I live in arguably one of the best places on earth, leading a pretty satisfying life…good friends, work with a purpose, playing in the ocean several days a week, and beautiful views right out my door. But it’s only through losing absolutely everything that I eventually made room for this life.
Growing up I never once thought, “I want to dedicate my career and time to growth through grief.” Instead I spent my childhood yearning for the golden era of adulthood. I foolishly thought that’s when I’d finally be in control of my own destiny. As an only child of divorced parents, all I ever hoped for was a family of my own with a handful of kids. For the twenty-two year old version of myself, marrying a man and inheriting three-step children all aged six and under, whom I loved as my own, actually seemed like a good idea. Four years later, I gave birth to my one and only biological child, Alison Belle. How’s that for a big family to call my own? This is when I knew I was finally living my dream.
After a year of multiple hospitalizations for pneumonia when Alison was three, the ultimate diagnosis came. She had a tumor in her brain stem, virtually paralyzing her vocal cords – causing the bouts of pneumonia. Two years later Alison died in my arms.
It wasn’t like the movies where the family is hovering over someone dying and you hear a final gasp, knowing that was the final breath. For me I was holding my already comatose daughter in my arms in the passenger seat of our SUV bombing down the mountain as quickly as possible clinging to the hope of getting her home before she died. Hoping against hope for another breath as I listened intently. When the pauses lasted too long I gave her mouth-to-mouth, wanting to know I’d done absolutely everything to keep my daughter alive. Slowly my desperate battle slipped into recognition and acceptance, finally followed by my tight hug and the words, “I love you Alison and if it’s your time to go it’s okay. We love you and always will, but it’s okay to go. We’ll be okay.”
Eight years later sitting on my hotel lanai drinking coffee and planning my adventures for the day, it struck me. I was okay, better than okay. I felt 100% excited and energized to take on the day. There was no sadness, lack of energy, or hesitation. I was living life fully and knew my purpose.
During those eight intervening years my life had disintegrated in every imaginable way, only to be rebuilt into something unrecognizable. In the span of a few short months after Alison’s death my marriage had fallen apart. I went from being a wife and stay-at-home mother to four children, one of whom was critically ill, to a childless single woman putting herself through a full college course load while working full time.
From the beginning I recognized both the daunting challenge and unique opportunity handed to me. It’s not every day someone is given a blank slate to virtually recreate her life. I knew what I didn’t want…to be defined as a grieving mother or divorcee. Who I did want to become was yet unknown, as was the enormity of the task ahead of me.
I am a seeker, an introvert, and a thinker. In my journey through grief I picked up many books, most of which were not about grief specifically. I knew from the beginning I wanted this rupture to be about so much more than my grief. I wanted it to be a game changer – a life changer in a positive way. Since I was handed such a shit sandwich, it should be the catalyst for growth and change. I needed it to be the defining moment where I’d look back and see I’d chosen the path of wholeness, happiness, and purpose.
When I made this decision I didn’t have those words. It wasn’t yet articulated in positive forward thinking. Instead I thought and felt viscerally in terms of what I didn’t want….
“This will NOT define me!” And “I have a dead daughter, but I am not just a bereaved parent.” And finally, “I am divorced, but I am not a divorcee.” I knew I wanted to accept and integrate my life experiences into the fabric of my being, but didn’t want them to be all of who I am or how people saw me.
It was in this spirit I went on my own journey. It was often an intentionally solo mission. Because every external marker of my life had been stripped away, I feared if I aligned myself with any particular group with a shared story i.e. bereaved parent or divorced, I’d latch onto that as my new identity. It would’ve been easy, but it felt like a way for me to short circuit doing the hard work of getting to know the entirety of me.
Over the years I accessed so many different tools, resources, and modalities for healing and growth. Some of them were traditional and some of them were a little “out there”. Besides my grief and growth work, I kept busy with moving my life forward. I graduated with a degree in political science, scored my dream job as director of government relations for the American Cancer Society, bought a house on my own, and built out a circle of new friends. Something was still missing.
In a truly serendipitous fashion, the vision to offer retreats for bereaved parents unfolded for me. I’d learned through trial and error what worked for me. I’d collected a quiver of tools and wanted to make them available to any other parent who, like me, wanted more from their lives.
I established ‘Ohana Oasis (‘ohana means family in Hawaiian) with the founding mission to create a week of peace and restoration, a safe space for parents to rediscover joy and purpose in life after the death of a child. In 2015 the first retreat was held on Kaua’i. It consisted of a unique blend of individual work, facilitated time with other parents, and playtime. The permission to play and adventure was as important as the work. I had no idea if my grand vision would resonate, if these couples, none of whom I knew, nor knew each other, would gain anything from what the retreat encompassed. Truth be told, the offer of an all expenses paid trip to Hawai’i for a week was probably the biggest selling point. What they received was so much more.
Sure, it was a magical week of helicopter rides, bonfires by the beach, and massages. It was also mornings full of deep dives into honoring their past, tools for living in the moment, and finally visioning into their unknown, yet infinitely possible futures. The parents went home changed people. It wasn’t just Kaua’i that did it. It was the curriculum they walked through.
What I’ve found time and time again working with parents from around the nation is, only another parent in the club can gain full trust when offering tools to parents. It’s a legitimate case of, “Until you’ve walked a mile in my shoes you can’t tell me…”. I feel this so deeply I take great care in acknowledging that while my own five-year old daughter died, the grief of losing a child is through my own lens. I can only hold space for you to walk your own mile and point out which shoes and gear worked for me.
I did the work, and continue to do the work. It’s been close to twenty years since Alison died, so I have the benefit of distance and hindsight. I’ve got the privilege of having worked with diverse groups of other parents who’ve lost children at all ages and any number of ways.
The stories I share and the activities I offer aren’t for everyone and that’s okay. I don’t pretend I have the silver bullet answer for every bereaved parent. I know what worked and what continues to work for me. I’m sharing it with anyone who wants and needs to hear it, to use it. I trust you’re reading this for a reason. I also trust if it isn’t for you now you’ll stop. It may or may not find its way back in front of you in the future ;).
You haven’t stopped reading yet, so I imagine you’ve been dealt one of the worst hands a parent can receive. And somewhere underneath the mountain of pain and anguish you feel a yearning, the desire to live a life with meaning, with joy. You’ve got a spark of hope that your current situation can be your own catalyst for positive change in your life. And you’re right, it can! I’ve had the honor of witnessing countless parents define and walk their own journey.
My main intention is grant you permission (if you haven’t already for yourself) and ideas you can use to honor your loss with all it entails AND see how you can still create an epic life for yourself.
This isn’t a, “Do what I’ve done and follow my belief system”, but rather holding space for you and offering resources to carve out your own path in a way that works for you. It’s a journey of self discovery in your new skin.
If you want to get down the road, you have to take the steps. I’m not going to sugar coat it… it’s hard work that only you as the grieving parent can do.
I don’t claim to be a degreed expert in the field. My degree is in political science. But I am an expert through experience, by trial, and by witnessing it move through me and others.
It is by no means the only way, nor even the right way for everyone. What I know is that it’s worked for me and I am supposed to share it so other parents who want it can have it. As I sit typing this I am thinking of you and sending you love and light. May you live your biggest, boldest, happiest life. May you be gentle, kind, and loving to yourself.