At birth, Callie was diagnosed with several health complications that included a rare genetic disorder called Williams Syndrome. Williams Syndrome is a genetic disorder in which half of the 7th chromosome is missing. People who have this condition face a lot of difficulties with their health and development. She didn’t know what else to do so Callie’s mom prayed and it changed her life.
“The doctor said, ‘I guarantee you she won't see her first birthday' ... I just remember running out of the office, grabbing Callie out of my mother's arms – and just running."
Fourteen years later, Tabitha is able to share openly about her daughter’s experience and how this sweet girl has changed their lives for the better.
Starting A Family
Tabitha had always dreamed of having a big family. When she met her now husband, Keith, Tabitha was in middle school and he was four years older than her. Tabitha was not allowed to date until she turned 16. Keith patiently was waiting for Tabitha to graduate high school. During that time, he came to the house regularly and spent time with the whole family. It was no surprise when they decided to get married right after Tabitha graduated high school.
A year later they welcomed their first baby girl, Amanda. The pregnancy was smooth, no issues with birth and the family quickly bonded as a trio. Tabitha eventually quit her job to be a stay-at-home mother, caring for both Amanda and Keith’s mother who had become ill.
Four years later they welcomed Briana to their family. The girls were a blessing to the family. Tabitha and Keith loved being parents. Five years later, they welcomed Delaney. It felt like their family was complete.
"We were going about life, doing our thing every day," Tabitha says. "My husband started pastoring in a church, so I was known as the pastor's wife, and things were good."
In 2003, the family learned they would once again have a new addition. While they hadn’t been trying for another child, Tabitha and Keith were happy to welcome another baby. Just like the other pregnancies, there were no major problems and everything seemed to be going smoothly for Tabitha and her baby.
A Scary Turn
When it was time for Tabitha to be induced, the baby’s heart rate dropped rapidly and she had to have a c-section. In June 2003, Callie Madison was born. But what should have been a happy moment quickly changed.
"When they got her out," Tabitha recalls, "they held her up over the screen and she was really stiff. I think I knew then that something was wrong, even though they told me everything was fine. That night, she cried continuously, and I felt like a failure because I couldn't get her to stop.
A nurse came and took Callie to the NICU. Her oxygen levels and heart rate were very low. She remained in the specialized care unit for five days. After going home, Callie was not like Tabitha’s other experiences as a mom to a newborn. Callie cried endlessly. Nothing Tabitha did seemed to soothe her.
When she was two months old, Callie had a choking episode.
"With that episode, she went lethargic, she went limp and had a bowel movement," Tabitha explains. "We called 911 and went to Northeast Georgia Medical Center, where we were told that her blood pressure was sky high."
The time of joy was quickly becoming full of fear. Doctors were baffled. Callie’s blood pressure was high enough to cause an adult to stroke.
"They sent in a cardiologist and a geneticist," Tabitha says. "He immediately asked us if Callie looked like our three other children, and I said yes, but in my heart, I knew she was different."
That’s when Tabitha and Keith were told about the possibility of Callie truly being different.
A Surprising Diagnosis
The doctor suggested that she may have Williams Syndrome. Williams is a genetic condition that can cause medical problems including cardiovascular disease, developmental delays and learning disabilities. But there was another trait that would change them forever and Callie could never live alone due to her condition.
"He wanted to order tests," Tabitha continues. "He said she would be overly friendly, very lovable, and that (Williams syndrome kids) don't know what fear is. They love everyone."
What Tabitha and Keith didn’t know initially was how bad Callie’s heart problems truly were. It felt like the hits kept coming. Callie’s arteries were narrow and did not resolve or heal on their own. Like others with Williams Syndrome, her entire aorta was dangerously narrowed.
"Usually, they have narrowing in just the curve of the aorta," Tabitha explains. "Unfortunately, for Callie, there was only a pinhole for blood to go through."
The doctors prepared the couple that Callie could die at any moment.
"The doctor said, ‘I can't tell you that she has two days or three minutes,' " Tabitha recalls. " ‘We will do what we can with blood pressure medications – but if you could take off work, I would suggest doing it.' They guaranteed us that Callie wouldn't see her first birthday."
Mom Prayed For A Miracle
After days and weeks of testing and treatments, Tabitha found herself very discouraged. Why would this happen to someone who lived their life for God? In spite of this, she turned to her faith and began to pray. But her prayers were not bringing comfort and peace to the moment.
"A lot of people don't believe in the Lord, or that he could take care of things that others have given up on," she says. "I kept praying that God would heal Callie, I begged him to heal her... kept getting discouraged. I have been living for the Lord and trying to do right – but my child is sick, and we want her healed."
Tabitha was in a prayer service when she felt a tugging at her heart. She needed peace and had been missing something important. That’s when she felt God spoke to her.
"I was in a prayer service, and God said to me, ‘She's mine, I gave her to you – I want you to pray for my will to be done in her life,' " Tabitha says. "So I prayed that day – whatever your will is, take her now, 10 years from now – whatever it is, that's what I want."
As Tabitha began to feel her perspective change, this mom prayed the same prayer over and over. “Whatever Your will is” became her constant reminder. She knew that even in this hard time, she had to keep her faith. And that’s when a miracle happened.
God Takes Control
When Callie went in for her 6-month check up, the doctors were amazed. Callie’s aorta had grown a millimeter!
"The doctor said, medically, this does not happen," Tabitha recalls. "It's never grown again, but it's held its own."
While the troubles weren’t over, this tiny miracle was huge for Tabitha and Keith. They believed God was in control and would use this experience for good. The couple continued to pray.
When her one-year birthday came close, Tabitha found herself facing fear again.
"I remember shopping with my mom one day, when Callie was a baby, and I saw an outfit that said ‘My First Birthday,' and I picked it up and cried," Tabitha says. "My mom said to pick it up and buy it for her."
Sometimes Mom knows best! Callie was able to wear that onesie for her first birthday!
A Uphill Battle For Life
The on-going road has not been easy, as Callie had to face an open-heart surgery at the age of ten. She still deals with daily seizures, high blood pressure, asthma, and anxiety. Daily, her mom prayed for strength.
Since those first days, months, and years of uncertainty the family has learned that they must “live in the moment”. Each day is unknown and that helps them appreciate their situation even more.
"We live our life like we have tomorrow, or just tonight," Tabitha says. "Callie's taught me that we all need to cherish the things we have and the time we have with everybody. Live your life like this."
Even in this daily struggle, there is a huge blessing. Those with Williams Syndrome have a special way of connecting with the world. They have no fear, no understanding of hurtful emotions- only love and joy. This can mean that Callie often misunderstands someone’s responses but it also means that she is always able to see good in things. A very special gift.
Callie needs a lot of assistance throughout the day. She needs help doing little things like buttoning up her clothes and eating.
"She has moderate mental retardation," Tabitha explains. "She's very vocal and outgoing. She retains everything she hears, both good and bad. She can use things in the appropriate way but doesn't understand the meaning. To hear her carry on a conversation, you think she's wise beyond her years – she has no spatial awareness and left-sided weakness (from strokes). She needs help going up steps, putting on clothes, combing her hair, and she can't read."
One of the biggest challenges, however, is not helping her get dressed or staying on top of her health. Instead the challenge is protecting her kind heart and vulnerable personality.
Tabitha is very protective of Callie because she sees that this special gift puts Callie in danger. Callie is unable to understand that some people are unkind and that not everyone is as affectionate and caring as she is. Those with Williams syndrome cannot tell if someone is angry or upset from having a bad day. They are unable to read facial expressions and negative emotion and can be taken advantage of very easily.
Callie is in a unique position that her disability is also a huge blessing. While she may not always understand what is going on around her, it allows her to experience life with a different perspective. She is always able to seek the good in a situation and remind others of the positive.
When Callie had her most recent open-heart surgery, her positive outlook shown through. While she couldn’t quite understand the severity of what was happening, she knew that her family needed comfort. She kept reminding her parents:
‘I'm gonna be OK – if I don't make it through the surgery, I will be in heaven, and God will take care of me.'
With such a special ability, Callie is able to spread joy easily. She knows no stranger because she is so outgoing and welcoming. She will immediately try to make friends with everyone she comes across and shower them with a ton of compliments.
Callie’s Make-A-Wish Dream Comes True
One of the special moments in Callie’s life was when she received her service dog, “Doodle Dandy” through the Make-A-Wish Foundation. She believes that he is able to see the good in people as she does.
“…the main thing we have in common is love, laughter, and happiness!” She continues, “…he actually stole my personality away from me!”
Knowing that Callie is not able to understand the pain in the world, Tabitha still sees that Callie has something very unique to offer. Each day despite her condition, Callie is able to lead her family through love.
"I think the world would be a better place if we just had a little bit of the love that Callie has", her mom Tabitha TrueLove told SBSK.
In 2016, the Truelove’s faced most obstacles. Callie’s older sisters were in a bad car accident. One of the girls was bedridden during healing. But during that time, Callie was able to use her gift as an encouragement and love for her sister. Tabitha’s faith continues to be tested but she holds strong and takes each day as it is given.
"God just shows me that every day is precious," she says. "And we have to be thankful. We may not have the best of everything or a lot of money, but we just have to be thankful for what we have."
Those who have gotten to know Callie through her Facebook page or other means all say the same thing: She’s truly a blessing.
"The strength, love and courage she has, it's changed our lives. She's been such a blessing. She's taught me more than I could ever teach her in a lifetime."
WATCH: Callie Shares Love And Talks About Her Four-Legged Friend, Doodle
Callie’s interview was conducted by Chris with Special Books By Special Kids. Chris travels the world interviewing those with varying diagnosis’ so that they can share their story and help others connect with them.
h/t: The Advertsier