TO HAVE AND TO HOLD
Nice contrast with Dylan's story


To have and to hold
By Mary Delach Leonard
ST. LOUIS POST-DISPATCH
Saturday, Aug. 12 2006

Jeremiah Brower Cross will be held today — all day and all night — just as he
is every day and every night.

He will be pampered and patted and kissed.

"Isn’t he handsome?" his mom, Suzan Cross, will ask, as she runs her fingers
through the thick, dark curls atop his misshapen little head.

Jeremiah’s brain is severely damaged. He can’t see or talk, sit, walk or hold
his head up. He has cerebral palsy and seizures. And, though he will soon be 6
years old, he is the size of a toddler — just 3 feet in length and 31 pounds.

When Jeremiah was unhooked from life support machines six weeks after his
birth, doctors at St. John’s Mercy Medical Center feared that he would soon
die.

But Suzan and Sandy Cross, who would later serve as Jeremiah’s foster parents,
were not swayed.

"We told the hospital, ‘Let us take him home, and we will hold him until he
passes,’ " Sandy Cross says.

"And we’ve been holding him for five years."

‘Everyone deserves a good life’

Jeremiah Brower Cross has lived his life in his family’s arms.

No matter the hour. No matter what else is going on in their lives, or outside
their red brick house in the city’s Gravois Park neighborhood. Someone will be
holding Jeremiah. Supporting his head so he can breathe. Feeding him
strawberry-flavored milk. Changing his diaper.

Suzan and Sandy Cross’ children are grown now, but they have always helped
their parents care for Jeremiah. April, 21, has a knack for feeding him, her
mother says, while Melissa, 19, can coax him to sleep and Greg, 18, and
Matthew, 23, will play with him.

During the daylight hours, Suzan Cross, 45, is his primary caregiver, and she
sleeps just a few hours each night. She is also Jeremiah’s most vocal
advocate.

"I’ve been in this house for 5 1/2 years; I have issues," she will say, with a
laugh. But the tone in her voice isn’t kidding.

Jeremiah is not on life support, and he takes no medicine regularly. He gets
breathing treatments twice a day, and physical and occupational therapy once a
week.

Jeremiah’s heart is weak, and his health always critical. If he catches a cold,
for example, his fever can easily spike to 105 degrees and beyond, and then it’
s off to the emergency room — again.

Even on his best day, Jeremiah requires constant care. He whimpers when he is
uncomfortable, and will cry if he is in pain. He also coos and opens his mouth
for kisses. He likes big, loud smackers right on his mouth — the kind his mom
gives him all day long.

"I love him so much," Suzan Cross will say, and Jeremiah gets another kiss, as
she cradles him on her lap.

Jeremiah sucks his tongue when he sleeps, and he sticks it out when he is
hungry, his mother says. She flavors his PediaSure with Nesquik and feeds him
with a baby bottle. He can suck but he can’t swallow, so she pats his back to
help the formula get down to his stomach. She also pats him to keep his heart
going. And to fend off pneumonia. Cross is convinced that her patting helps
keep Jeremiah alive.

"Everyone deserves a good life," she will say.

That is why she warms Jeremiah’s baby wipes in the microwave and wraps him in
soft-to-the-touch blankets. She also buys toys that make noise because she is
convinced that he can hear.

At times, she looks deep into his clear, blue eyes, fringed with thick lashes —
"angel eyes," his father calls them — and wonders about his profoundly damaged
brain.

"There has to be something there because he knows who we are," she insists.

In the morning, she shoos everyone away while she cuddles with Jeremiah during
"The Jerry Springer Show." It is their special time together, she says, because
that is his favorite TV program.

Sometimes, Jeremiah will nap in the arms of one of his sisters or get a gentle
tossing from one of his big brothers.

When Sandy Cross comes home from work, Jeremiah is all his.

He cradles Jeremiah in his arm and sings a made-up song that drives everyone
else in the house a little nuts: "Booster, baker, candlestick maker ...
Booster, booster, booster ..."

Jeremiah takes his baths with his daddy, who turns them into play and therapy
sessions in the tub.

"Booster, baker, candlestick maker ... Booster, booster, booster ..."

Cross, 51, is a postal carrier. He has a walking route in St. Ann, and it is a
physically exhausting job, particularly when the weather is extremely hot or
cold. But no matter how tired he is, the first thing he does when he gets home
is scoop Jeremiah into his arms.

"I just come home from work and hold him and look at his face," Cross says.

When Cross retires, he has a plan: All he wants to do is hold Jeremiah.

‘I don’t know why’

No one really understands what happened to Jeremiah’s brain on Aug. 27, 2000,
the day he was born, the Crosses say.

Doctors say he has a functioning brain stem, which controls his breathing and
heart, but the rest of the brain isn’t there.

Jeremiah’s birth mother, Nina Brower, was 18, single and not prepared to care
for a critically ill baby. She says she was frightened to see his tiny body
amid all the machines supporting his fragile life.

"It’s hard enough to be pregnant at 17," Brower said. "I didn’t know how to
change a diaper, much less how to feed him through a feeding tube."

Brower is not related to the Crosses. They knew her because she once worked at
the same skating rink as their son Matthew. Suzan Cross took Nina under her
wing when she became pregnant, and when the Crosses saw Jeremiah, it was love
at first sight.

"I just loved him," Suzan says. "I don’t know why."

The Crosses were determined to help Jeremiah have the best life he could. They
helped Nina obtain his release from the hospital, and they offered to help care
for the critically ill child who was so tiny they bought his clothes at the
Build-A-Bear Workshop store.

For a while, Brower lived with the Crosses. She eventually decided to give her
parental rights to the couple.

Brower, now 24, has a 4-year-old son who was born healthy and normal. She says
she is grateful for all that the Crosses have done for Jeremiah.

"I love Jeremiah, but I don’t feel like I’m his mother. It feels more like I’m
his sister," she says. "They love him just like their own."

Suzan Cross says this about Nina’s decision: "She loved Jeremiah enough to give
him to us."

‘We love him enough to let him go’

Sometimes, Jeremiah’s health-care providers use the word "miracle" when they
talk about him. The miracle is not that he can be cured, they say, but that he
has lived as long as he has.

Yvonne Meyer, a pediatric nurse who was Jeremiah’s first home health nurse,
says that her job initially was to help prepare the family for the infant’s
death, shortly after the Crosses took him home in 2000.

"Basically, he wasn’t supposed to live until Christmas," Meyer said. "And now
he’s going to be 6 in a few weeks."

She admires the Crosses for how well they have cared for Jeremiah.

"His skin has been baby soft since the day he was born," Meyer said. "They went
with their instincts, and they went with their common sense. He was pretty much
held 24-7, and he is still held 24-7."

Jessi Behrends, an occupational therapist with Good Shepherd Pediatric Therapy
Services, makes home visits to work with Jeremiah once a week, and she has
gotten to know the family well.

"The family loves him so much. I know he’s alive because of them," Behrends
said.

She has had Jeremiah as a patient since he was 3, and his condition is not
easily explained, she said.

Jeremiah’s doctors at St. John’s declined to be interviewed for this story.

According to the medical records provided to Jeremiah’s therapists, his doctors
have diagnosed Jeremiah with microcephaly, a condition that results in a small
circumference of the head, either because his brain stopped growing or because
it didn’t develop in utero.

Technically, Jeremiah has only a brain stem. He also has cerebral palsy, which
permanently impairs his movement and posture. He has been diagnosed with a
seizure disorder. He is legally blind. And he has no sleep-wake cycle, which
explains why someone is always awake in the Cross household.

"His condition is so rare," Behrends says. "He has lived so long without a
brain. He doesn’t have the neurological functions to live, and yet he’s
living."

Behrends says that science can’t always explain what she observes when she is
working with Jeremiah, such as the change in his demeanor when he doesn’t want
his legs stretched, or the lightening of his mood when she hands him back to
his mother.

The Crosses have been told repeatedly that Jeremiah could die any day.

For that reason, Sandy and Suzan never leave him with anyone, not even their
children, for long periods of time.

Should Jeremiah die today, they want him to die in their arms, Suzan says. That
way, no one will feel as though they did something wrong.

While the Crosses insist on doing everything they can to make Jeremiah’s life
comfortable, they say they will draw the line at life-support machines.

"When the time comes, we are just going to hold him and let him go," Suzan
Cross says. "We love him enough to let him go."

Goodbye for now

Every time Jeremiah undergoes a medical procedure, the family gathers to say
their final goodbyes.

Such was the case May 23, when Jeremiah had surgery at St. John’s to implant a
feeding tube in his stomach. Though Suzan Cross had misgivings about the tube —
she insists on feeding him by bottle — she acknowledged that the tube will make
it easier to give Jeremiah medication when he needs it.

The surgery required Jeremiah to be put under anesthesia, and the Crosses were
fearful because his heart is so weak.

Dr. Niyati Winn, the anesthesiologist, talked to the Crosses just before
surgery, emphasizing that this was a dangerous procedure and that Jeremiah
could die.

When it was time to take him to the operating room, Winn did the kindest thing
any doctor could have done for the Crosses at that moment: She gently picked up
Jeremiah and carried him down the hallway in her arms.

mleonard@post-dispatch.com | 314-340-8260