In 2013, I founded ’Ohana Oasis—a non-profit organization that provides weeklong retreats for parents who have experienced the death of a child. And as you may have already guessed, my child died too. Her name was Alison Belle, and I lost her to a brain tumor at the age of five.
I absolutely adored being Alison’s mom. I realize all parents say this about their children, but many people adored my Alison as well; there was just something special and captivating about her. I really do believe she was given a gift of magnetism, because her short life touched so many, even though her work on this earth was only meant to last five years. She wasn’t a saint—just a normal kid. Still, I’m so amazed I got to be her mommy and share in those five wonderful years.
Does this diminish the agony of watching her daily suffering, wondering if she would ever make it to adulthood? Did it take away the engulfing, soul-wrenching grief when she did die? Did it fill the void I felt each and every day when I could no longer hold her in my arms, talk with her, or tend to her many daily needs as a critically ill child? Absolutely not. The grief of losing a child cannot be adequately described.
If you can, take two minutes to imagine your child has died. Visualize telling your friends and family, planning his/her funeral, and feeling the weeks of despair and numbness that follow. Move on to the holidays, and what would’ve been your child’s next birthday. Now fast forward a few years: Other families have moved on, their children continue to grow, but your child still isn’t around to learn how to ride a bike, eat Thanksgiving dinner, or watch fireworks on the Fourth of July.
Okay, come back to reality. And while you’re at it, take a moment to go hug your kids, and appreciate getting annoyed with them, and finding excuses to sneak off for a few minutes of welcome silence.
But remember the feeling of losing a child—that’s what parents carry with them. Not for six months or a year, but for many years. And when we finally begin to emerge from the fog and regain enough energy to realize that life does go on, that there are still things to do and discover and maybe even enjoy—we feel guilt. It’s a guilt that comes from finding joy in something without our child, and that our child can’t be here to enjoy it with us. We want to make sense of our loss, but also never diminish our child’s life and presence in our hearts.
One day, while on vacation on Kaua’i, I woke up eager to “go play.” I was excited to take a bike ride and maybe even do a little snorkeling. I reminded myself I was on vacation and therefore had permission to do nothing—but even after that reminder I had the energy and eagerness to explore. It wasn’t until the end of the day that I realized I hadn’t had this type of energy in eight years.
Over the course of those eight years since my daughter’s death, I had wonderful people and resources helping me navigate my way back to a purposeful and joy-filled life. And then, in what I firmly believe came from something beyond myself, I got the vision of a place where parents like me are given the tools, space, and, most importantly, the safety and permission to go to the depths of grief—while also exploring the heights of the amazing things life can still hold; the joy that can still arrive, where we begin to explore our purpose(s) in life.
’Ohana Oasis was born out of this vision. The organization provides a weeklong retreat on the island of Kaua’i for eight parents at a time. And by “provide” I mean all expenses are paid, and all arrangements are taken care of, including the activities, which are designed and executed for the parents. Part of the experience is to feel loved and cared for, to have a worry-free week that’s solely focused on creating space for healing, having fun, and connecting.
During this week we honor the past and memories of our children. We do things to celebrate living in the moment, while exploring ways to embrace the future. Along the way parents make beautiful connections with their partners, the other parents, and the island itself. We go on field trips together, do arts and crafts (yep, just like summer camp), and share meals. There’s also plenty of time for everyone to go out and do their own thing.
Creating the format of this retreat came from reflecting on my own healing process: what I did, what worked for me, what didn’t work. For example, while support groups are the perfect resource for some, for me—and for a variety of reasons—the idea held zero allure. I’m an introvert and prefer peace and quiet to process my feelings internally. That’s why I can certainly understand and accept if the ’Ohana Oasis model doesn’t resonate with all parents. It’s okay, because I just feel so overwhelmingly blessed to be a part of something that can bring healing and joy to some parents. ’Ohana means family, and I’m eager to continue providing the experience to all who can and want to become part of our ’ohana.
I am so glad Alison chose me as her mommy. And even 12 years after her death, I can see an ever-growing impact that her life continues to have on others.