All About Wonderboy

January 20, 2005 @ 5:37 pm | Filed under: ASL, Family Adventures, Hearing Loss, Special Needs Children, Wonderboy

He is 13 months old and has had his hearing aids for two months. His hearing loss, diagnosed last fall, came as a surprise to us—we spent his first nine months focused on various and sundry other medical issues. First it was the omphalocele, discovered immediately after birth: a small section of intestine had herniated into his umbilical cord. He was rushed to the university hospital, where our favorite surgeon in the world tucked his bowels back where they belonged and custom-stitched him a belly button. (It’s a beauty, too.)

Then came the string of new and alarming discoveries: seemed like half the departments in the hospital had something to say about our boy. Cardiology, genetics, neurology, neo-natal…plus a couple of others who were able to cross him off their lists, thank goodness. The next six months were an adventure of appointment-juggling, full of surprises. In March, a second surgery. In April, he was diagnosed with hypertonia (high muscle tone) and developmental delay. Wonderboy’s physical therapy became our new family pastime. His sisters are a big help with the homework.

An MRI in June showed specific types of brain abnormality but offered little insight as to what to expect in terms of future mobility. PT has worked wonders, but there is a long way to go. He’s a tough little guy, and his physical therapist is a gem–a gentle, patient soul with a wonderfully warm manner. Wonderboy loves her even if he doesn’t always love what she makes him do.

Just about the time we were getting a handle on the PT, we began to be concerned about his hearing. More tests, a surgery to insert tubes, yet more tests—and finally confirmation of what we already knew: he is hard of hearing.

Now that he has the hearing aids, he can hear everything we say to him. We’re teaching him how to make sense of it. Sign language helps, so we’ve all immersed ourselves in the study of ASL (American Sign Language) and I’m not sure which one of us loves it more. My shy Rose blooms when her hands can do the talking—she loves being able to tell me something without opening her mouth. Beanie is learning to fingerspell before she can read. And Jane is burning with an insatiable need to know WHY each specific sign is what it is.

The first time Wonderboy signed “Mommy” I thought my heart would burst. Now he says “Maaaa” and that’s just as magical. He enchants friends and neighbors by studying their faces when they speak, those big eyes serious and fascinated, a little smile quirking the corner of his mouth. And I think there can be no audience in the world more satisfying to sing to than a hard-of-hearing baby. His spellbound gaze says I’m the wonder, as if I’ve somehow invented this marvelous thing called music all by myself.

I think the real wonder is how God works it out: the child with hearing loss teaches me how to listen; the one who can’t talk yet has the most profound things to say.

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Tags: ASL, Hearing Loss, sign language

Life Is a Mixed Metaphor

January 20, 2005 @ 1:36 pm | Filed under: Who We Are

“You have so much on your plate!”

“I don’t know how you juggle it all.”

“You really have your hands full.”

This is what I’m always hearing from people, variations on the theme. Either I have too many balls in the air or too much food on my plate, or maybe it’s PLATES I’m supposed to be juggling instead of balls, and I guess in that case any amount of food would be too much. And it’s true, I’ve had plenty of days when it seems like the metaphorical spaghetti is raining down upon my head. Especially this past year, since the baby was born.

But I’m of the mind that a little pasta in the hair can be a good thing, metaphorically speaking.

Full hands are a blessing. Juggling can be exciting. A plate heaped with food is generally considered something to be thankful for.

And oh boy am I thankful. Sometimes I’m dizzy with thanks. Other times I’m just dizzy—life whirls by so quickly. What’s on the spinning plates is a blur. So I thought I’d write about what’s on each dish, the whole savory smorgasbord.

I wonder how my children will feel, later, about having been described as dinner. I won’t beat an already battered metaphor to death by attempting to compare them to specific foods. Enough already! The whole point is that real life resists being squeezed into cliche. I’ll scrap the whole thing and just say, yes, my hands are full (aren’t everyone’s? full of something or other?) and I’m so glad and here is what they’re holding:

The children. These days the girls are calling themselves Jane, Rose, and Beanie. Well actually it’s Jane and Rose calling the youngest one Beanie, but she answers to it. And then there’s the baby, whom we affectionately refer to as Wonderboy. Their ages are 9, 6, almost 4, and 13 months. They are homeschooled. So are we, Scott and I. (Are, present tense, not were. Education never ends…)

Scott. I’m tempted to annoy him by writing something mushy, but I’m supposed to be working right now so I think I won’t push my luck. Heh.

Work, oh yes, there’s that. I write. Scott writes. Both of us, here at home, in this messy office with my photocopies of 18th-century Edinburgh all over the wall and his comic-book-hero statues staring at us from atop the shelves. I’ve got a big deadline and I’m working doubletime right now. Scott’s got the kids outside running laps around the house to keep warm. I should shut up and get back to work right this minute.

Just wanted to stop juggling a minute and step back to admire the plates soaring through the air.

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