Parenting a 28-year-old ‘little girl’ full of highs, lows

Recently, I showed Lily how to give Eskimo kisses.

As with everything a 2-year-old does, she delivers them with enthusiasm — grabbing my face with her little hands and smooshing her button nose against mine, giggling all the while. It’s a wonderful, and on some days a little snotty, experience.

A while back, my neighbor Scott was laughing about having to give his daughter, Christie, Eskimo kisses and a high five while they were out shopping. He said he could feel people staring at them, but he didn’t care.

“I still look at her as a little girl,” he said.

Christie will be 28 on Dec. 7, just two days before I turn 31.


Even before she was born, her mom, Georgia, suspected that something wasn’t quite right with her. The baby hardly moved while she was pregnant; at 5 months, when they couldn’t detect a heartbeat, they thought she’d died in utero.

She had an amnio done, but it said she was going to have a normal, healthy female.

Christie was due on Christmas (which inspired her name) but was delivered by an emergency C-section when Georgia’s water broke weeks earlier.

Right away, Georgia knew this baby was different than the three sons she’d delivered. Christie’s eyes were deeply recessed and she had difficulty sucking, which made feeding her a nightmare.

The doctors said the baby was fine and sent her home.

Georgia took Christie to the pediatrician, who referred her to Hershey Medical Center. A team of doctors there examined the baby and said there was nothing wrong with her.

“I don’t care what they said, I couldn’t feed my own baby,” Georgia told me recently. “She made this horrible noise when she ate and she turned purple.”

It would take Christie an hour to swallow 2 ounces of milk. She never cried for food; Georgia always had to wake her up to eat. She also didn’t do the things a normal baby would do, like roll over or crawl.

She was like a blob, Georgia said.

Eventually, they took Christie back to Hershey, where doctors would sometimes spend whole days photographing her and drawing blood. They diagnosed her with Prader-Willi syndrome — a congenital disease that affects muscle tone and mental ability, among other symptoms.

Babies with Prader-Willi often have trouble eating as infants and struggle to gain weight, but then as children develop an intense craving for food, which can lead to uncontrollable weight gain and obesity.

Georgia read that people with Prader-Willi will go to any length to get food — even eating trash or dog food. Parents often have to padlock the refrigerator to prevent binges.

But that never happened to Christie. To this day, Georgia hesitates to say Christie has the disease — it doesn’t quite fit. She doesn’t know what’s wrong with her daughter, and she’s long since stopped trying to figure it out.

When you first find out something’s wrong with your child, you think that by finding out what it is, you’ll be able to fix it, she said. “But you can’t fix it.”

Instead, she and Scott have just accepted Christie for who she is.

When I talk to Georgia, it often strikes me how similar our lives are.

We’re both stay-at-home moms.

Our children rely on us to help them cut their food, bathe, get dressed and brush their teeth.

Our lives revolve around their routines: Lily would be devastated if “Mickey Mouse Clubhouse” didn’t show up on the TV every morning at 8, and Christie would be devastated if Pat Sajak and Vanna White weren’t on every night at 7.

Both go down for a nap at 1. Road trips with Jovie and Lily can be cumbersome. During the last vacation Georgia and Scott attempted with Christie — a trip to Cape May, N.J., in May — they had to come home early when Christie got pink eye.

But Christie is not a 2-year-old in a 28-year-old’s body.

She’s almost deaf and her speech isn’t always clear, but she understands more about the world around her than people give her credit for. She can read, has a photographic memory and knows sign language.

And Christie can get an attitude from time to time, too.

“When she’s mad at me, she calls me Georgia. When she’s hurt or sad, I’m mommy,” Georgia said.

Georgia once told me that all any parent wants is for his or her child to lead a happy and independent life.

Every day, I watch my girls grow. Seven-month-old Jovie crawls. Lily is speaking in sentences. All baby steps toward the day when they’ll venture out into the world on their own.

“Christie will never be that way,” Georgia said, a prospect that is even harder for Scott and Georgia to deal with now that they’re both getting older.

Last month, caseworkers from York/Adams Mental Health and Intellectual Disabilities & Disorders Program suggested it was time for Christie to start going to respite care. Now that Georgia is 60, they feel it’s critical that Christie go for overnights 30 times a year to help prepare her for a time when her parents can’t care for her.

Georgia knows it would be good for Christie, but she hasn’t mailed in the paperwork. Her heart tells her nobody will ever be able to care for her as well as she and Scott do. She’s heard nightmare stories about what life can be like in a group home, and she worries about her baby.

“The horror of it is, there are sometimes that I wish that she’d go before me,” Georgia said.

When she tells me this, I don’t recoil. I mourn for her impossible situation. I pray she can find a long-term solution that will allow her to rest easy.

If caring for a child with special needs has taught Georgia anything, she said it’s shown her humility and not to judge anyone until you’ve walked in their shoes.

And watching her with Christie reminds me how important empathy is.

There’s no room for judgment toward someone who’s given so much of herself — all of herself — to care for her child.

A few months back, Georgia and I were chatting about Christie on her driveway while I held Jovie, and Lily played nearby.

“I had the thought that I’d been preparing meals for her for 28 years and I’ll be doing it until I die,” Georgia said. “Some days I don’t know where I end and where she begins.”



Susan Jennings is mom to Lily, 2; Jovie, 7 months; Snacks the dog; and Bart, Peanut Butter and Delaney the cats. She is also wife to Brad the human. Read her blog at www.myinsidevoices.com.

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1 Response

  1. November 24, 2012

    […] Smart columnist Sue Jennings tells the story of her neighbors and their journey in caring for their 28-year-old “little girl.” […]

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