Jaclyn was born on May 6, 1996 with a full head of brown hair and navy blue-colored eyes. My husband, Alan, and I took our beautiful daughter home from the hospital, full of excitement and expectations for the life she would have.
At one month of age, after struggling to gain weight and some labored breathing, Jaclyn was diagnosed with Complex Congenital Heart Disease and was hospitalized in congestive heart failure. We learned that she was born with multiple heart defects -- pulmonary atresia, transposition of the great arteries, and a complete AV septal defect. In a matter of hours, Alan and I were thrust into cardiac anatomy and the complexities of Jaclyn's heart anomalies, as well as meeting the surgeons who would perform the first of many surgeries to repair her heart.
The first few years of Jaclyn's life were full of medical procedures, multiple surgeries, various illnesses and other unforeseen obstacles. But through it all, Jaclyn's spirited personality developed. She was bright, curious, sweet, silly, interested in learning, and fascinated by the world around her. As a toddler, the surgeries were more spread out, but the need for adaptive therapies began - speech therapy, physical therapy, and occupational therapy. If Jaclyn's hands or body couldn't perform certain tasks, she found ways to adapt. Her desire to be academically challenged also started as a toddler and continued throughout her life. Books, music, workbooks and board games dominated our play time, as I stayed at home to care for her. School was a place where Jaclyn excelled and blossomed socially. Even though she couldn't participate in all the activities as her peers, she didn't let it bother her. Her interests grew and her pursuits broadened.
Jaclyn knew her heart didn't grow the way it was supposed to grow. But she never thought of herself as "sick." Surgeries, medications and numerous doctors' appointments did not deter her from having a "normal" childhood. Other than being petite and in need of daily medications, she was treated like any other child. No one could tell by looking at her just how much she had been through. She sought out and conquered various endeavors, oblivious to how others viewed her. Emphasis was always on the positive - never on her limitations. Despite nine surgeries in ten years, she danced, sang, played with her younger brothers and friends, read, bowled, mini-golfed, swam, blasted music throughout the house, shot hoops, cheered for sports teams, collected snow globes, key chains, and bookmarks, made crafts, played piano, completed puzzles, helped in the kitchen, giggled, performed in school shows, played darts, pool and air hockey, attended Hebrew school, and mastered every board game imaginable. She found ways to have constant fun and she touched everyone who knew her. She never let things stand in the way of laughter, love, or a good time.
One of Jaclyn's favorite songs from the musical Wicked was "Dancing Through Life." She listened to it all the time. And that's exactly what she did!
Jaclyn's Journey demonstrates how one child could triumph in the face of illness and not let it slow her down. It focuses on how life sometimes forces individuals and families to deal with circumstances they never thought imaginable. Rather than letting her heart condition dictate her life, this story chronicles how Jaclyn continued to have a dance in her step. No matter what curve was thrown in her path, there was always a dance in her step.