“Helena was in the NICU, and a social worker handed me a business card with Northwest Center info on it,” Lisa says. “By the time Helena came home from the hospital, we'd already met with our new team in our home and had formed a plan. She started therapy at three weeks old.”
Today, Helena is an energetic preschooler who loves books and music”one of the dozen words she says regularly is a request to watch a popular musical TV show: “More Glee, please!” But at her birth, “We didn't know what to expect, to be honest,” Lisa says. In addition to Down syndrome, Helena had severe hypotonia (low muscle tone), enlarged tonsils, and a heart defect known as atrioventricular septal defect (AVSD).
“Her first year of life was all about just breathing, just maintaining enough to stay alive,” Lisa says. “Her airway was so floppy it’d flop in on itself. That combined with the huge tonsils made everything exhausting, and she wasn't strong enough to position herself [to breathe easily]. No zero-to-one-year milestones were met until after she turned 1.”
No Stopping Her
Helena finally met those milestones thanks to her own determination, her parents’ encouragement, and the support of the Northwest Center Early Intervention team. Therapist Diane was a regular presence for the first three years of Helena’s life, with occupational and physical therapy helping her eat, develop motor skills, and communicate through speech therapy and sign language. Because Helena’s compromised immune system left her susceptible to illness, therapy took place at home rather than at a preschool with other kids.
“Helena had one-on-one time with her teacher, which was awesome,” Lisa says. “She's gone from relying on her feeding tube to eating almost all of her food orally. Her torso, arms, wrists and hands are still fairly floppy, so concentrating on fine motor skills is tough. She can pull things apart, but pushing things together takes effort. She's learning to draw. She’s enjoying helping us in the kitchen with pouring and mixing. She’s also grown to love stacking blocks.
“She’s fiercely determined,” Lisa concludes. “Once she sets her mind to something, there is no stopping her.”
That’s something Lisa and Joe suspected before Helena was born, when they were still struggling to come to terms with test results that indicated the likely extent of Helena’s disabilities. “Ultimately these would be Helena’s circumstances, her life to deal with,” Lisa says. Joe, a scientist who builds and rides bicycles, worried he and Helena would have nothing in common. Lisa wondered if Helena would appreciate art or music. So Lisa began to meditate, asking her not-yet-born daughter questions about the life the family might share.
“What about bikes?” Lisa asked one session. “Are you and your dad going to be able to ride bicycles together?” Lisa says she then felt Helena’s presence and heard her voice. “She said, ‘I don’t know, Mom, but if you want me to know how to do something, you're going to have teach me.’ And as soon as I heard that, I saw them building bicycles together.”
Luck, Love and Learning
Helena’s first three years have had their challenges, but also wonderful surprises, both parents say. “We didn't expect her to be so social and charming. We didn't expect her to have such a gloriously rebellious sense of humor,” says Lisa. “We didn't expect her to love books more than toys. We didn't expect her to love music more than playgrounds. We didn't expect her to love fresh fruit way more than cookies, cake or crackers. Of course, we didn't expect for her to be three years old and unable to walk on her own, but you can't win ’em all, right?”
Then she adds with a bit more gravity, “We also didn't expect to be so in love with her. I get to be her mom. Joe gets to be her dad. We feel like the luckiest parents in the world.”
Joe and Lisa plan to encourage Helena to follow her dreams, and jumped at a recent opportunity to introduce her to a star from her favorite show: Lauren Potter, an actress from Glee who just happens to have Down syndrome. “You read more and more about people with Down syndrome who have their own clothing lines or own their own restaurants or who are classroom teachers or writers or motivational speakers,” Lisa says. “It just gives us a lot of hope that Helena will have more opportunities.
“We love her so much and just want to give her the best life we can,” she continues. “With all of her health issues, we would have been at a total loss without our Northwest Center team. Here's the thing: they came to our home. They worked with her in our living room and in our kitchen. We quickly came to trust them implicitly, and to rely on their guidance. What they taught us is invaluable. They made it possible for us to learn on a weekly basis how to help Helena reach her goals and cross the milestones. To be able to help her learn and grow, and because we needed help too, that's what Northwest Center has done for us. We'll always consider them to be part of our family.”