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by C. Jeanette Tyson
You don’t
leave this table until you finish your broccoli.
You’ll eat what the rest of the family is
eating.
Pick up your toys, then we’ll talk about ice
cream.
They’re no doubt familiar phrases. But before we
get into those, I’d like to tell you about Cathy and her daughter Jeannie.
Jeannie was born with a rare growth disorder called
Russell Silver Syndrome, only no one knew that at the time. All anyone in
the German hospital knew about this three-pound, eight-ounce baby was that
her body was small and her head was exceptionally big.
Jeannie was immediately whisked away to another
hospital. Cathy, who’d had a complicated c-section, was confined to bed.
"That book, What To Expect When You’re
Expecting, told me how important it was to breastfeed. My brain was
consumed with it," Cathy says.
She was able to get her colostrum to Jeannie’s
hospital but nurses promptly threw it out.
"I told them I wanted her to have that milk
and they didn’t care at all. She didn’t get the first stuff, the very
best stuff, all the books say you have to have. It all started off
wrong."
But in the first months, Jeannie was happy, and
growing. No one was alarmed.
Then, during a visit to California when she was
eight-months-old, Jeannie developed bronchialitis. She was so tiny, the
doctors had trouble getting the IV to stay. They accused Cathy of abuse.
One of the doctors suspected cystic fibrosis. But
back home in Brussells, where Cathy and her husband were now living, doctors
finally diagnosed Jeannie with Russell Silver Syndrome.
No cause has been found for this genetic misfire.
The disorder can be characterized by asymmetric features, impaired cognitive
skills, retardation and webbed feet. Most cases go undiagnosed.
Another trait is a complete lack of fat cells.
Because her body had no muscle or fat and her head was so heavy, Jeannie
never crawled. Unable to move, she couldn’t fight off the usual bugs. She
was sick and cranky, miserable, all the time.
At a year, when a child's meal might include mashed
peas, applesauce and pureed lamb stew, Jeannie still took nothing more than
milk with a little rice mixed in.
Or sugar.
"I noticed instinctually that sugar helped
her. I would give her chocolate. She would crave it, she was totally drawn
to it. I’d put sugar in her bottle, though I wouldn’t tell anyone. But
she would be happy for a brief time."
At that point Cathy was still feeding Jeannie every
hour.
It wasn’t exactly her idea of what motherhood
would be. She couldn’t make friends and even family members were
skeptical.
"Nobody could understand what was going
on. Why was she so skinny and why was she crying and screaming all the time?
Why wasn’t I feeding her?"
But other parents of children with Russell
Silver told Cathy to throw out all the books and forget what people said.
These kids need salt and they need sugar; other traits of the disorder
include excessive sweating and hypoglycemia. Their bodies can easily slip
into something like shock. Force-feeding is the worst thing you can do;
there is no fat so there is no storage.
"These kids are not malnourished at all.
What they need to run their engine, they ask for and they get. It's
unbelievable but you have to live with it," Cathy says.
Jeannie lived mainly on milk until she was
four-years-old. She craved frosting and potato chips. She might take a bit
of pasta. She’d go weeks and not eat anything, then she’d eat
everything. Cathy was always cooking, always ready. "I was dying to get
some food in her," she says.
Then the family moved to Austin.
Maybe it was the four-year turning point doctors
were waiting for, maybe it was the big sky and sunshine, but Jeannie began
to grow. She’s eight now and hasn’t been sick in three years.
There’s a bag of cookies in the nurse’s office
at school to help keep a steady flow of sugar through her system. For
breakfast, Jeannie may ask for Poptarts or she may ask for eggs and bacon.
Cathy gives her whatever she wants.
"There’s a bond with your child. You know
what they need and they know how to tell you. You just have to listen."
Eyebrows still shoot up when Cathy refuses to make
Jeannie finish her plate, when she doesn’t follow the food rules.
"But that is the rule of nutrition, to follow
what your body wants. What I really learned is that every body is unique and
special and needs different things. We’re not all the same. That’s for
sure what Jeannie’s about. I can’t tell her what to eat. If I was in
control of it, would I really know? I have to trust her."
Jeannie likes being small and cute. But she hates
when kids her own age pick her up and treat her like a doll. Friends who
continue to do it don’t last long. "She’s definitely a take-no-shit
kind of kid," Cathy says.
Jeannie asked the doctor how tall she might be,
eventually. The doctor walked to the door and held his hand there: 4’11,
maybe an even five feet. She likes that. A lot.
So when it comes to that most sacred part of
motherhood, the nourishment of her child, Cathy doesn’t go with the things
she’s always heard. She doesn’t have that option. And yet all is as it
should be.
So let’s go back to those things I mentioned in
the beginning, some of those clichés that float around our tables.
Let’s think a little about those.
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C. Jeanette Tyson is a freelance writer with twenty years in the
advertising business and nearly three years in the mama business. If you
have a child with Russell Silver or suspect you might, Cathy would be happy
to talk to you. Got a tip, suggestion, idea or feedback for A Little More on Your Plate?
Send it to Jeanette at: foodie@austinmama.com
