No Plateau
by
Jeff Stimpson
"After you have kids," goes the maxim, "the weeks
go slow, but the years go fast."
My son Alex will be seven next summer. Where have
the years gone?
They have gone to doctors, hospitals, conferences,
hatreds, gratitude, envy, frustration, and worry. It began before he
was born, a period when medicine invaded my life with scans, tests,
and pretty young doctors with crucifixes around their necks who
said, after eyeing my wife's sonograms, that they "would pray for
us."
That period, however, lasted mere months, and
turned out to be a rehearsal. Alex was born early on a June
afternoon in 1998, in a hospital in New York City. He was three
months early. They shouted "Boy!" and rushed past me. His head was a
gray tennis ball, his arms and legs thick as magic markers. The
father's first kick of awe and love sank into a feeling that Alex
looked like a doll. The doctors dove on him.
He was not a toy. He was human. I was his father.
I still am, and I can't remember what life was like without Alex.
Lately the last of the seven years has disappeared into the worry
that Alex, who has been diagnosed as autistic, will never live on
his own. The worry that he will die, not before us, but after. That
as an autistic adult, he will live in the care of strangers for whom
he is just a paycheck.
Alex's story started in a NICU, or neonatal
intensive care unit. Most families stay in NICUs for a few days or a
week. Some stay longer. NICUs have been compared to casinos: bright
lights, beeps, people with tired faces clustered in small, intense
groups. The babies live in plastic boxes. Tubes run in and out of
the boxes. Wires and tubes run into and out of the babies. There's
always a bell going off. A lot of people in NICUs talk about "odds."
He weighed 600 grams at birth -- about as much as
a couple of sticks of butter -- and he didn't grow in the NICU for,
well, a lifetime. Lungs are the last thing to develop in a baby in
the womb; preemies often have trouble breathing. Alex was intubated,
with pure oxygen pumped into his lungs. ("Banging away at his
lungs," one neonatologist once described it.) He wiggled. He didn't
make a sound, because the tube was between his vocal cords. The only
sense of balance came from the give and take of medical treatment.
The drug Lasix, for instance, got the liquid out of his lungs, but
retarded his weight gain. The same vent that kept him breathing
delivered oxygen that scarred the tissue of his lungs, making the
absorption of oxygen into his blood difficult. It's called BPD, or
broncho-pulmonary disease.
"It's 'damage,'" Jill used to say. "Call it what
it is: 'damage.'"
Alex spent six months in the NICU, came home a
week, suffered some kind of respiratory crash in a pulmonologist's
office - we think a nurse put him on an empty tank of oxygen, with a
broken gauge - and he went right back on the tube and right back in
the hospital. In the pediatric ICU, they had to keep this alert,
willful, 6-month-old baby chemically paralyzed to prevent him
pulling out his breathing tube. I asked one of his former
neonatologists, who worked two doors down the hall, to advise a
little on Alex's care.
"I have to tell you something," the doctor
replied. "It's my opinion that the aggressive questioning by you and
your wife during Alex's stay in the NICU altered the course of his
treatment to his detriment."
As I watched a nurse wet his eyes with artificial
tears (paralyzed, he couldn't blink on his own), somebody came by
with a charity present. I unwrapped it, looked at the little plastic
panda face, pressed the nose to produce the tinny circus music, and
wondered, if it wasn't too aggressive a question, what I had ever
done to deserve this.
On Christmas Eve, I went to a psychiatrist. She
was pregnant. "What you've been through," she murmured, looking out
her office window at twinkling lights, "it's inhuman." Good word,
doctor. Who spends a year in the hospital and then comes out to
begin his life?
What happened through the next seven years of my
life, the life of my wife and family, continues. Alex usually he
picks up his toys when we ask him. And ask him. He helps put away
the diapers that he still needs. He loves school. He spills his
Cheerios on the floor, yet has carefully walked the length of our
living room holding a glass cake plate without so much as a chip. He
has a little brother, whom he has caressed, shoved, hugged, and
bitten. He lives on chicken nuggets, some pizza, pretzels, Goldfish,
yogurt, and, lately, chocolate. He likes Elmo, and he likes to
paint. He can't sit still. He has few words, and shrieks instead.
Not long ago, in the grip of a fever, he said his first sentence:
"I'm thirsty." He still wears diapers. He will be seven. His mother
and father have aged many, many more years than that. There has been
no plateau." "That's what the story of Alex needs," people have
said. "It needs some plateau." No argument. But the essence of the
story, the secret of whatever power it contains, is that there is no
end. There has only been his beginning.
Copyright 2003 Jeff Stimpson, all rights reserved
