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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.
__________
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

       

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