An Uncomplicated Life (7 page)

“Okay, sweets,” I’d say. With my thumbs, I’d rub the palms of Jillian’s hands and the soles of her feet. The doctors said touching was very important early on; it stimulated the nerves. Also, kids with Down syndrome can have an aversion to touch. They recommended the rubbing to remedy that. I’d have done it anyway. It felt good. I needed that. Therapy for the therapist.

Working her tiny hands and feet came with a peace all its own. My thumb practically covered Jillian’s palm. It was maybe a half shoe-size smaller than the sole of her foot. Pressing lightly made Jillian happy. Her eyes assumed an expressive
softness. Early on, we understood that Jillian would be what the doctors and textbooks call “cognitively delayed.” We also realized at about the same time there would be nothing delayed about her emotions. Jillian could love and be loved.

I’ve thought about that often over the years. What if Jillian had been born severely autistic? If she had been limited in her ability to show us affection, how much harder would our lives have been? We immediately related to Jillian on a basic human level. Her personality helped us deal with that. We rubbed her hands and feet; she stared back, enthralled. The transaction made all of us happy. We all fell in love. What if that hadn’t happened?

Jillian was “floppy” as well. That’s a dismissive way of saying she had low muscle tone. The physical therapists attacked that. Our at-home regimen was simply to work Jillian’s arms and legs up and down, as if we were maneuvering the appendages of a Barbie doll. Jillian wasn’t much bigger than a Barbie doll, so it made sense.

We’d brush her, too. We had a small, soft-bristled brush, the kind you might use in the shower. Three times a day, we brushed Jillian’s skin, all over. She liked that. “Aoooh,” she said. If I found myself snagged in the weeds of the column and in need of something to take my mind off it, I’d come down from my office in the spare bedroom to do the rubbing and the brushing.

Trying to be topical and entertaining in print four or five days a week isn’t always easy. On the days when the words are graceful and the subject compelling, it can be like stealing money. On the other days, it’s like putting your brain in a vise. I’d start swinging and missing, and I’d want to kill my laptop. Instead I’d walk downstairs and treat myself to giving Jillian a
massage. It might not remove the writer’s clamp, but at least I wasn’t breaking anything.

FOR ME, MUCH OF
what’s been written by parents of children with Down syndrome takes on a pitying and self-absorbed tone. What’s going to happen to us? Why did this happen to me? This isn’t the child I wanted. My Book about My Syndrome.

Guilt is common. Guilt for being older, when the risks are greater for having a child with a disability. Guilt for feeling sad about having a baby not seen as perfect. Guilt for lamenting the child you didn’t have, and the remorse you feel because of it.

Kerry and I had no guilt or remorse. We did nothing wrong. A child is born, and she’s perfect except she has an extra chromosome. We do what we can, the best we can. We take the situation on our terms. Guilt wasn’t in the playbook.

Others who have written on the subject express a need for forgiveness. As if they have brought into the world an unsatisfactory human being.

Kerry and I didn’t need forgiveness. We didn’t expect it. We didn’t have time to think about it. There was no need to “forgive” Jillian for who she was. It would have detracted from who she could become.

That said, when the calamities of the day subsided and the house turned inescapably still, we were sad. We allowed ourselves that. Kerry sometimes cried during her nightly bath, occasionally wondering if our burden would ever feel light. “I don’t know if I can care for her” she said one night.

She could, of course. She has, magnificently. But in the
footlights of the moment, sometimes it’s hard to dance.

The bond with your child is thicker when she isn’t perfect. Everything exaggerates. Senses, awareness, caring. Slights, perceived and real. Your emotions are sensitive to the touch. In those first few weeks and months, we kept moving because we didn’t know what would happen if we stopped. Fairly quickly, Kerry and I realized Jillian wasn’t the only one who needed therapy.

WE NEEDED SOMETHING BEYOND
the perpetual motion and striving. An affirmation, some sort of intimate reassurance that, truly, everything would be all right. For me, it came with a dance.

At the end of each day of that first year, I curled my right forearm beneath Jillian’s bottom. The fingers of my left hand cupped the back of her head, which at that point wasn’t much bigger than a softball. Her arms hung on my shoulders, like wisteria on a plantation oak. Her head fit like a violin between the top of my shoulder and the base of my jaw. I cued a version of the song “Goodnight, My Love” that Los Lobos had recorded for the soundtrack to the movie
La Bamba
.

“May I have this dance, my lady?” I asked Jillian.

“Ah-oooh.”

And off we went. We orbited the small space of the living room, weightless and silent, but for the breathing. I sang to her:

Goodnight, my love;
Pleasant dreams, sleep tonight my love;
May tomorrow be sunny and bright.

Father and daughter, old and frightened, needy and new, living in the moment, dancing around the room. It was the best we could do.

I was looking for something beyond perpetual motion to help me negotiate the days. I spent a few days after Jillian’s birth damning God to hell. A week later, I was back in church. It didn’t take me long to stop seeing Jillian’s birth as a tragic roll of the chromosomal dice and start seeing it as a lifelong love affair. I still required an emotional brace, though. I needed Jillian to tell me everything would be okay. I needed her presence at my own salvation. She would have to help me through.

May tomorrow be sunny and bright.

Infants need that closeness. It simulates the womb they just left. Doctors tell you to keep them wrapped tightly in the days after birth. Blanket or arms—either will do. I preferred arms. Because deep down, this part wasn’t about Jillian at all.

If you should awake, in the still of the night
Please, have no fear
I’ll be there, you know I care
Please give your love to me.

I didn’t
want
to hold Jillian; I
needed
to hold her. My sadness was large. My need to protect against it was overwhelming. So I hugged for dear life, just to feel good about something. If I hugged Jillian hard enough, maybe the Down syndrome would go away. Please give your love to me. At the end of each
day, my daughter performed therapy on me. She danced with me, around the room.

All we can do is all we can do. We aren’t remarkable, Kerry and I. We lined up the mantras all in a row, like well-trained soldiers, and they did our bidding. Trails will be blazed, moons will be jumped. Jillian will decide who she is, as much as humanly possible. All that will happen, you will see.

First, though, we danced.

I held Jillian in my arms and danced a crescent around the room. The space filled with the light from a starry sky as we circled gently around the days of our lives. What is not possible?

May tomorrow be sunny and bright.

And then she almost died.

CHAPTER 5

Dying to Breathe

If children have the ability to ignore all odds and
percentages, then maybe we can all learn from them.
When you think about it, what other choice is there
but to hope? We have two options, medically and
emotionally: Give up, or fight like hell.
—
LANCE ARMSTRONG

J
illian was five weeks old when she returned to the hospital, literally dying to breathe.

I can’t begin to explain what it is like to see a 6-pound, 15-ounce child diminish before your eyes. Words have not been made to bridge the gap between standard-issue fear and outright terror. We spent the first five weeks of Jillian’s life worrying about Down syndrome. Suddenly, Down syndrome was the least of our concerns.

She had been having trouble breathing, which isn’t uncommon for babies with Down syndrome. Their lungs are often
slow to develop, and their nasal passages are small. We first thought she had a cold that, with help from doctors, wouldn’t last too long.

Quickly we realized the problem was that Jillian was not equipped to fight the virus that was creating a mucus that stuck like chewing gum to her impossibly small lungs. The textbook definition of bronchiolitis is “a virus [that] enters your baby’s respiratory system and causes the bronchioles, the smallest airways in the lungs, to become swollen and irritated. Mucus collects in the bronchioles and interferes with the flow of air through the lungs.”

When a child is deeply ill, the world constricts and becomes a very simple place, settled by fear and defined by the four walls of a hospital room. Life is a narrow tunnel in which there are no choices, no options, no decisions to be made. It’s only you, the tunnel and your child.

Jillian lay small in her hospital crib at the center of a nest of tubes. She was hooked up to machines that hydrated her, monitored her heart rate and the level of oxygen in her blood. Tubes ran into her chest and abdomen. She had an oxygen monitor attached to her tiny index finger. It was metal and glowed red. Antibiotics dripped into her body. Wires that were held in place by tiny, circular Band-Aids ran from her chest to a monitor on the wall.

She didn’t know what was going on. She had no idea there was a chance that, if she didn’t respond to the aerosol treatments and if she kept losing weight, she’d be put on a ventilator, and that could cause brain damage.

We wore masks in the room even though we really didn’t
want to. We didn’t want Jillian to be scared. When Kelly came to visit his little sister, he remained in the hall, waving at her from the window.

The monitors beeped and buzzed. Aural terror. The machine that measured the oxygen concentration in Jillian’s blood was especially horrific. It had a habit of beeping several times an hour, usually after Jillian had shifted in her crib and moved the monitor wires. Each time, a nurse would come in, shut it off and tell us not to worry.

Kerry got the message. After a day or so, she calmly told a nurse that the “stupid oxygen machine” was going off again.

I wasn’t able to do that. I couldn’t rein in my fear. Every time the oxygen machine beeped, I reacted as if I’d been stabbed. It was the soundtrack of my despair. I wondered if it would ever stop. I began to see the infernal beeping machine as a metaphor for the rest of our lives.

We’d been doing okay, coping. The therapies were starting, Jillian was on a schedule of eating, napping, dancing with me and going to bed. Kelly was in preschool. A calming normalcy had returned. After a few months, we wanted nothing more than for the world to stop spinning so fast.

Kerry kept detailed notes during those first several weeks, handwritten in pencil in a short, spiral notebook. The jottings helped her keep track of what the whir of doctors and therapists were saying. They also slowed down the world. As such, they were therapy, too:

10/31, Weight, 6 pounds, 6 ounces
9:30: Dr. Perez, echocardiogram at Children’s Hospital
1:00: Dr. DeBlasis, two-week checkup, PKV retest
EKG, Dr. Schwartz. Right side of the heart apparently enlarged. Sonogram needed, to see if opening between right and left side has closed. Small hole between chambers should close by itself. Re-exam in 3 months.

I took Jillian to the 1:00 p.m. appointment with Dr. Nancy DeBlasis, Jillian’s pediatrician. I was armed with Kerry’s questions:

Why do there seem to be soft spots all over Jillian’s head?

What type of Down syndrome does she have?

Are we feeding her the right amount?

Why does one eye seem to be lazy?

Dr. DeBlasis offered reassurance. She was sure the soft spots would close. Jillian has trisomy 21, the most common form of Down syndrome. Jillian was eating properly. We were told to feed her formula every three hours, four ounces at a time. She should gain one ounce a day. The lazy eye was no cause for alarm.

The doctor noted that Jillian had a small umbilical hernia that should disappear by age five.

She asked that we bring Jillian back in a week, and Kerry’s hieroglyphics kept us straight about each appointment.

11/7, Dr. DeBlasis: Weight, 6 pounds, 12 ounces
Good muscle tone
Weight gain OK. Check again in two weeks
Put silver nitrate on belly button to cauterize it. (Not completely closed yet.) Check for any oozing to indicate it’s still not closed.
See back in two weeks.

We ordered our days around these notes. They were the blueprint for how we’d begin the lifetime task of building the best Jillian. New, enthusiastic parents want to do everything right. The totally dependent life they’ve created deserves nothing less.

It was the same with Jillian, only more so because of an extra chromosome. We fretted over feedings and naps and having a consistent bedtime. We kept small objects out of the crib, we laid Jillian on her back when it was time for her to sleep. We had the baby monitor on the dresser.

We also worried if her tiny ear canals would ever be clear and if her heart ventricles would close voluntarily, or if surgery would be required. We felt her head for the softness where the skull bone had not yet spread.

Jillian was always congested; her little lungs never welcomed an easy breath. We’d lay her in her crib and listen. Jillian’s breaths were a titanic struggle. They sounded like a wind gust rippling a flag. Place a paper bag over your mouth. Breathe in. It makes a racket. That was Jillian, sleeping on her back, in her crib, swaddled in a pink sleeper. A worrisome racket, always wheezing.