Down Syndrome Month Sadie, age 4, helping to raise awareness
Caption for Just Sadie: Sadie, 4, is helping her family and others realize the value and beauty of a child with Down syndrome. October is Down Syndrome Awareness Month. (Photo by Arrowleaf Photography)
By Gaye Bunderson
When asked what she’d say to a mother who just gave birth, Steffanie Larriba replied, “I would say, ‘Congratulations’.” No surprises there – until you realize the question was asked this way: “What would you say to a mother who gave birth to a baby with Down syndrome, and what advice would you give her?”
No, Larriba did not misunderstand the question. Four years ago, she gave birth to a baby with Down syndrome. Larriba and her husband Frankie named the little girl Sadie. She’s been their bundle of joy ever since, starting with her first visit to a pediatrician.
“My pediatrician said to me first thing, ‘Congratulations’. And I thought, ‘Doesn’t he know the baby has Down syndrome?’ We talked about it, and he said he had a brother with Down syndrome.”
Yes, he knew. And he meant to say “Congratulations!”
The Larribas are people of faith and feel Sadie was given to them to help other parents of children with Down syndrome and to give them encouragement. Steffanie wrote a book titled, “He Gave Them Something Extra,” a reference to the extra chromosome children with Down syndrome are born with. She is now working on a second book titled, “He Gave Me Something Extra,” about Down syndrome from a mother’s perspective.
In 2021, she addressed the Idaho Legislature regarding a bill that would help pregnant women realize that having a child with Down syndrome was a positive event, not an adverse one. “Sadie was on my hip the whole time and was well-behaved,” said Larriba.
Sadie turned 4 years old this past January, and if you’d like to know what she’s been up to ‘all those years’, the list is long and includes plenty of fun.
On June 22 of this year, her mother said, “She had her first swim lesson and rocked it – she’s amazing. She used a noodle and did some kicks and then was jumping into the pool into her instructor’s arms.”
It had been the family’s hope that Sadie, who loves equines, could ride a horse this year but, according to her mom, “She’s still too small for a horse, so we’re waiting until she’s a bit bigger – maybe next year.”
Still, despite her dimunitive size, Sadie has achieved some big accomplishments, such as:
• She’s acquiring more and more oral speaking skills and learning sign language as well; she’s still working on both. “There is some delay, but her vocabulary is quite vast,” said Larriba.
• She goes to a regular ballet class and, said her mom, “She’s super-focused, and she excels. She listens to the teachers.”
• She plays a number of simple musical instruments and mastered the ever-popular “Twinkle Twinkle Little Star” on the chimes.
• She loves books and reading. At present, people read to her, and she is especially fond of “Curious George” – a nightly reading ritual at the Larriba home.
• She’s an acclaimed hugger and isn’t stingy with displays of affection. Her mother shared a story about a recent display of love: “We were in a store and a really sad-looking woman was behind us in line and commented on how cute Sadie was. We made small talk and I could tell she was down about something. Sadie looked at me and then looked at her, pointed to her and said, ‘I love you.’ The woman clutched her chest and said, ‘That makes me feel so special. You don’t know what that did for me!’ God is using this little girl in ways that I will never know but am so beyond blessed to witness.”
‘This little girl’ has become a beloved part of both her parents’ extended families. “The grandmas are crazy about her,” Larriba said.
Okay now, let’s cut to the chase: Sadie can’t be perfect. Right? When asked if her child ever acts up like other children, Larriba replied, “She tests us every day – she’s very typical in that way. She’s very determined. Her key trait is an ‘I can do it’ attitude and not giving up.”
It’s a trait that serves her well and one she’ll no doubt need all her life long. Sadie takes longer to master skills other children take for granted, such as jumping. Her mom said she spent a lot of time just trying to get Sadie to figure out how to jump, but with the patience of both mother and daughter, the child mastered it. “She jumps everywhere all the time now,” Larriba said.
Another challenge she needed to conquer was riding a tricycle. “It took her a good year to learn to ride a tricycle, but she can do it now. Every triumph is a celebration.”
Larriba serves as the typical mom-teacher. She works devotedly with Sadie on all her skills. “I ask her if she wants to do things. I push her in a healthy way,” Larriba said, then thinking maybe “push” wasn’t the right word. “I encourage her,” she corrected.
The Larriba family – Frankie, Steffanie, and Sadie – joined the Treasure Valley Down Syndrome Association. “We meet other moms [and dads] who have the same circumstance in life as us, so they’re like family.”
The children all likewise bond. “The kids embrace one another. It’s almost as if they know,” Larriba said, meaning it’s like they all know their commonality is Down syndrome – and for them, it is most definitely a commonality, not an abnormality.
Sadie the hugger enjoys meeting other kids with Down syndrome. Said her mom: “We’ll be in Costco and Sadie will see another child with Down syndrome and she’ll go up and hug them. To me, they’re so filled with love.”
October is Down Syndrome Awareness Month, and an annual feature named the Buddy Walk takes place in the autumn month. This year the event will be held from 10:30 a.m. to 1 p.m. Sunday, October 16, at Indian Creek Plaza in Caldwell; however, this year, for the first time, the name of the program is changed from Buddy Walk to Step Up for Down Syndrome. “We’ll have a mile-long walk, and at the plaza we’ll have lots of entertainment, including the local ’80s tribute band, Casio Dreams,” said Larriba.
Sadie’s blessings to her parents include major changes in both their individual lives and their lives as a married couple. Her mother explained: “Sadie is everything I could ever ask for in a child – and more. I feel God created her just for me; she’s healed me.
“I didn’t have the best childhood, and God knew my heart needed a lot of healing. He used Sadie to do that. She is the most incredible gift. … On the heels of a bad childhood, my husband also struggled. His first wife had abandoned him while he was in the military overseas, and my first husband committed suicide. God brought us together. We are now best friends – and we also have Sadie!”
What is the biggest challenge in parenting a daughter with Down syndrome? “I think the biggest challenge is people putting Sadie in a disability box – doctors, teachers, other parents.”
Larriba is discouraged by facts such as, if children with Down syndrome need an organ transplant, they are last in line behind “normal” children. “They don’t treat them equally,” she said.
The Larribas fight for their daughter and for the children of other parents as well. “We advocate wherever we go,” stated Steffanie. Both she and her husband consider advocacy their most valuable mission in life, and that fight will continue life-long for them as well. As Sadie grows and encounters her teen years, her twenties, and her adult years, her parents will be beside her, giving her encouragement, and still doing advocacy work.
“I want to instill in her that she can do anything. I want her to drive, work, go to college,” her mom said.
Sadie started preschool in September, and she is also homeschooled as well, so it’s a hybrid educational process for her.
Larriba’s book is doing well. “I hear from moms all over the world, saying it encourages them,” she said. “They also say it’s their kids’ favorite book, which surprises me.”
At the beginnning of this story, only half a question was answered: that Larriba would tell the mother of a child with Down syndrome “Congratulations.” But what about the advice she was asked about? What else would she tell that new mom?
“After ‘Congratulations,’ I would also say, ‘God knows what you need and what you’re capable of doing, and He will give whatever you and your child need’.”
In Larriba’s view, all parents can take comfort in this fact: God doesn’t make mistakes.