My friend Andrea is a prodigious athlete. She runs for speed as well as for endurance. She fenced in college (she’s a wizard with weapons), then took up competitive running long ago, and has since finished or placed in I cannot tell you how many biathlons and triathlons.
The gal frightens me.
As she does anyone who gets in front of her on the track, because – eh-hem, move over – this is one driven creature.
That she’s also a scientist frightens me, too. (We already know how I feel about things numerical, and I recall science requires a few numbers here and there, and so we’ll just move swiftly along from that topic so I don’t break out in isosceles-trapezoidal boils.)
But what gets my attention more than anything Andrea is or has done, more than her fencing jumpsuit or orange lycra shorts for her latest what-have-you-thalon or even her mad scientist lab coat, is the heavy cloak she wears as a mother.
She has three boys and one of them, her firstborn, Ethan, is severely handicapped.
Ethan suffered hypoxic brain injury at birth. This left him with cerebral palsy, epilepsy, severe developmental delay, no purposeful movement. He cannot form words, he cannot crawl, sit up straight or walk, he cannot care for himself in any way, he cannot see. He is ten years old but his developmental equivalency is measured in months. His unending medical needs make Andrea and her husband Chris’ home a battle zone with concourses of nurses and therapists trudging in and out both day and night.
Then there are those wars with school systems. The wars with insurance companies. The wars with the armies of medical professionals. The wars within Andrea’s own chest cavity. The list of assaults goes on.
My firstborn, on the other hand, was ill precisely three times in his whole 18-year-and-five-months of mortality. A few hours total of illness, I’d wager. Maybe twenty hours, tops. A mild allergic reaction to citrus juice. A normal inner ear infection. And of course that one time I gave him food poisoning with a bad batch of bolognese. All that night, my 12-year-old convulsed and heaved between polite color commentary, assuring me from his crouched position over the toilet that it was (barf) not my fault (buuuurrrrrlch) and that he (puke) would be okay for (whaaagh) basketball (hurl) tomorrow.
That, in a nutshell, is what my son knew of illness. That’s all I witnessed of my firstborn son’s conscious suffering.
In the time we’ve known each other, Andrea and I have exchanged notes on the nature of major loss. In these exchanges, I have never felt that she has pitted this grueling day-to-day loss of her son against another loss she does not know, the sudden death of my son. She has never even intimated there’s competition between the two, a sort of Grief Olympics, you might call it. And I try, I do, to give her and her stunningly beautiful Ethan the same respect. I hope she senses that. I readily admit to not knowing the air pressure of the kind of galaxy Andrea and her family inhabit.
But layer by exhausting layer, her story has given me the gift of beginning to understand something I did not understand five and a half years ago, at a time when I swore to heaven I wanted to experience Andrea’s galaxy firsthand.
It was that first night I stood in the ICU over the body of my robust, muscular, athletic but comatose son. That was the night I poured out my tears to my Father in Heaven and vowed that if He would let my child live – in any state whatsoever, just live – I would care faithfully for this child of mine. I would consecrate all I was and would ever be to caring for my boy as God would.
“Let me keep my son,” I wept and pled and begged and insisted. I picked a fingertip-deep hole in the naugahyde arm of the metal-legged chair, I remember, drilling the idea into Divinity’s head. “I can already see in my mind where we’ll set up his hospital bed in the Munich apartment. Right there. I know where I can find daily medical care. I’ll educate myself, I’ll suction his lungs, adjust his oxygen, do nothing else in life besides care for him, stay with him. Read him Goethe and play him Brahms and stroke his stoney limbs. God in heaven, don’t take him from us. We’ll all die. I need him. I’ll die. . .”
They were furious prayers. I get sweaty just writing them.
What was I asking for? I didn’t know then in my breathless desperation. Andrea has an idea. But I did not. In that moment, I couldn’t imagine anything beyond the cliff that we were standing on that had us dangling over the abyss. Had God granted those pleas, I don’t know what person I would be now, stroking the arms of whatever remained of my son, herding strangers in and out of my home, funneling every nanogram of energy and every last cent into sustaining a life that is disintegrating before my eyes anyway. I’ll tell you: I’m quite sure I wouldn’t be writing books. Or writing this blog you are reading right now. I would have no surplus anything for such an undertaking. I would maybe have to take up running really hard and really fast for the sole purpose of metabolizing the raging hurricane that bangs relentlessly in my thoracic cavity. Maybe I would become a triathlete. Maybe I would crop my hair to a snappy-sleek black Powerwoman ‘do.
And I would wield some real as well as some figurative swords. Maybe. But can I know? Can any of us know what we would do with someone else’s lot? Maybe instead of becoming stronger I would cave. Maybe my whole family would die and I would die, too. I would hope not, but really: how can I know?
Observing Andrea, I get a flimsy, fleeting glimpse of just a corner of only the slightest edge of an expansive world I was asking for that night in the ICU. And I marvel, thinking I wouldn’t make it.
But then I think, well. . . I ‘ve made it this far through something else. . .
And finally, I must digest the plain reality that my fate and my loss have been of another sort.
“Isn’t it odd?” Andrea wrote in a treasured email exchange, “You’re grieving the son you once had and lost. And I’m grieving the son I never had but am losing every day.”
And she will lose him. She knows that. Which makes the enormous effort in keeping him alive that much more – how can I describe this? – that much more godly, in my eyes. Andrea moves hour after hour after week after month after year along that crazy split path that reminds me of two side-by-side moving sidewalks, the kind you’ve stood on in airports – with one going quickly in this direction, and the other going quickly in the other direction – she straddles that impossibly schizophrenic and simultaneous divergence of both frantically sustaining and inevitably losing the life of this beloved, perfect son.
Now you tell me: is there any harder race than the isometric marathon of the soul?
So my friend Andrea, a weapon-wielding, race-running, warrior of a mother would be the last to say she’s in some competition about whose loss is worse. As if, with all that she and her family are dealing with, she has bandwidth for enlisting in some sort of Grief Olympics.
But she does have an Olympian’s spirit, which her oldest son, who coos like Chewbacca and sighs like the newest initiate to Mount Olympus, has inherited in full.