to the world and He says that they are merely a series of stumbling, bumbling, and mumbling actions, unable to make even the smallest contribution towards warranting my existence or God’s love for me. My need for forgiveness runs deeper than just for the wrong things I’ve done, but also includes my overestimating the value of every “good thing” that I’ve ever done in my life.
There’s only one solution for both Faith and me. The answer is not to get her up to the level of achievement of the average person according to the standards of this world, but rather to see that both of us have to completely rest in the only person who ever was able to live a significant life: Jesus Christ. To live any other way is out of accord with the gospel of free grace. God is so patient with me as I have to relearn this over and over again.
Only in this climate can Faith and I truly use our gifts for God’s kingdom. I’m amazed at how God has created her in a unique way to serve in ways that I sinfully consider insignificant. Faith sees every person as having value; she sees every relationship as worth spending time on. Faith is never too busy to say hello, to smile, or to help with something around the house. I rush through life trying to do as much as possible so that I can prove to God and those around me that I’m a somebody. I am too busy to love my neighbor because then I wouldn’t have enough time to love myself. Faith reminds what is really important in life…it is the simple things, loving God and loving my neighbor.
As Faith grows older, her life continues to point me to Christ. She will never be rid of Prader-Willi Syndrome; she will always feel the difficult effects of this lifelong condition. But just as in one day in 2001, everything changed, another day is coming when everything will change again. When Christ returns to this earth, He will change Faith’s body forever, ridding her of this fleshly one that so acutely feels the effects of the Fall, and will give her a new spiritual body that will be eternally perfect. I long for this day, when Faith will finally be free of pain and hardship forever. Come quickly Lord Jesus.
