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The Goddess Speaks Pat Gee |
Gifts reside in tasks
we take for grantedChristmas came early for me this year. Dec. 7 to be exact. That was the day it suddenly hit me that my 21-year-old son could finally eat like a normal person, through his mouth, instead of only being fed through a tube in his stomach. Eagerly, consistently, with nice, clean swallows. Nothing was coming back out.
I never thought I would see the day.
I apologize if this is "too much (aka gross) information," but I once vowed that I would celebrate the news of his eating by running a huge ad in the paper, proclaiming in block letters: "Billy can EAT!"
It doesn't seem as important to broadcast it as it is to look back on how an event that meant so much to us became more significant because of the way it happened. It sort of crept up on us, with little fanfare and few milestones.
Billy was born with a double cleft lip and palate -- two openings in the roof of his mouth and upper lip, among other defects too complicated to mention here. Although such surgery is usually successful, the closing of his palate went awry. It could not be re-attempted without putting him at serious risk, leaving him with a hole in the roof of his mouth to this day.
But that wasn't the worst of it. He lost his sucking and swallowing instincts the first few months of his life when feeding him by mouth was set aside to deal with more critical problems.
My most fervent desire was that he would be able to eat normally, and I prayed several times a day that I would receive this most precious gift for Christmas the year he was born. I thought Christmas would be a good day for this wish to come true because, historically, it has been a blessed day for miracles, for the highest of hopes to be rewarded -- whether it be a poverty-stricken family receiving new warm clothes, a phone call of forgiveness and reconciliation, or the birth of a Savior.
Christmas would also be the conclusion of nine months in the life of a severely handicapped baby who didn't yet possess one of the most basic abilities or pleasures in life -- eating. Many of the special events in our lives are commemorated with food and drink, and Billy couldn't swallow a bite. I felt he was pitifully deprived.
WELL, HIS FIRST Christmas came and went, and there was no miracle. Along with the questioning of God's will came the sinking realization that I would just have to plug away. There would be no easy way out.
How do you teach someone to swallow? Billy didn't have any understanding of language, even sign language, then. I couldn't demonstrate by making him watch me, as the neurological coordination needed is not visible.
I learned what real frustration was by digesting the meaning of the adage: You can lead a horse to water, but you can't make him drink.
I felt like giving up after our feeding "practice" sessions ended up with both of us in tears. I would approach these sessions with dread and anxiety, steeling myself against the inevitable disappointment. Billy felt the tension, which didn't put him in a mood to try.
I felt guilty, especially when "friends" said things like, "If he were my kid, he'd be eating."
A therapist recommended "tactile stimulation" in and around his mouth several times a day so he wouldn't be so wary of food in his mouth. "In a month, he should be eating," she predicted. I knew she was wrong as soon as she said it.
I finally resigned myself to the conclusion that if I couldn't make him drink the water, it was still my responsibility to lead him there. When I took the pressure off myself to "succeed," I could continue spoon-feeding Billy without inner turmoil or putting pressure on him, too.
That was a minor miracle in itself, this change of attitude. In the end, the major miracle came about when I made myself put aside my expectations to "just do it," as the Nike commercial tells us.
Year by year, like the steady dripping of water that can split a stone in half, Billy learned how to manipulate and enjoy pureed foods -- he still can't chew -- and swallow without choking or spitting out most of it. He started with a tablespoon of food, most of which he didn't eat, and now he can eat a total of about three-fourths cup at one sitting.
He still relies on the tube for his nutrition, but one day he may be able to eat enough so it can be removed.
Now, for my next Christmas present, I wish he could talk ...
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Pat Gee is a reporter for the Star-Bulletin.
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