It's late afternoon. My kids and I are jostling up the freeway in our minivan to hit a bookstore before dinner. I've already spent the day reading them stories, teaching them to count and cleaning up their sticky little snacks. So it's time for a quick check-in with the grown-up world: 10 minutes of NPR while they eat Goldfish in the back seat.
I forget they are listening. And then, "Hey mom, what does that mean? Reproductive rights?"
It's code for abortion. So I tell them that. The conversation that follows is a good one. Even though they are small, they can handle it. They must handle it, because this is the world they are living in. If I don't tell them what I think, my silence will equal assent. So we are doing this now, swerving around construction cones and looking for the turn-off. My brand of apologetics.
How should we approach this difficult topic, when they are so young?
Wednesday, December 28, 2016
When I was little, the deepest longing of my heart was to see my brother walk. At night I’d lie on my back and try to think back before that invisible moment in the womb when things changed. And then I’d think back even farther. Back to my dad being a kid, back to dinosaurs, back to the Earth covered in water, and the Spirit of God hovering over. And I’d whimper a little child’s version of Martha's prayer: “Lord, if you had been there… but I know God will give you whatever you ask…” (John 11:21).
Once when I was about 8 a lady at church told me if I had enough faith God would heal my brother. Was that what was holding God back, I wondered? My pathetic faith? Around that time I asked my dad if he thought God could heal Dustin. His answer was calm, kind, and final. “Yes, but I don’t think he will.”
From that point on, I began to make an awkward peace with disability. Nothing less than heaven will make this right, but it will be made right, because of heaven. It’s a truth I must repeat each day, over the stove when my mind wanders. With time, it has hardened into something useful I can depend on. Christ in you, the hope of glory. (Colossians 1:27).
In college I began to fear this need for repetition was a fool’s game, a sad attempt to steel myself that showed my faith was misplaced. I gave in to sorrow there for a while and had a bumpy road. But I’ve come to understand that grief demands we learn by repetition. And like most areas of study, if your repetition is correct it will eventually give way to mastery.
This is the pedagogy of Jesus in John 9. Think what monotony the blind man experienced, before he met Jesus. Every morning when others saw the sun, he did not. All day long while others worked, he begged, reaching out again and again until it was night – and he did not see the stars. I can only wonder how often his heart cried out for a miracle. Had he too made peace with disability?
Maybe he had, but Jesus had not. Jesus gave the man sight, and a new lesson to repeat. I am the man who used to sit and beg. (v. 9). And then I could see. (v. 11). Jesus put mud on my eyes and now I see. (v. 15). I was blind but now I see. (v. 25). Jesus opened my eyes. (v. 30). In time he gained the greater truth: none less than Messiah can give life, but you will have life, because of Messiah. (verse 38).
It’s been 30-plus years of repetition for me. Where grief once waged a war, I’ve gained a tiny fortress. So if I have to fight a hundred times a day to keep it, let me keep on repeating: Christ in you, the hope of glory. Because the day is coming when I will not live by faith, but by sight. (2 Corinthians 5:2). And if I must keep on repeating until then, it will be worth it.
Friday, May 6, 2016
Let me introduce you to my personal crap detector. He's a 35-year-old man with Cerebral Palsy. I grew up with him, five years apart in age and basically on par in sarcasm. My brother's physical appearance can be off-putting, if you're not used to the trappings of severe physical disability. If he senses you're trying, he will help you out by flashing his gigantic grin. If he senses you're uptight, he will flash you "the Hairy Eyeball," which basically consists of clamping his lips together and rolling his eyes back in his head. Then you feel like a jerk for being uncomfortable, even though he's purposefully contributing to your sorry state. His assessment is instant and infallible. Many a cute guy bearing mix tapes and youth pastor bearing Silly String have have been bested by the Hairy Eyeball. One boyfriend passed immediately, overcoming the fear of meeting a person who can't speak by the power of an earnest heart and natural propensity for doing all the talking. They are brothers now.
Growing up, we got a lot of laughs out of the Dustin Test. But now I'm learning that the test was philosophical too. Just like new friends, the ideas we encounter must be tested to see if they'll prove false. Yes, we can use our logic and our knowledge of the world to filter out some bad ones. But some others require a road test. If put to reality they simply don't work, then we know their attraction is folly. This is why Jesus told us that merely hearing His word is like building a house on sand, but actually doing it gives your house a firm foundation. If you want to know the truth of the Bible, go on and test it out.
When I hear, "I choose to be blessed!" or, "Suffering is a state of mind," I always want to say, "Tell it to my brother." So many of our philosophies just don't ring true in the face of hard realities. I don't dwell on this aspect a lot, but guess what: it's nuts to have a prognosis that you'll never walk, never talk, and never escape daily physical pain. It's a lot of mental work to accept that it's for real, and won't be overcome in this lifetime. The ideas, and friends, that I adopt must be ones that pass for this kind of circumstance. This test weeds out a lot of crap, and a few simple truths remain. Does your worldview work this way?
Saturday, May 28, 2011
|Me & My Dustin.|
I’m often asked what it was like for me when Dustin was born. I'm sure that it was a big deal (my therapist has told me so). But, honestly? It kind of also wasn't. I was 5. We lived in a small Midwestern town. There were Fireman’s Parades and the public pool had a gravel lot. “Bette Davis Eyes” was always playing and my greatest desire was to get the KISS Colorforms Set (denied). So there you have it, the early '80's.
This was way before ultrasounds and amnio. I don’t think anyone knew he’d be a boy, much less a boy with very significant brain damage and a stomach malformation that would critically endanger his life. There were emergencies and surgeries, a move to California. An arsenal of tragic prognoses: Dustin will die, Dustin won’t walk, Dustin won't talk. Dustin won’t recognize you, to operate would waste space. Warnings of divorce, urgings to institutionalize. The exact words “let nature take it’s course.” A spooky oracle concerning dysfunctional siblings. How my parents, mid-20′s, endured this I don’t know except to say that the love of a parent (and the grace of God) can really take your breath away.
But if that was the storm, Dustin was the eye. Adorable, kissable, dressable, huggable, squishy and naked. So small and soft. In his sister's medical opinion? Perfect. I remember he cried a lot and I had enormous satisfaction in thinking I was the only one who could soothe him. I rocked him on a pillow, singing personalized versions of oldies’ tunes. I put caterpillars on his tummy and propped up toys for him to stare at. I remember feeling confident and proud. I see my nieces now with my son, and I know their sense of ownership. I fully considered Dustin to be MINE.
People ask me about these memories because they think bringing a disabled child into their family might be a horrible burden on his siblings. Ignorant people with degrees have told them so. They look at his sister and think, “poor thing, she’ll be neglected, she’ll be so sad.” They don’t consider that her brother’s weakness might make him all the more loveable, his accomplishments all the more worthy and his life all the more special. I thank God that my parents made a choice to shelter me from prejudice, but not from disability. I pray more parents will do the same.