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.

My mom story

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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Comments

Comments on "Mom Story: My daughter has Williams syndrome"

Kristi May 04, 2013 | 10:11 PM

It is so nice to hear and be reassured that there are other Mom's out there with the same concerns and challenges, but also the same enthusiasm and hope for their children with William"s Syndrome. Our Evy (age 6, with William's Syndrome) brings hugs, humour, and happiness to our family everyday, she and her older sister Jacquelyn (8) truly made me realize the depths of unconditional love. With or without William's Syndrome there are challenges to being a parent, I feel that having a child with William's Syndrome has helped us to slow down, help our children develop at their own pace, and let go of some of the outside pressures placed on parents to "create" perfect children. Let them be healthy, happy and loved...

Veronica March 04, 2013 | 7:40 PM

I have a son that was diagnosed with William when he was 8month old and he has a heart mummer and has supra value aortic stenosis how could I know about Ledbetter redlux is there a test the doctor has to do

Danika Bergstrom November 06, 2012 | 4:30 PM

Thank you for sharing your story. I have a 4 year old that has had 1 open heart surgery and 2 cardiac cath surgery's. We removed her left kidney due to the stenosis in it last month. She is doing great. Wondering if any of you have eating problems with your child? Not sure if they have smaller stomachs or if she just doesn't like to eat and just run around. They truly have more energy than a normal kid it seems. It was really nice to read also that potty training is delayed as well. I have been trying for over a year now and still haven't gotten her to go by herself. They are amazingly sweet children we are all lucky to have one.

Brigette June 09, 2012 | 10:19 AM

I really enjoy reading about other children with ws I became a mom @ 16 so a lot was new to me & I'm still learning and researching and it took a while to comprihend that my daughter was a little different...but I wouldn't change her for the world she never had a small arotic valve but she did have a heart murmer and now has kidney redlux due to the ws but we try and make her feel just as normal as my other daughter! She is a complete joy and loves singing! Thanks for sharing your story:)

Erin March 23, 2012 | 4:21 PM

Thank you so much for sharing this story that is so dear to my heart. My 3 year old has Williams Syndrome and was diagnosed at 3 months old. I also have the honor of knowing Tatum and her family! Lisa is an amazing mother and I proud to call her my friend!!

Kerry March 23, 2012 | 3:23 PM

Its great to read stories about other children with William Syndrome. My daughter, Kara, was diagnosed at three month after the doctors realised that she has aortic and pulimary stenosis. Kara had surgery at eleven months to repair her aortic valve. She is a energetic four year old and has so many wonderful qualities. She brings a smile to the face of every person she meets. Kara attend main stream nursery with the help of a full time classroom assistant and will repeat the nursery year again. With help we hope she can complete main stream school. Kara is the light of our lives and we love her very much.

Belle March 23, 2012 | 2:49 PM

Beautifully written and portrays the warmth of the writer. Thanks for the information.

Lauren March 23, 2012 | 12:08 PM

My daughter Carlee-Jane is 4 and was diagnosed with WS at age 2. I would not change a thing about her!!! Sure I have worries but I feel truly blessed she is in my life. We teach each other so much and grow closer every day. Children with WS have many positive, unique qualities and if we all would adopt some of these characteristics into our own daily lives the world would be a happier place. Great article! Tatum and Carlee-Jane seem very similar. Thanks for sharing! :)

Chuck March 23, 2012 | 10:26 AM

I have the honor of personally knowing tatum and her family. Awesome family. Tatum and my son Charlie are pool buddies!!

Christina March 23, 2012 | 9:30 AM

I really enjoyed this article. My son is almost 6yrs. old and he was diagnosed when he was 6 weeks old. He has the high blood pressure, and the cardiac problems as well. I have the same worry and fears that you have. He has had heart surgery for his aorta and pulminary when he was 8 months old.

Patti March 23, 2012 | 8:51 AM

Really enjoyed your story as my daughter is 4 with Williams Syndrome. Everything you said I felt like I was reading about my own daughter.

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