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Parenting: Finding Joy in the Journey

Finding Joy in the Journey
Posted at 3:30 AM, Sep 21, 2021
and last updated 2021-09-21 06:56:51-04

For Bridget and Travis Hargrave, Anna is their bonus or surprise baby.

With only one ovary, Bridget was not supposed to have any more children. But, she said, God had other plans.

While all pregnancies are different, Bridget said this one threw her for loop; she attributed most of it to being ten years older.

Bridget found out that she was pregnant with twins, but Anna's twin did not make it.

"But from that moment I had this feeling," Bridget said. "Moms just know."

Anna was born a healthy 7 pounds and 7 ounces. It was not until Bridget and Travis brought her home that they noticed she was not hitting her milestones.

For the next few years, the Hargraves got one diagnosis after the other.

"She was misdiagnosed with a bunch of things," Bridget said. "They told us she could have cerebral palsy, Dwayne's syndrome, and then they would take all of the diagnosis back."

Then one night a seizure.

Bridget says paramedics overdosed Anna, who was two at the time, with seizure medications.

No matter how bad all of this sounds, Bridget said it was a blessing in disguise.

"If not for that we would have never gotten this diagnosis."

That diagnosis came days after a genetic test. Anna has Koolen-de Vries syndrome. Basically, what the test showed was that Anna has part of her 17th chromosome, quadrant 21.31, missing. This can cause developmental delays and mild to moderate intellectual disabilities.

Something else Bridget and Travis found out is that there is not much information out there about Koolen-de Vries.

"They said when she was diagnosed that 1 in 16,000 people had it," Bridget explained. "Now there is more because a lot of people don't know because they aren't genetically tested. If you don't have the epilepsy, then you live your life and don't know. Maybe you didn't learn as quick as other people or had quirks you just didn't see."

With little information to go on, Bridget and Travis relied on the Kools community to help them navigate this new journey. Bridget started to make notes, those notes eventually turning into an informational packet that she hands to Anna's doctors, teachers, caregivers, or others who just want to learn a bit more about Anna.

"It's just a new road for us."

That road leading them to Cathedral Carmel where Anna goes to school. It has also linked them with another Kools family out of Houma. They moved to Lafayette after their home was damaged during Hurricane Ida. Anna now has a friend who looks like her, thinks like her, and a family who truly understands.

"It's like Christmas morning! That's the only way I can describe it," Bridget said. "They were just so sweet. They just got out of the car and hugged each other like they had known each other for years."

"The chances are....it's almost impossible, but somehow it happened," Travis said.

"It just brings so much joy and hope to see them connecting and to just have that other person that looks like you, talks like you , and walks like you," Bridget said. "They could be sisters."

With a friend by her side, Anna is ready to conquer the world, at her own pace. Her parents saying they would not have it any other way.