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Mom Story: My daughter has Williams syndrome

Julie Weingarden Dubin is a Michigan-based freelance journalist, blogger and author with three rocking kids, a loving husband and a trashed minivan. She covers parenting, health, psychology, relationships and pop culture for national mag...

How my 6-year-old spreads positive energy

Lisa Ridgley, a 36-year-old loan processor in Frederick, Maryland, treats her two daughters, Emma, 8 1/2 years old, and Tatum, 6, the same. Tatum has Williams syndrome (WS), a genetic birth defect characterized by medical problems, including cardiovascular disease, developmental delays and learning disabilities. Roughly 30,000 people in the U.S. have WS. It can affect anyone. Children with WS tend to be social, friendly and endearing, which is especially true for Tatum.

How my 6-year-old spreads positive energy

Lisa Ridgley, a 36-year-old loan processor in Frederick, Maryland, treats her two daughters, Emma, 8 1/2 years old, and Tatum, 6, the same. Tatum has Williams syndrome (WS), a genetic birth defect characterized by medical problems, including cardiovascular disease, developmental delays and learning disabilities. Roughly 30,000 people in the U.S. have WS. It can affect anyone. Children with WS tend to be social, friendly and endearing, which is especially true for Tatum.

by Lisa Ridgley
as told to Julie Weingarden Dubin

When my second daughter, Tatum, was 4 days old, she had heart surgery to fix what doctors thought was a narrowing of the aorta, but instead found her entire descending aorta was abnormally small. The heart problem led doctors to do genetic testing and at six weeks, Tatum was diagnosed with Williams syndrome.

Tatum’s aorta hasn’t grown since she was a baby. She’s always had high blood pressure. If she’s playing outside and gets tired, she’ll just lie down on the pavement. It’s her way of regulating her blood pressure. She won’t push herself physically. Her cardiologist doesn’t tell us to limit her activity because you can’t with a busy little one. We don’t treat her any differently than we treat our older daughter, Emma.

Sunshine girl

Tatum is in a regular kindergarten class with a full-time aide. The kids love her. She’s pulled from class for occupational therapy, physical therapy, special education and speech. Tatum will repeat kindergarten again next year.

Tatum loves singing, jumping on a trampoline, swimming, playing in the sandbox, going to the park and watching Mickey Mouse and Dora on TV. In the last six months, she started talking in short two-word sentences such as, “Cereal, please,” or “Swim, please.” Tatum’s reasoning skills are above her verbal skills -- she understands a lot more than she can communicate.

My little girl is happy, positive, loving, caring and well-adjusted. She’s very social, and everyone adores her. She hugs you if you’re sad, and she tries to engage anybody. She doesn’t worry that anything’s wrong with her because I don’t think she knows that anything is wrong with her -- I’d never tell her something is wrong.

I have a great relationship with Tatum, and she’s my little shadow, but it’s hard at times because I never get a break. I chase Tatum around like she’s a toddler. Plus, she’s not potty trained. But her demeanor is so sweet it makes up for it.

To know Tatum is to love her. She’s our little ray of sunshine, and she touches so many lives. If you're sad or in a bad mood, she'll cheer you up and give you a hug and a smile.

Facing the future

Tatum's biggest challenges aside from developmental delays have to do with her heart. At some point in her life, Tatum’s aorta will not be big enough to support her body. The doctors feel that because she is functioning fine, there’s no reason to do surgery, now.

I worry when Tatum needs her heart fixed that the doctors won’t be able to. I also worry kids will be mean to her as she grows up. But I can’t dwell on the negative or treat her like she’s a little fragile thing because that will give Tatum anxiety. I can’t spend every day petrified about her blood pressure levels.

We cherish every day we have with Tatum -- she brings so much joy to our lives.

Mom wisdom

Someone is always worse off than you. Go with the flow, be positive and take the good with the bad. Placing all your focus on the good -- it’s the only way to get by.

More on special needs kids and health

Answering questions about your special needs child
6 Ways to advocate for your special needs child
America’s top pediatric hospitals

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