Sabrina’s eyes are bright this morning. She does not quite smile, but looks me over, turns her head a bit to track my movement across the room. Three years ago – had I deserved such an honor – she might have skipped over to give me a hug. Not now. Sabrina does not skip.
It is different with Jacob, another child I know. He bursts into the room, into your heart, with a radiant smile and arms open wide. Jacob skips and, if you’re lucky, Jacob delivers a fierce little-boy hug, but Jacob does not hear. It is different, too, with Reilly who can do anything that other ten-year-old girls do except that, on a bad day, Reilly cannot breathe.
Well, back to work. Pete and I have come to Holland in an airplane on this stormy morning to take Sabrina and her parents on a journey. I first met Sabrina a few months ago when she needed to come home from a hospital in Minneapolis. It is always the same on the first trip; you meet this person, compare them to what you think is normal, try to understand what it is that they have lost. It was the same way with Jacob and Reilly.
When you see them again, it is a different question. Have they found a way to live within this new Normal, or are they just hanging on until the gale passes? After a few trips through this cycle you begin to wonder, what is normal?
Imagine this: You open your eyes and light appears. You think a certain thought and your hand moves smoothly to your face. Without trying, you detect sound waves, decode them into a message, compose a response and send back a sound of your own. You cannot explain why any of this works, but it does, and after a while, you come to think of these abilities, if you think of them at all, not as gifts but as personal possessions. They form part of the mysterious Normal, the foundation upon which we stand and rarely look beneath – until something changes.
It changed dramatically for Sabrina who, at three years old, seemed a normal little girl. Now, three years later, her arms and legs hang limp. She thinks the thought, but nothing moves. She hears the message and composes a response, but she cannot make the sound come out.
A while ago, something began to crack in my own family’s foundation. My mother began to forget small things, to repeat herself. Not long after, she could not find her way home in the car and once set off, on foot, to look for my father in a distant city. Now, aside from the occasional quip that echoes her forgotten nature, my mother sinks further and further into a new normal. Sometimes she recognizes my father, sometimes not. Nonetheless, he lays aside all that does not fit within the new normal – his work, his play, his rest – guards her stubbornly and at great expense. As she is transformed, he is transformed, too. He rises as she falls, grows stronger in his love for her as, it sometimes seems, there is less of her to love.
I see in Sabrina’s family, too, this rising, this commitment to gather up and protect all that remains. For what remains is Sabrina, who would be no more precious to them if she could walk or talk.
I often forget what is precious. I act as if work is precious, or flying, or a hundred other things, but then my son somehow appears on my lap and wants to go for a bike ride – a bike ride that in no way advances my personal objectives or reduces my insecurity about the future.
Big ideas usually come down to small choices. A little more work or this bike ride with my son? A day at the office or a trip with Sabrina?
Sometimes, it is choosing what is really more important. Sometimes, it is trusting that He who gives us life and breath will somehow enable us to pay the bills. Always, it is remembering that what I make through my own effort is so absurdly small when compared to what I have been given.
So Pete and I spend much of the day in an airplane, getting Sabrina and her parents back to the hospital. They are excited with her progress; her eyes really are brighter and the cock of her pretty little head more alert than they have seen in a long while. They think it is the feeding tube, of all things, that has helped. I shake my head. Imagine that; thankful for a feeding tube.
Or stranger still, imagine this; that it had not occurred to me until this moment to marvel that my body somehow transforms even a bag of vending machine potato chips into power which fuels thought and motion and a multitude of supporting systems that I cannot begin to understand.
Sabrina is thankful for a clumsy tube. I am unthankful for an elegant system which – because it is so elegant and reliable – I forget is there. Unthankful, sometimes, that a precious little boy wants me, of all people, to go with him for a bike ride.
I wish it were different with me, that I did not have these disabilities. But I am learning from Sabrina, from my Father and my son, from Jacob and Reilly and their loving families that a rich life is not about being normal. It’s about being thankful.
For who makes you different from anyone else? What do you have that you did not receive? And if you did receive it, why do you boast as though you did not?
I Corinthians 4:7