Grand Forks mother of child with Down syndrome talks about her journey to writing a child’s book

Becca Hudson had every expectation the baby she was carrying would be healthy.

Because she and husband Rob were 36 and 41, she underwent prenatal testing to look for signs of abnormal fetal development during her second trimester, and they were assured “there was no reason to believe their baby had Down syndrome,” she said, and any worries along those lines were dismissed.

Mom and dad were elated when Presley Ann Hudson arrived Aug. 7, 2006.

“They handed her to us and said something like, ‘looks fine,’” Becca said.

Exhausted from the 30-hour ordeal, Becca and Rob fell asleep. They awoke a short time later to find that Presley had been taken to the intensive care unit where a nurse informed them she would need a complete blood transfusion, heart surgery and the baby had Down syndrome.

Becca was in shock and grief.

“My knees buckled,” she said. “I felt like I was going to pass out.” She and Rob were overwhelmed with the prognosis, technical terms and predictions of what lay ahead.

“They told us all the health problems we could expect, how delayed (developmentally) she’s going to be, thyroid and heart problems she would have,” she said. The list went on.

She grieved over losing the vision she had of what Presley was going to be, she said.

Little did she know then how this baby girl would change their lives. She later wrote, “I wish I had known what a remarkable person our daughter would become.”

‘Going to be alright’

Because of her experience and a desire to lift the hearts of other Down syndrome parents, Becca wrote and illustrated “What I Want You to Know: Messages of Hope and Joy from Your Baby.”

She began working on illustrations for the book in August after moving to Grand Forks. She wrote the text in a day, she said. “I had been thinking about this for a long time.” Through her work, she hopes parents will see “how similar, normal and happy your life is going to be,” she said.

The book conveys “some of the most basic lessons my daughter has taught me, in the hope that it calms the fears and offers parents a moment of heart-warming perspective.

“Your baby will love you, and you are going to love that kiddo more than you ever thought possible. That is everything I want you to know, and it’s all that truly matters.”

Presley inspired the playful images that accompany nuggets of wisdom as told from a baby’s perspective.

“I wanted to keep it charming and simple,” she said. While the book is not intended for kids, she can foresee parents reading it to them.

She’s sent the book to advocacy and parent groups throughout North America that are dedicated to helping families touched by Down syndrome.

“I just want to get it out there, to reach as many people as possible,” she said, and she’s gotten “great feedback,” she said. An Australian family, from whom she received startup funds for the project, has offered to help with a Spanish version of the book. They too have a child with Down syndrome.

Despite prenatal testing, Down syndrome occurs in one of every 700 live births, Becca said. “So there are plenty of people to reach out to.”

Everything’s a game

Presley, 6, has inspired her parents and those around her more than she knows, Becca said.

“First of all, she’s absolutely adorable. She has the best sense of humor. She makes a game out of everything, no matter how much of a hurry I’m in or how serious something is.

“She keeps us laughing and on our toes.”

Becca is also inspired by her daughter’s tenacity.

“She’s a little fighter. If she enjoys something or is determined to do something, nothing is going to stop her,” she said. “Like with the remote control, she’ll sit and watch you, and ask, ‘how do you do that?’” until she catches on.

At Kelly Elementary School, where Presley attends kindergarten, “teachers fawn over her; they’re always telling us how cute and funny she is.”

Because of her special needs, people tend to feel protective of her, Becca said. But “she quickly reminds you she doesn’t need that.”

While grocery shopping recently with her mom, Presley suddenly slapped a man and said, “Tag, you’re it!” Becca said. “They were laughing, and he chased her around.”

Becca was glad the man didn’t react negatively, she said, adding about her daughter, “Who does that? She slaps a stranger on the back!”

People have been “great,” she said, “especially in this town. We’re very blessed.”

Presley is doing well at Kelly where she spends most of her day in a regular class, and leaves the room to work with special educators and speech therapists, Becca said. She’s reading and adding double-digit numbers.

She also has a “wonderful nanny,” a UND student, majoring in early childhood education, who looks after Presley when Becca and Rob are at work.

“We’re very fortunate to have found her,” Becca said.

But Becca knows she and Rob can’t always protect their daughter from the world and worries about her being bullied or intimated — “things that were in the front of my mind when she was born.”

She reads troubling estimates of the increased likelihood that children with Down syndrome will be bullied or attacked, but they “remind us to keep vigilant that she’s always in a secure place,” Becca said.

Looking back, did she ever question, why me?

“Yes, that went through my mind a lot,” she said. “It was just my draw in life. The ‘why me?’ thoughts faded before we left the hospital.

Down syndrome is a chromosomal anomaly, a “genetic fluke,” she said. “I never felt guilty or thought it was because I had done something. She was not the child I expected.”

She’s unique, but not that different.

“Presley is not always happy. She gets mad or happy just like other kids,” Becca said. “Down syndrome babies generally are easy babies. There’s something so sweet about them.”

Becca’s message is heart-warming — and hopeful.

“I’m not going to say your life isn’t going to change. It is going to change — but for the better.”

Call Knudson at (701) 780-1107; (800) 477-6572, ext. 1107; or send e-mail to pknudson@gfherald.com.

The book is available at Ferguson Books and Media in Grand Forks, www.Amazon.com and most major online booksellers, or at www.RAHudson.com.

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