Goddess mug shot

The Goddess Speaks


Caring for Billy brings
its own kind of reward

IT'S BEEN 20 YEARS since my life was turned upside down, given a good hard shake, and was never again the same.

The "life-quake" was caused by the birth of my son, Billy, an occasion my family will be celebrating Thursday evening. But Billy won't be gobbling down the roast beef dinner like the rest of us.

You see, Billy can't really eat -- not stuff like roast beef or anything that has to be chewed. He gets most of his nutrition via a tube in his stomach. Yes, he gets to sample the soft foods like the mashed potatoes and brown gravy (his favorites), the ice cream and frosting on the cake. But he isn't able to swallow much of it.

He'll sit there, humming to himself and twirling the ribbon attached to a big balloon (another favorite), coming out of his own world occasionally to smile and giggle at the goings-on -- if we're lucky. Or he'll pull the tablecloth, and plunge his hand into the potatoes, if we're not.

You see, he can't hear or speak, so joining in the conversation is not how he entertains himself. (Don't worry, he'll get to do something fun before dinner.) So before he can do anything mischievous or gross, I eat fast before it happens, one eye always watching him.

Life with Billy involves the ability to anticipate problems and prepared for them. Frankly, he's a pain in the butt, but I love him.

BILLY IS pretty tiny for 20, at only 4 1/2 feet and 58 pounds. He was born with a double cleft lip and palate corrected by an operation that left noticeable scars, and his face is a bit lopsided. But I adore his face and can't help covering it with kisses every day.

People, mostly kids, often stare at him as if he's the most repulsive thing they've ever seen, while others immediately exclaim, "He's so cute!" It truly astounds me how beauty is a reflection of one's heart.

Raising a child who is autistic and severely handicapped is, to quote a philosopher whose name I can't recall, "like licking honey from a thorn." You have to try to glean the sweetness of life under the bitterest of circumstances without having the heart cut out of you, and somehow when you've managed this unlikely feat, the reward is all the more sweet.

What do I get out of it? His crooked little smile lights up my day, and he has an endearing charm that grabs my heart. His giggle is contagious -- except when I hear it at 3 a.m. accompanied by his bounding out of bed and turning on the lights. When he reveals how smart he is, we all take the time to marvel at it.

To handle the heartbreaks and frustrations, I've been forced to become resilient and resourceful, comparable to someone with the tenacity to survive in the wilderness. (But please don't put me to the test -- I hate camping.)

I used to feel like a failure because I hadn't achieved my goals. But one day I realized -- without getting any promotion, becoming a millionaire or doing whatever the world regards as being a success -- that I am a very important person, even if only to my son. If I were to die, he would suffer because no one would be there to love or care for him as I have.

There's an inspirational message that sums up my feelings. It goes something like this: In 100 years it won't matter what kind of car I drove, what kind of house I lived in or how much money I made. The only thing of lasting value will be that I was important in the life of my child.

Pat Gee is a reporter for the Honolulu Star-Bulletin.

The Goddess Speaks runs every Tuesday
and is a column by and about women, our strengths, weaknesses,
quirks and quandaries. If you have something to say, write it and
send it to: The Goddess Speaks, the Honolulu Star-Bulletin, P.O.
Box 3080, Honolulu, 96802, or send e-mail

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