'One day at a time'
Two Westchase mothers feel blessed by their special-needs children, and their own friendship.
By STEPHANIE HAYES
Published August 25, 2006
The kids play outside and the moms debate the merits of peanut butter and jelly sandwiches. Kristin O'Donnell uses the premade kind. Sue Gordon cuts the crusts off.
Standard mommy talk. But the standards here are different.
O'Donnell's 2-year-old daughter, Katie, lies in a high chair. She can't eat the PB&J. She'll eat a few bites of baby food and have the rest of her meal through a feeding tube.
Outside, Gordon's daughter Catie screams. Gordon opens the sliding door because she thinks the door is upsetting her daughter. But Catie can't confirm that that's what's wrong. At age 5, she knows only a handful of words.
O'Donnell, 35, and Gordon, 37, are neighbors, friends and full-time moms in Westchase's Kingsford village. Their daughters, by coincidence, bear almost the same name. And each has an extremely rare affliction.
Katie O'Donnell has Aicardi syndrome, a debilitating genetic disorder. There are fewer than 500 known cases in the world. Catie Gordon is missing part of her 22nd chromosome. There are about 270 known cases worldwide.
The moms have each other when they want to cry or when they want to scream at the sky and ask "why?"
Or if they need a special-needs catalog or a hand-me-down therapy tool. If they have advice on schools and programs.
They have each other when they hear their daughters express love without words, and when - despite the frustration, the doctor visits, the close calls, the desperation - these moms say they are "so blessed."
* * *
It was a perfect pregnancy.
There were times, O'Donnell recalls, when she felt some strangely rhythmic kicks.
Could the baby be having seizures? she asked the doctor. No, not likely.
Katie was born and the parents checked her fingers and toes.
"Her left middle finger is smaller and I remember thinking, how did that happen? We don't drink. I took my prenatals. That doesn't happen to people like us."
"We look back now and are like, we'll take the finger any day."
Katie has no corpus callosum, the region of the brain that separates the two hemispheres. She had more than 3,000 seizures before her first birthday.
The entire left side of her body is smaller. She has 10 ribs on the left, 12 on the right. She has scoliosis, curvature of the spine.
She is mostly blind, but O'Donnell thinks Katie can see light and shadows with the help of glasses.
"I thought my world was over. I thought my life was over. I looked at my husband and said, 'I can't do this, I can't do this, I can't do this,' " O'Donnell said.
"We've got to take it one minute at a time," said her husband, Todd. "Starting right now. Ready?"
And so it goes.
Most days, O'Donnell, who is six months' pregnant with twin boys, tends her 5-year-old daughter, Molly, and gets Katie out of bed before 8 a.m.
She feeds Katie a few bites of baby food and then gives her the rest through a feeding tube. She gives her medicine for seizures, medicine for acid reflux, a medicine for constipation caused by all the other medicines.
Therapists help her sit up, roll over and strengthen muscles. She has a brace that places her in a standing position. She wears stiff boots that flatten her feet, which are pointed from all the seizures.
Molly knows that her little sister has "boo boos" on her brain, on her back, in her eyes. O'Donnell said they tried calling Katie "special," but thought, "Well, Molly's special, too."
O'Donnell has braved stares and questions from outsiders. Why do you need to park in the handicapped space? Who are you buying the baby food for?
She has also deflected harsh words from blunt doctors. She'll never walk. She should have been a miscarriage.
"She fought her way here, so we're going to give her the best life she can have," O'Donnell said.
She tells herself that "God is not going to give us more than what we can handle," as she prepares for the birth of her twins.
O'Donnell sees Katie as a precious gift, and part of God's plan. "There's a reason for everything," she says. "I'm not saying we don't have our days, but she's really helped put things into perspective. We take it one day at a time.
"As difficult as it can be, in a million years, I would never, ever trade this."
* * *
Mama, Dada, thank you, go, out, get down, up, no, off, here go.
At age 5, this is Catie Gordon's vocabulary.
"I used to have dreams where all of a sudden she would say a sentence to me," said her mother, Sue.
Catie has 22q13 Deletion syndrome, also known as Phelan-McDermid syndrome. She is missing part of her 22nd chromosome, causing slow development, neurological impairment, absent speech, large, fleshy hands, thin toenails, prominent ears and low muscle tone.
Catie has physical limits - she can walk, but she can't jump and tends to bump into things. Her speech is limited, but she understands much of what is said to her.
Gordon and her husband, Craig, endured 41/2 years searching for a diagnosis. Early on, something was clearly wrong. Gordon said her new baby was "floppy."
"She was limp. Even at 9 months old, we were still supporting her head," she said.
At 6 months, doctors recommended physical therapy.
Catie eventually learned to crawl and walk. But time passed, and there were still no words. Frustration set in for the family. At school, Gordon's now-7-year-old son, Matthew, wrote a letter to Santa Claus that she still keeps in a file of Catie's history:
All I want for Christmas is for my sister to toc.
"Santa" wrote back: If you really listen, she talks to you all the time.
Catie constantly repeats the words she knows. She communicates in other ways. She'll push you in the direction she wants you to go, hand you things and look at you with expressive, glittery little eyes.
"She's generally a pretty friendly girl, but whenever we go anywhere, I have to be careful that she doesn't wander off because she has no vocals," Gordon said.
In school, Catie was labeled "delayed development" and put in special classes. Gordon kept searching for an answer.
In May, she visited the Phelan-McDermid Web site and posted to a message board. She described all the tests, all the false diagnoses. The next day, the group moderator sent Gordon an e-mail. It said, "I bet a case of beer she's one of ours."
Catie was tested. She had the deletion.
Gordon cried as she e-mailed her family and friends with the news. She called her husband at work. He went silent on the other end of the phone.
Still, it was bittersweet. Until that point, the Gordons held out hope that Catie could get better, that she would overcome whatever hurdle was holding her back.
"You have thoughts of walking your daughter down the aisle, and these things are gone forever," Gordon said.
But she still dreams big. Her hopes for Catie are the same as her hopes for her other children: Matthew, Tommy, 12, and Joey, 2.
Life is busy, but Gordon insists she's just like most moms. She shuttles the kids to school and summer camp. A couple of times a year, she takes a weekend away with girlfriends.
She'll fetch ice pops from the freezer, plug Finding Nemo into the DVD player and turn around to wipe Catie's nose or give her hugs.
"I just don't feel like we're that handicapped," she said. "To me, she is just Catie."
* * *
The two mothers met at a neighborhood Bunco night more than a year ago and started chatting.
O'Donnell says, "We were so excited when we realized our kids were ..."
"... special," Gordon finishes.
They got lost in conversation for hours. At the end of the party, they hugged.
When the weather cools down, Kingsford moms stand on the sidewalks or lounge in the driveways. For O'Donnell and Gordon, talk often turns to their daughters.
They chat about new books and share special-needs catalogs and therapy tools. One time, O'Donnell tossed out an idea to Gordon: "We should start a support group."
They put feelers out in World of Westchase, the community newsmagazine. Gordon has heard from a couple of area moms with disabled children. They hope to have regular meetings, widening the network of people who understand.
The other moms in the neighborhood deliver dinners, babysit and host play dates. They're great friends for gabbing, sharing shoes and decorating. Many have learned how to use Katie's feeding tube and give her the medicine to stop big seizures.
But experience and reality draw the line of understanding, leaving Gordon and O'Donnell together on the other side.
Who else knows how to explain to a child why someone called his sister "retarded"? Who knows what to say when your 5-year-old asks, When is my baby sister going to get bigger so we can go shopping and she can run with me?
Which other child on the block can't say, I love you, Mama?
Both women are heavily involved in online support groups. They trade e-mails with people around the world.
But there's nothing like a real neighbor.
O'Donnell recalls how she once stopped by Gordon's house for a "few minutes" and stayed for an hour and a half.
"It was very intense," she said. "We were just mad. We just both were like, 'You know, this is so unfair.' "
Together, they can speak freely without keeping up appearances. "You talk about your dark thoughts that we won't express," Gordon said.
You say things that other mothers just wouldn't understand. Not just the "dark" thoughts, but declarations of faith and hope that are equally unfathomable to the world at large.
You celebrate the empathy in your older, healthier children. You appreciate your strength, greater than you ever imagined.
"You have no idea how much you get from this child," Gordon said. "It seems like you have to give all the time, and you always have to run around and do things, but you get so much and it is such a blessing in your whole family that I wouldn't change it. I wouldn't want her 'fixed.' "
* * *
Catie Gordon's little eyes light up when she sees Katie O'Donnell.
"My Catie loves babies, strollers. Anything to do with babies and strollers," Gordon says. "So when she sees Katie, she just thinks "oooh, baby!"
Catie likes to take the pacifier out of Katie's mouth, just to give it back to her again.
"My Katie will just kind of sit there like, 'Okay, my paci's gone. Oh, it's back in my mouth. Oh, it's gone again. Oh, it's back in my mouth,' " O'Donnell said. "It's just this fun, cute game they play."
It's still lunchtime at O'Donnell's house, and Catie has calmed down from the sliding door moment. O'Donnell and Gordon eat sandwiches and talk about the kids.
Catie quietly pads past the moms and comes up to Katie's high chair. She looks at Katie, smiles and gives her a gentle kiss on the head.
Stephanie Hayes can be reached at 813 269-5303 or email@example.com
FOR MORE INFO
* Sue Gordon and Kristin O'Donnell are at the early stages of forming a support network. To find out more or get involved, contact Gordon at firstname.lastname@example.org
* For information on Aicardi or Phelan-McDermid syndromes, visit www.aicardisyndrome.org or www.22q13.org.