Category Archives: Family Adventures

He’s Getting Better, I’m Glad to Say

Scott threw his back out, unfortunate man, so it has not been a week for writing. It has been a week for trotting up and down the stairs (me), jumping on the sofa (Bean), learning the sign for “up” (Wonderboy), making a ham sandwich All By Herself (Rose), and devouring the new Brian Jacques novel (Jane). A busy week, a getting-into-the-spirit-of-Lent week.

Yesterday was Ash Wednesday. After Mass, the kids and I stopped to pick up a cheese pizza. Scott was home in bed, flat on his back in quiet agony. I paid the cashier and handed the baby to Jane so I could carry the pizza. Wonderboy dove into her arms, grinning his many-toothed grin. Behind us in line was an elderly couple; the ashes on their foreheads told me they too had probably just come from Mass. “Oh, how sweet,” the woman said, watching Wonderboy smush his face against Kate’s cheek. It may have been an attempt at a kiss. More likely he was angling for a place to try out those teeth. Because sometimes love bites.

As Scott found out, swinging Beanie around on her birthday. She loved it, but it came back to bite him. Poor Daddy. He’s back on his feet today, for short periods. Which is why I’m off mine right now, and back (at last) in this chair.

Giving Thanks

In March of 1997, Jane was 21 months old. I took her to a friend’s birthday party in Prospect Park. It was my first time driving in Brooklyn. I remember zooming around a curve on the Brooklyn-Queens Expressway and seeing downtown Manhattan across the river, and feeling so empowered—if I could handle New York City highway traffic, I could handle anything. Jane piped up from the back seat, "Bus!" and I was so excited because she was rather a late talker and had only a handful of words at that point.

The next day, the birthday boy’s mother called to warn me that Tommy had awakened with a stomach virus that morning. Uh-oh. Every kid at the party came down with a really nasty flu—except Jane. She was legendary for her vigorous good health.

A week later, Jane and I flew down to North Carolina on a house-hunting mission. Scott was going to apply to grad school at UNC-G. Our plan was to move down in May and spend the summer freelancing before Scott started classes. Jane and I tooled all around the Greensboro area, and to my utter delight I found a cute little rental house—a former train depot, really—on a farm just outside the city limits. $500 a month, access to the whole farm including the sheep, the donkey, and the duck pond, and there was another family on the property with a little girl whom they too intended to homeschool. Seemed too good to be true. I returned triumphantly to NY and told Scott I’d found the perfect place.

A few days later, I was changing Jane’s diaper and noticed a surprising number of bruises on her legs. I wasn’t particularly worried—she was an active kid, a big climber and jumper, and we’d been at the playground all morning. Still, I decided to run it by the doctor. Unfortunately it was after office hours, so I’d have to wait until the morning.

That night Scott and I had an argument about when he should give notice at work. I was pushing for a slightly earlier date; I was eager to get down to NC and settle in at the Depot House. (It even had a name! I’ve always wanted to live in a house with a name.) Scott thought we should hang in for one more pay period before making the big move. We both went to bed upset, with Jane zonked beside us, her fair skin luminous in the moonlight. I woke in the early dawn, those bruises nagging at my mind. I snuck out of bed without waking Scott and Jane and dug a medical reference book out of the office closet. Bruising: check for petechiae, it said—little red dots on the skin—more than a dozen means bad news.

I crept back into the bedroom and raised the blind enough to let in light from the streetlamp. I remember the cold lump of fear in my stomach. There were more than twelve red dots on one arm alone. It was Saturday, March 22nd, and life as we knew it was over.

The pediatrician had office hours that morning. He took one look at Jane and sent us to the hospital for a blood test. Ten hours later we found ourselves in the PICU watching a nurse hook up machines that would remove Jane’s blood from her body and replace it with someone else’s blood. When Scott called his mother to tell her Jane had leukemia, she thought he was joking at first. He assured her that he would never joke about something like this. It defied belief, but it was real.

By the end of her first week of chemo, Jane had picked up a whole bunch of new words, like "blue IV" and "med-o-tec-tate" (methotrexate). And to think I’d been impressed with "bus"! Day 8 was Easter Sunday, and she hunted eggs in her hospital room with Scott maneuvering her iv pole around the bed. We thanked our lucky stars that he hadn’t quit his job yet—his company had great health insurance. I wrote a note to the owner of the Depot House, explaining that we wouldn’t be renting after all. Six months of inpatient, high-dose chemo stretched to almost nine months, because of low blood counts and complications. Jane knew more about platelets and white cells at age 2 than I did at 20. We learned how to give injections and push meds through her central line catheter. We watched hundreds of hours of Blues Clues and read picture books until they were stacked as high as the bed.

She finished the last round of high-dose chemo on Thanksgiving Day of 1997. We ate Boston Market turkey and stuffing in the hospital playroom while her meds finished running. There were two more years of low-dose chemo to go, but we expected to spend most of that period as out-patients. When we got home that night—home, where we hadn’t spent more than ten days in a row since March—it was late, a cold, clear night, with as many stars as a New York City sky can muster. I remember thinking I couldn’t imagine ever being more thankful for anything than I was to be carrying that little girl up the stairs to our apartment that night.

I was wrong. Today I watched Jane feeding Wonderboy a jar of baby food. He thought it was hilarious to have his big sister be the one feeding him, and he could hardly eat for laughing—big belly laughs that made the other kids crack up, and then the sound of their laughter, which he can hear clearly now with the hearing aids in, made him guffaw all the harder. I stood frozen in the kitchen, holding my breath as if they were a flock of rare birds who might fly away if I moved. Beanie’s curls bounce when she laughs. Rose laughs mostly with her big brown eyes. Jane is like a poster child for joy. It bubbles out of her and spills over to everyone around.

There’s a little part of me that is still leaning over the bed in that crowded Queens apartment, counting tiny red dots on Jane’s skin, slowly awaking to the fact that we had far more important things to worry about than what day Scott should give notice at his job. It’s the part of me that knows, now, never to take a minute of this for granted—to give thanks to God every hour of every day for these amazing treasures who have been entrusted to my care, and for the guy who gives his all in helping me take care of them. They are miracles, all of them. Especially that golden girl beaming at her little brother as she lifts the spoon to his laughing mouth.

All About 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.