Jacob Spenadel arrived Dec. 29, 1998, a special 6-pound, 10-ounce delivery for parents Joel and Beth. It was love at first sight, of course, for the baby boy who would join older sister, Hannah, to make a dream family complete.
“He is a blessing in our life,” Beth says.
Joel and Beth knew months before that their baby-maybe a boy, maybe a girl-might be at risk for Down syndrome, but resisted what Beth describes as incredible pressure from doctors to do more testing to confirm it.
After all, Beth says, the testing wouldn’t change anything in their hearts-they would keep their baby no matter what. “If it was going to be, it was going to be,” Beth says. Still, the results of the routine alpha-fetoprotein blood test and an inconclusive Level II ultrasound hung over them.
They decided to keep the possibilities to themselves, telling only their parents what might be. “We kind of just decided to prepare,” Beth says. An educator by background, Beth says it helped to have an inkling of what life would be like if their baby had Down syndrome. “I just wanted to have a healthy baby,” Beth recalls.
But after delivery, Beth barely got a chance to see Jacob before hospital staff whisked him off to join the tiny premature babies in the Neonatal Intensive Care Unit. “… The health complications just kind of overtook everything for me.” Jacob arrived not only with Down’s, but with three holes in his heart. He spent his first 12 days in the hospital and his first month on oxygen.
Over the years since, two of Jacob’s heart defects have closed on their own and the third is shrinking. He’s happy and healthy. Through it all, the Spenadels of Glen Ellyn consider themselves lucky. Lucky to have made contact with the National Association for Down Syndrome based in Chicago before Jacob arrived and to have been assigned a parent support person who had been in their shoes. Lucky to have found other resources to help Jacob thrive. Lucky to have found support for Jacob, themselves and Hannah, in a community of people who know just what it’s like to have people stare and ask difficult, sometimes upsetting, questions. Lucky to have a “delightfully tender” 8-year-old, who walked at 26 months, who still likes to snuggle with Mom, who has become a ham to an audience for his jokes and who has made the most of opportunities, including attending the same elementary school as his sister.
Hannah, now a 10-year-old fifth-grader, and Jacob’s relationship is beyond special, Beth says. “She’s a defender, a protector and a teacher, and she’s a sister.” There is a place for everybody in the community, Beth says. “They’re just starting on a journey that is different,” she says. “But it’s not necessarily a bad place to be. It can be a scary place for a parent, but it can be a very exciting place, too.”
So why am I telling you about Jacob and his family? Jacob is among 32 children in our area featured in the Quest for Independence photography collaboration between Easter Seals and the College of DuPage Photography Department. The families opened their lives to the student photographers so you could better understand that Jacob and the other children are just that, children, not a disability. We have picked a few of those photographs to share with you this month. I know you’ll find them as heartwarming and beautiful as we do. Click here to get to the story…