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
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
On Aug. 16, 2006, Jaclyn and her two younger brothers went
to an amusement park for a day of fun. While there, Jaclyn
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,
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