In 2016, Babett’s daughter, Joriale, passed away from LQTS. This year, her book about her family’s journey was published – helping Babett spread awareness in honor of her daughter.
In January of 2016, my daughter, Joriale, passed away from Long QT Syndrome. Nine months prior, in April of 2015, she had a Sudden Cardiac Arrest at work. They thought she was having a seizure at first, and once the activity stopped, they checked her pulse and there was nothing. They started compressions and called 911, and the hospital thought it was a seizure, too, at first – and then she coded in the hospital, and they started looking at EKGs, doing more cardiac workups, and discovered LQTS.
I started writing this book, Choreography of Grief, about a year after she passed away. I’d been journaling, and decided that in this process I could make a book. During the time I was writing, I took a job as a chaplain for hospice. I was with people who were grieving every day, and that was a stepping stone towards moving the journal entries into a book. I’m very blessed to have friends who are authors who really encouraged me, and when the pandemic hit, I saw families who were grieving and couldn’t be with their loved ones, and couldn’t have what’s considered a normal memorial service – I walked with them through that process, which became a catalyst for writing this book. I wanted to write it as a vehicle to raise awareness about SADS, to tell our grief story, and connect with others who are struggling with grief.
The grieving process is very individual. Even family members in the same family, who are grieving the same loss, experience grief differently. If you’re struggling with grief, my advice is to acknowledge that your grief is unique to you. You have to find the process for you. I also think bereavement counseling is a wonderful tool.
After Jori passed, we made a list of history in our family that – looking back – we can see were likely symptoms, but were explained away when they happened. I know other families who have experienced this, and might still feel like they don’t have answers yet.
I am donating part of the proceeds to the SADS Foundation because the amount of information and support they provided to us personally, and that I see through their online presence. They are so beneficial to families trying to process all this information after a diagnosis or death. If you’re looking for answers, I hope you’ll turn to SADS to find your next step – whether it’s talking to your physician, or finding a specialist. Information doesn’t stop you from grieving, but information is powerful in helping us process.