When our daughter was born, my husband and I had dreams and expectations of what her life would be. As first-time parents, we imagined providing her with every opportunity and having a great life. But one month later, our lives changed with Jaclyn’s diagnosis of complex congenital heart disease. We did not know then that we would be embarking on a different journey, with unforeseen bumps along the road.
By the time she was 10, Jaclyn underwent nine surgeries to fix her heart. Recoveries were brutal, often requiring weeks in intensive care, followed by more weeks of healing at home. But each time, she bounced back.
Over the years, we met many families in similar shoes. We saw the physical, psychological and even financial aspects of their child’s illness or disability consume some parents. Consequently, their children often did not have opportunities to enjoy “normal” childhood experiences or memories.
But Jaclyn didn’t live that way. She didn’t think of herself as “sick,” although she knew her heart didn’t grow the way it was supposed to grow. While there were definitely things her peers did that she couldn’t do, she didn’t let anything stand in her way. Certainly there were times when an illness or surgery took center stage in our life and in Jaclyn’s life. These times often required our family to operate in what I call “medical mode.” But between treatments, procedures and recoveries, Jaclyn was able to live a normal life. She taught us many lessons about how to live fully, despite her medical condition.
Jaclyn reminded us to be comfortable with ourselves. For instance, she could have been self-conscious about her numerous scars, but she wasn’t. Instead, she realized they were simply a part of her-she knew no other way of seeing herself. When kids teased her about her petite size, she learned to say to them, “It hurts my feelings when you call me names.”
Moreover, Jaclyn was never embarrassed to ask for help when there was something she couldn’t do on her own. At an early age, she noticed her friends could run faster, jump higher, bike without training wheels and swim farther. But instead of shying away from interacting with peers, she found ways to be successful in other endeavors.
While her friends played soccer and softball and swam on teams, Jaclyn focused her energies on professional sports. She could rattle off the Cubs roster and checked the daily newspaper to see who was pitching each day and whether the team had won the previous day’s game or not. In addition, she mastered every imaginable board game, developing strategies for each one. Games and crafts were things she was good at, so she focused on these things rather than dwelling on what she couldn’t do.
Jaclyn never let an experience pass her by. For instance, she entered every coloring and essay contest she could find, winning many over the years. When she heard a good joke, she wrote it on a scrap of paper to remember later. She often coerced us to play games of Hangman on restaurant placemats while waiting for our food. We could always count on her to bring a slew of CDs in the car because she loved to sing. And she often blasted music in the house and the backyard so she could dance around.
She knew she would miss all but one day of Spirit Week at school because of an upcoming hospitalization. This was the week to wear a different themed outfit each day. So she decided to wear all five days of outfits in one. She strutted into school decked out in pajamas, crazy hair, Hawaiian leis, hippie attire and sports paraphernalia. She didn’t want to miss out on anything.
Jaclyn taught us how to live fully by compartmentalizing her heart condition. She showed us every day that she was so much more than her medical diagnosis. When she felt up to it, even IVs and oxygen canulla in her nose and being stuck in a hospital bed didn’t deter her from belting out words to her favorite songs or challenging nurses or visitors to a quick board game. She demonstrated that a little bit of fun and laughter can go a long way in helping to heal.
Jaclyn adapted her play when necessary. It was important to her to be included in social interactions with friends. When she couldn’t run around the school playing tag during recess, she gathered a group of friends to color the blacktop with chalk instead. Since she couldn’t swim in the deep end of the pool because she wasn’t strong enough, she brought water toys to toss to friends. That way she could still play with them although in a slightly different way. She couldn’t join her friends in their dance for the school talent show because she wasn’t cleared to raise her arms above her breastbone after surgery. Instead she danced a solo in front of 400 people, 27 days after coming home from open-heart surgery. She received a standing ovation.
Another lesson Jaclyn taught us was that she had a right to medical information as long as it was age-appropriate. Jaclyn knew her heart didn’t develop normally. Over the years, her questions changed from “how long will I be in the hospital?” to “will I be on a ventilator?” She could sense from doctors when another procedure or surgery was needed, and she deserved honesty, in terms she could understand, without frightening her. When she was 9, we even included her in part of a medical consultation. She held a pacemaker in her hand and asked the doctor questions about what would be involved. This made her feel somewhat empowered, and we know she appreciated it.
Finally, Jaclyn taught us the importance of strong advocacy. We knew that someday she would be responsible for her own medical care. That is why it was crucial for her to learn, among other things, the names of her medications and their dosages. Nurses used to laugh when Jaclyn could spell the names of her medicines when they could not.
Jaclyn taught us that illness does not have to consume a child’s existence. She deserved a chance to live fully and not let her medical condition define her. She was able to live a life full of laughter, fun, normal experiences and love. She danced through life! Perhaps others can learn from this journey and from the valuable lessons she taught us.
For 10 years Jaclyn lived a full life, even as more surgeries and procedures were needed. She underwent two open-heart surgeries, as well as the implantation of a pacemaker during spring 2006. However, that didn’t stop her from excelling in school, bombarding family and friends with requests to play games, making projects and even mastering tasks that had previously eluded her abilities.
On Aug. 16, 2006, Jaclyn and her two younger brothers went to an amusement park for a day of fun. While there, Jaclyn collapsed.
Her heart simply stopped.
Our lives haven’t been the same since losing our girl that day. We miss her intensely and we strive to keep her memory alive. Her life touched many and for that we are very grateful. Three and a half years after her death, Jaclyn’s life inspired us to have more children. We now have twin girls. They will grow up hearing about the sister who would have adored them and about how she danced through life.
Lori Kaplan is a mom living in Arlington Heights and the author of her daughter’s biography, “Jaclyn’s Journey: Dancing Through Life in Spite of Chronic Illness.” For more on the book, visit jaclynsjourney.com.