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Father's Courage Masks His Torment

November 24, 1986|RICH SMITH | Smith lives in Los Angeles

My wife and I are having a tiff. One of those woman-of-the-'80s-versus- macho- mentality-of-the-'50s imbroglios.

In her bitterness, she has accused me of being intractable, anachronistic and utterly blind to reality.

I suppose I am. But it's for her own good.

I say that because, right now, my tough-guy posturing is all that stands between her and a bottomless pit of grief.

At the vortex of that maelstrom is our youngest daughter, 2-year-old Shannon, who lies near death in a San Diego hospital--isolated by a three-hour drive from our home in Los Angeles.

Shannon is extensively brain-damaged, breathes with the aid of a respirator, suffers sudden and dangerous accelerations of her heart, is fed through a rubber tube in her stomach, requires insulin and has angelic blue eyes that can focus upon nothing.

Shannon is afflicted with a metabolic disease so exotic the medical world doesn't even have a name for it yet. However, Shannon's doctors say that it is attacking her vital organs by somehow causing her body to produce corrosively high concentrations of lactic acid.

It's a genetic defect, rare enough that researchers estimate the chances of two people with the lethal genes finding each other and mating to be about one in a billion. But once they do mate, the odds of producing a child like Shannon are one in four.

Shannon's disease had been held at bay since last Thanksgiving through a combination of diet, powerful medications and luck.

When luck ran out on Aug. 22, Shannon stopped breathing.

Her doctors at UC San Diego Medical Center--where she was undergoing another seemingly endless round of testing at the time--quickly resuscitated her but were powerless to prevent her from lapsing into a near-coma.

UC San Diego is one of only a handful of facilities in the nation with specialists in metabolic disorders, yet there isn't a physician there who can offer a prognosis for Shannon's recovery.

She might die, or she might leap up and start dancing on the bed, or she might remain a half-sleeping beauty forever. The experts plainly don't know.

It is this horrific new uncertainty that has shattered my wife. Until now, she was a defiant spirit who steadfastly refused to accept doctors' pronouncements of doom, such as those issued in 1984 in Los Angeles where pediatricians predicted that Shannon would die before reaching her first birthday.

Determined to fight for the life of her child, my wife spent months living in hospitals, seeking out specialists in every field to puzzle over Shannon's case. She even mastered a grueling regimen of home care for Shannon that has made my wife the envy of professional nurses everywhere.

But now, she is feeling trapped on a Magic Mountain-class emotional roller coaster--and she wants desperately for the ride to stop.

Little does she realize that I'm stuck on the same roller coaster with her and just as convulsed inside.

Honestly, I'd love nothing more than to confess that I share her intense, wrenching agony. I want to tell her that I, too, fret that God won't come through for us as he has before, that perhaps our fervent prayers for one last, grand-slam miracle will go ignored.

But, to cave in to my heart's desire and weep as my wife weeps would only exacerbate her anxiety.

What she really needs is a revived sense that our lives--with or without Shannon--can and will be rich and fulfilling once more. Even if this sense is purely illusory, it nevertheless can serve as a potent salve for her lacerated soul.

Consequently, I must pretend that I believe with all my heart that there is yet a light at our tunnel's end.

Unfortunately, I find that putting on a convincing display of courage under these circumstances entails much intricate masking of my own torment.

Sure, I've read all the articles expounding the risk to men who bottle up their hurt and walk around like dignitaries from the planet Vulcan. But Phil Donahue will just have to wait.

For my wife's sake, I simply can't afford to act the part of a wimp. And, until she regains her mental edge in this crisis, false bravado will continue to be my stock-in-trade as a husband.

I must be doing a good job of fooling my wife, though: Just last night she threw a bottle and cursed me for not flinching over the mounting bad news from San Diego.

I hate deceiving her this way, but I should learn not to feel guilty. In fact, I really should view my conduct as an investment in the future.

Namely, mine.

For soon, I fear, the roller coaster will dip and careen too wildly, causing my strongman facade to buck loose.

I can only hope that by then the effort to bolster my wife will have paid off. Because at that point, I'll be counting on her to rescue me from the abyss.

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