Since Rylie died, we’ve been thrown headlong into this thing called grieving. What I didn’t realize before is the eggshell quality of grief. I never thought about the fact that grief affects so many groups of people in so many ways. I never understood that literally no one grieves the same way - which means there is no magic formula. No perfect solution.
As a society, I don’t think we really know what to do with grief. It’s taboo. We talk about it, but not really. No one really knows what to say, how to respond, how to help, or what not to do. We are all just making our best guess.
So while I get that loss and grief is not something that people really want to, or maybe know how to, address, as someone who is in the throes of it, I feel compelled to share my perspective.
Some people talk about it as a journey, but there’s really no destination. Some talk about stages of grief, but that’s misleading because that implies that you finish one stage before moving to the next one. It also implies that there’s an end to it. None of that is true. We don’t experience one thing and then move on to the next. Some parts ebb and flow, some build on each other. There’s no pattern, no norm. There’s no “magic date” when you no longer miss the one you lost.
Even as I write this, I realize this is far too simplified. Perhaps this is why we don’t “do” grief. It’s complicated. It has so many variables and it never comes out the same.
One thing I’ve noticed is that no matter how you’ve been affected by grief, it’s never easy to find words. It’s hard to know what to say, what to do. Even for me, someone who is experiencing grief first hand - I often don’t know what to say when faced with someone who has just experienced a loss.
It’s hard for the outsider looking in because they don’t want to cause any undue stress, tears, etc. It’s hard for someone who also feels the loss, but doesn’t want to show it fear of upsetting you and they want to be your rock, your support. It’s hard for the person on the inside because we don’t want to “dump” too much on you, worried you might run away in fear and leave us too much alone.
This weekend I was struck by this challenge of knowing what to do or say once again. I was so lucky to talk to hundreds of people and share Rylie’s story. This also meant recounting our loss and the circumstances around it over and over. Part of that is a known challenge of starting a foundation in our daughter’s honor. It’s a price I’m willing to pay. I love talking about her.
However each time I share the story, someone inevitably said some form of this phrase, “I’m so sorry for your loss.” I get it. I’ve said it - even in the last year or so, I’ve said it.
There’s absolutely nothing wrong with that phrase, but it’s hard for everyone involved. The person saying it feels obligated to address the loss and the tragedy it is. The person hearing it feels obligated to respond. For me that response is most often, “Thank you,” but that feels wrong. Often I'll add something along the lines of “don’t be sorry”.
As I sit and reflect on that response I realize it is horrible for two reasons. On one hand, I don’t want to put anyone out or make them feel bad on my behalf, so I immediately tell them "it’s okay" or "not to be sorry". On the other hand it totally discounts their actual feelings, which is not my intention. It’s simply what we’ve learned, or not, about how to cope with grief.
So here’s my two cents. Since grief is different for everyone, there is unfortunately no perfect approach. There is no formula. There’s no guidebook. What there is, is compassion and grace.
If, as a society, we respond with compassion - with a true desire to extend our hearts to those who are hurting, no matter where or how they are connected to the loss, we’re bound to make progress. If we extend grace to each other and assume we’re all doing the best we can in this maze of emotions, then we’re bound to make progress.
Come to grief with an open heart.
Worry not about saying the right or wrong thing. Worry not if you cry or don’t. Offer a hug; reach out touch the person you’re talking to. So much can be conveyed in a simple physical connection. Oftentimes that connection is more powerful than any words could ever be.
Know that whatever you do, or say, will be seen through the lens of your true intention - of love, of compassion, of disbelief, of sadness, even of confusion or uneasiness. But it will be GENUINE. For me, that is the most important thing.
Meghann and Ziggy Guentensberger are Rylie's parents. During their time in the hospital with Rylie and after her death, they began writing about their experiences. What started as a way to keep people informed of Rylie's condition, turned into a way for them to process all that was happening. After she died on May 26, 2017 they both continued to write as a way to process and heal themselves and occasionally inspire others. These writings are housed on the Rylie's ARK Facebook page.