Even before she delivered her second child via caesarean section, Tracy Umezu knew that baby Charlotte would be having medical issues. Born with a critical condition, the baby had to be taken to a higher-level hospital for immediate treatment, three minutes after Tracy was allowed to see her. It was only the following day that Tracy and her husband could see their newborn baby.
After several weeks of observation, Baby Charlotte was found to be having 400 seizures a day, and a diagnosis was made three months after that she was suffering from severe SCN2A, a condition where the brain is not able to use sodium appropriately.
However, the family chose to see the joy in the sorrow and the chaos.
Since they do not know how long will Charlotte stay with them, the family decided to fill all her days with as much happiness as possible. They started “Seize your Joy,” a ‘joy list’ of activities for Charlotte to experience.
They were able to check off from the list experiences such as Charlotte finishing a marathon while Tracy pushed her stroller, go kayaking, visit Hawaii and play on its beach, and others.
“We wanted Charlotte to experience as much as she possibly could and didn’t want her to have any limitations. Many families would not have taken Charlotte to Hawaii, but we did. It was a fantastic trip, and we did not want her seizures to define her. It was an amazing trip, and we did not want her seizures to define her. That’s what who she was—she seized –so we didn’t let that stop us from living life with her,” Umezu shared.
They also found joys in small things which were not on the list like when Charlotte moved to the big bed from the crib and Umezu could lie with her daughter in the hospital.
“Joy comes in many forms. Even when times are as bad as they can be, you can still find joy in little things,” Umezu said.
Though Charlotte already passed away last November 29, 2016, the Umezu family vowed to continue and turn Seize Your Joy into a non-profit activity.
Every month, the family will do “a different joy” such a taping dollar bills with a card sharing Charlotte’s story around Target and collecting toys for the underprivileged children. They are also giving out ‘joy boxes’ containing toys which are tailored to the kids in hospitals and families of parents with cancer, along with comfy sheets to make hospital beds warmer.
The family is checking off more things on the joy list even if Charlotte is not around anymore.
“In the turmoil the world is in right now, and all the sadness people experience in life, we want to help people realize that joy is there,” Umezu said.