‘Most wonderful child in the world’ will light up New York
by Jane Graves OLATHE — When Prince of Peace parishioner Jill Boster couldn’t resist taking a picture last spring of her nine-month-old Alexa in her swimsuit and sun hat, little did she know it would wind up in lights — literally.
But Alexa’s picture will indeed be lighting up Broadway (or almost) as part of a video montage in New York City’s Times Square Sept. 30 in honor of National Down Syndrome Awareness Month during October and as part of that city’s Buddy Walk festivities. Hers was one of 215 images selected from more than 2,500 entries.
The purpose of the video production is “to show that one with Down syndrome is capable of working, playing, learning, interacting with friends and family,” said Sarah Schleider, vice president of marketing and communications for the National Down Syndrome Society. “The mission is really to promote their acceptance and inclusion by showing all of their abilities.”
It’s a message that needs to be heard. Studies have shown that when Down syndrome is indicated after prenatal screening, around 90 percent of those pregnancies end in abortion. Mothers older than 35 are statistically more likely to conceive a child with Down syndrome, and it is standard for those women to receive pre-natal testing. However, almost 80 percent of children with Down syndrome are born to women younger than 35.
The American College of Obstetricians and Gynecologists recommended in January of this year that all pregnant women, regardless of age, should receive prenatal screening, raising the question if this will result in even more abortions of unborn babies with Down syndrome.
It’s a concern for many people, including the Bosters.
“We know how we felt in the initial shock of, ‘Oh my gosh, she has Down syndrome.’ So it’s really sad to think a parent is feeling that way and decides to abort their baby just because they don’t have the education or the background to know that children with Down syndrome are wonderful children,” said Jill.
The first few days after Alexa’s birth were trying, said the Bosters. Jill had not received prenatal testing (she’s 30), but there had been concerns because Alexa was measuring small for her due date. Down syndrome was diagnosed after Alexa was born.
“It was really difficult,” Kirk said. “The hardest part, for me, was that I was just upset with myself for how much I was struggling or how much I was grieving about the whole thing. I kept thinking to myself, ‘You’re a better person than this.’”
The Bosters had talked prior to Alexa’s birth about special-needs children and had agreed they they would unconditionally love whatever children they were blessed with.
But as Jill explained, “You’re never really thinking it’s going to happen to you. And when it does, it’s just the initial shock and trying to figure out how your life will be different.
“Everyone, of course, knows their life will change with having a child, so then if you have a child with special needs, it brings on a whole other set of issues.”
The day after Alexa’s birth, the hospital social worker arranged for a visit from another couple who had a child with Down syndrome. The family was also Catholic, and their daughter was going into kindergarten as the first child with Down syndrome to attend Holy Cross Elementary School in Overland Park.
Kirk said that this visit was “an early turning point” in their journey. The other couple’s enthusiasm about their daughter’s accomplishments, as well as their witness of faith, made a real difference.
Support from their family, friends, and church has helped them continue to deal with obstacles, the Bosters said, particularly with Alexa’s ongoing medical issues. She has had therapy appointments up to three times each week and doctor appointments several times each month, as well as open heart surgery in June.
Challenges such as these meant an adjustment in expectations for the Bosters.
“It was just a matter of creating a new vision and realizing we still have those hopes and dreams for our daughter — they just may be a little bit different than what we had originally thought,” Jill said. “The same can be said for any child. Every parent has ideas for what their child is going to be like, and the child is going to be what [the child] wants to be.”
Kirk said their current perspective makes it tough to look back and remember how they felt right after Alexa’s birth.
“It’s difficult for us look back at that time in the hospital, because she’s been with us for a little over a year now, and she’s brought us so much joy. She’s such a wonderful kid.”
“She is the easiest, best, most wonderful child in the world,” agreed Jill. “The biggest sweetheart. We’re so blessed.”