In 2002, Eric and Melissa Marohn of Downers Grove, Ill., anxiously awaited the birth of their firstborn child. But when the moment came— a moment reserved for the most joyous of life experiences— they realized something was terribly wrong. Excitement turned to fear of the unknown, and they waited, all the while cherishing their fragile daughter, Ella, and surrounding her with love. It didn’t take long for a diagnosis: Ella had Trisomy 18.
According to the Trisomy 18 Foundation, the condition is the result of a chromosomal defect and is associated with severe medical complications. Only 10 percent of children with Trisomy 18 survive until their first birthdays, but those that do can enjoy many happy years of life.
The Marohns lost Ella in August 2007, just after her fifth birthday. Eric and Melissa, along with Ella’s younger brothers, Luke and Gabe, remain involved with SOFT, the Support Organization for Trisomy 13, 18 and Related Disorders. But the way in which they helped Ella live her life, and their continued celebration of their daughter, is the essence of grabbing the good. When faced with an unplanned journey, we can all learn from this extraordinary family’s approach.
Secure the foundation
In the first few days after Ella’s birth, Melissa and Eric were scared and grieving the loss of their initial dreams for Ella, while dealing with her likely imminent passing. But Ella surprised her doctors and refused to give up. “At some point, we made a pact that this would not beat us,” Melissa says. “That same day, we demanded to leave the hospital. We wanted memories with her, not knowing what the outcome would be.” Their decision to stay strong, stop waiting and start living was instrumental in creating a life outside the hospital.
Daily meals, visitors and supportive family and friends filled Ella’s early months. “We decided to share her instead of hunkering down and waiting for her to die,” says Melissa. While it came naturally to Eric’s family to jumpstart Ella’s life experiences, it took a bit longer for Melissa’s relatives. “But before long, we were all like, ‘We can do this!’” she says. Accepting support from others made it easier for them to focus on their little girl.
Live it up
Not only did the Marohns share Ella, they exposed her to countless life experiences. They took her on trips, visited Chicago’s famous Billy Goat Tap, let her “play” on stage with a jazz band and had an entire restaurant sing Happy Birthday for her six-week celebration. Eric even taught his baby daughter to drive— backing up and down the driveway— ensuring they both experienced this important milestone. Every moment of Ella’s short life was a celebration. But there were dark moments, too. “We realized quickly that we weren't cursed, we were blessed,” Melissa says. “I think the darkness was just more knowing we would outlive her.” When they felt that darkness, they turned to their faith, their support system and each other.
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When Ella was 10 months old, her family attended their first SOFT conference. This was life-changing for Eric and Melissa, who experienced being ‘just like everyone else’ for the first time in months. “People said things like, ‘She’s gorgeous! She’s so big! She looks great!’” Melissa says. “We felt so at ease.” They currently participate in SOFT’s Bereavement Committee and provide support to families dealing with the diagnosis of Trisomy 18.
Each summer, the Marohns host their “Ella Bash,” inviting friends and family to celebrate their daughter and her life. Attendees eat, drink and catch up while looking through photos and recalling stories about Ella. As an honored guest, I can assure that when we leave, we’re inspired to live better, fuller lives. To focus on what’s important. To let the small stuff go.
The way Melissa looks at the family’s time with Ella is an inspiration to anyone dealing with adversity in life. When asked about it, here’s what she had to say:
“Actually, when I think of our situation, I really don't think of our ‘Trisomy journey.’ I think of our ‘Ella journey.’ Ella, the little girl who wasn't supposed to live. Ella, the little girl who pruned our friends, and made new ones for us. Ella, the little girl who made our sons more compassionate kids. Ella, the little girl that made me a better person, in every aspect of my life. For some reason Ella doesn't make us sad, even now. We will see her again, and I can't wait to talk to her!”
Molly Logan Anderson is a writer, wife and mom of three who lives in the Chicago suburbs. Intent on finding good in every day through her blog and website www.GrabTheGood.com, she hopes to help others do the same. From good family, to good advice, to good causes and good humor, Molly is writing about it.