When Jody and I first began to know each other, before he was my "significant other” and simply an “other”, he favored a certain phrase I'm sure you've heard: "It is what it is." It seems innocuous enough. A little stoic dose of reality for what life throws at you. You lock your keys in your car and have to call a locksmith: "it is what it is." You don't get the job in the final interview: "it is what it is." But when your child gets diagnosed with a syndrome, brain damage, global developmental delays, the gamut of special needs, suddenly "it is what it is" doesn't cut it. You can’t logic your way through the setbacks and that phrase issues a preemptive strike on emotion. By default, I am the emotional undercurrent to our family, the emoticon at the end of Jody’s sentences, and so I would not and could not hold up my end of the “it is what it is” banner.
But after some time and as Charlie won the hearts of all the therapists and doctors and teachers and aides, his diagnoses began to mean a little less to me, which made me react a little less to them. He cruised in his wheelchair and waved to humans, animals, and inanimate objects alike. He could have run for congress. Slowly, the things that made him different began to feel like a silver thread sewn into the fabric of him—something that made him shine brighter than anyone else. When life hit him at a certain angle, he shimmered.
It was around this time of peace, when I could look at his condition with a bit of objective curiosity, that I came across the "disability paradox." The basic principle is as follows: those with disabilities tend to seem as happy or happier than their non-disabled peers. They report an equal-to-or-greater-than quality of life.
They are blissfully ignorant, some might say, unaware of the complexity of the human interactions around them. The idea rankled me. Yes, Charlie was friendly. Yes, he did seem content with the life he had been given. But the “disability paradox” wasn’t any more appropriate than “it is what it is.” It implied a simplicity about Charlie that did not fit his personality, a too-small sweater coming up short at the wrists. Sure, Charlie has always been an overflowing abundance of exclamation points.
When Jesus spoke of becoming like children, He did not mean naïve or smaller or weaker. He meant trusting. He meant willing. He meant brave.
Jamie Sumner
However, I do not think this is because he is simple or one-dimensional or easily-pleased. I think it is because he is Charlie. It's true that he cannot walk without help or talk without help or eat without help. But his inner world is an explosion of activity, a backlit world of beautiful color. He might be different, but he is just as complex and intricate as the next person. So why would his satisfaction with his life need to be labeled a contradiction in order to be understood? Why the "paradox"?
In the Gospel of Matthew, Jesus continues to prepare the world for His resurrection and ascension. He's telling more and more parables, laying His philosophy down bit by bit, a series of puzzle pieces that will leave His followers with the complete picture after He is gone. If Sudoku is meant to keep you sharp in old age, Jesus' parables will keep you sharp unto infinity. Just as the disciples had ignorantly asked who was to blame when they came upon the man born blind, they ask in chapter 18, "Who, then, is the greatest in the kingdom of heaven?” (Matthew 18:1). They love a good pecking order. Like learning the rules in a new game, they want to understand where everyone will fit in the kingdom to come—who will be nouns and who will be Proper Nouns. For a group of individuals that gave up everything to lead a selfless life in the most essential form of communal living, they seem to circle back to this hierarchy a great deal. They are only human after all.
Jesus answers with the unexpected, as He always does. He summons a child from the crowd. Maybe he or she was upfront in a parent's lap or sitting on someone’s shoulders for a better view. I don't know a single kid under the age of ten who's an auditory learner. So, Jesus picks one, maybe the one who wasn't listening very well (there's always one). He or she must have been brave to come up front and stand in the middle of all the grown-ups. And over the head of this child, looking into the eyes of the “older and wiser,” Jesus says, "Truly I tell you, unless you turn and become like children, you will never enter the kingdom of heaven" (Matthew 18:3).
When Jesus spoke of becoming like children, He did not mean naïve or smaller or weaker. He meant trusting. He meant willing. He meant brave. It takes bravery to be the last in line, the farthest away from independent living, the one everyone listens to the least. This is the heart of the story: "Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven" (Matthew 18:4). This kind of faith is not any more of a paradox than my son’s happiness. It is the most natural thing in the world because happiness and faith come with trusting someone upon whom you are dependent. And dependence, when viewed as it should be, is a beautiful thing.
Excerpted with permission from Eat, Sleep, Save the World by Jamie Sumner. Copyright 2020, B&H Publishing Group.
Parenting is hard—for everyone. And it takes a lot of inner pep talk and prayer to be the kind of parent your child needs. Eat, Sleep, Save the World is the rallying voice for the parenting special needs community. It highlights the exceptional qualities God has gifted you with so that you can take care of your exceptional children. It is a celebration, a hallelujah, a high five for what you are doing right. And it offers peace in God for what you feel you lack.
With a mixture of humor, honesty, and hope, Jamie Sumner brings comfort to other parents like herself who need to hear that God has made them more than capable to raise their special kids.
With a mixture of humor, honesty, and hope, Jamie Sumner in Eat, Sleep, Save the World brings comfort to other parents like herself who need to hear that God has made them more than capable to raise their special kids.