Two years ago, our lives changed in ways we could have never imagined. We began a 28 day stay at Childrens Hospital that did not end the way any of us wanted. Beyond the obvious change in our life, of losing Rylie, our lives were changed by the power of kindness. People, we didn’t even know were part of our community, wrapped around us and held us during times of uncertainty and pain. We gained family in the form of nurses, doctors and first responders that cared for us as one of their own. Friends dropped everything to be by our side at the hospital and as we planned Rylie’s celebration of life. We continue to be loved and supported by so many - often meeting them for the first time two years later.
I truly believe this is the power of kindness. Kindness happens in ripples - small little acts that build and become waves changing the shape of our life landscape.
Rylie was never one to dwell in sadness. She had a keen emotional IQ and could sense when someone needed some love. She would honor their feelings, but would always look for a way to boost the mood.
For the second year, I’m taking a page out of her book. I will honor the fact that my heart hurts everyday, missing her, but I will do something to boost the mood.
Each day for the next 28 days, I will intentionally complete a small act of kindness. I will use those ripples to reshape the landscape of both myself and others.
If you’re so compelled, join me on #28daysofkindness. Hopefully, these days are full of stories that capture the power of kindness. I will share them as they occur and would love for you to share your own. Post stories with #28daysofkindness and we’ll celebrate the power of a ripple becoming a wave.
Like everyone else, some days are better than others. Whether we’re dealing with something heavy like grief, or just frustrated with the small things in life, we all experience tough moments, hours, days, or even weeks.
In this season of my life, I’ve had to deal with pretty tough stuff. Hard days certainly happen, but it’s also fair to say that much of the time the good days outnumber them now.
Perhaps I’m just VERY lucky.
Perhaps I’m delusional and rocking my ability to hide from the hard things.
Perhaps it’s because I’m stubborn and I refuse to be beaten down by anything that’s out of my control.
Perhaps it’s because I do my best to consciously choose to focus on the positive.
Perhaps it’s because I’ve been blessed to be surrounded by the most amazing people who shower with me love.
I prefer to think it’s a combination of those things.
Ultimately, I think how good or bad our days are can only be judged by the person experiencing it at that very moment. Perception is our reality, even if it’s not our actuality.
Here’s my reality. As much as I’ve been able to focus on the positive, it’s not always that way.
The other day, was one of those ‘not that way’ kind of days. I woke up feeling a little off and almost restless. I hadn’t slept well the night before, wrestling with demons that I couldn’t quite name.
So I decided to work out. That’s my go to when I seem to have an energy coursing through me that I don’t know what to do with. I’m learning that this ‘energy’ is really just emotion, but I still default to trying to work off the ‘energy’.
Usually that works. Usually I’m able to sweat out any worries, unnamed feelings, and general uneasiness. This time, instead of working through those lingering unnamed demons, they seemed to multiply and I got stuck in my own head.
In truth, my demons really weren’t demons - they just felt that weighty. Again, perception is reality, even when it’s not actuality.
I had been upset by some off-hand comments from both Ziggy and Tanner the night before related to nagging / micromanaging. Since these are areas I’ve been working diligently to address, my sensitivity and reaction to the comments were amplified.
I knew I was stuck in my head. I knew I needed to get out of that space. I recognized that my normal method - to run, often quite literally, away from it - wasn’t going to work. I also recognized that part of growing is going to that uncomfortable place and doing the things that feel unnatural or awkward.
I’d tried my usual coping methods; journaling, working out, ignoring it. They weren’t working. So I went to that place. I decided to try and vocalize what I was feeling.
As much as I am a lover of words, I’m terrible about speaking my truth in the moment. Especially when I haven’t had a chance to practice or polish my thoughts. I’m even worse at speaking it when I’m unsure of what I’m experiencing and feeling. And even worse when I’m uncomfortable with my truth.
This was a recipe for disaster, but I tried. I tried to explain that while I knew I was responding in a dramatic manner, I was really bothered by the comments. As I heard myself say the words out loud, clouds of my own judgement stormed around me. Ziggy didn’t even get a chance to respond before I let those clouds take over and block out any sunshine. As soon as the words were out, I covered them, berating myself for being ridiculous and telling him to ignore me.
Shame took over. I ran from room and crumpled on the floor at the foot of the bed. I folded in on myself, embarrassed by what I was feeling. I tried to make myself smaller, hiding that I was crying. Hiding the frustration that came from trying to do what I know was right and good, but being overrun by the habits born of years of dismissing emotion. As I snuggled into myself, my frustrations and fears became anger. I stayed small, but I got louder - no longer just crying, but banging on the floor and trying to find a way to express the unsettledness I was experiencing.
The small celebration in all of this, is that I stayed in that position for a bit.
I let myself get loud.
I let myself be frustrated.
I let myself just be confused and overwhelmed for a little while.
Not for long, but longer than normal.
I unfolded myself and quietly went back to the normal rhythms of the day. Or at least I tried. After a few minutes in the kitchen, I found myself crying because the decision of what to make for breakfast was just too much. I kept picking up my phone, trying to determine if I could jump on a regularly scheduled call with an amazing friend - knowing it would be good for me, but feeling like I was too much of a mess to even try to hold a conversation.
Ziggy offered to make me breakfast, but even that felt like too much. I must’ve walked twenty circles around the island just trying to figure out what to do next.
Even as I type this, I’m struck by how silly it sounds. But the thing I keep telling myself is that it wasn’t silly. It’s just the reality of what these ‘not that way’ kind of days are. Sometimes those days just are full of trivial things feeling like insurmountable mountains.
My day continued in much the same way. I continued to try and process. I continued to try to find ways to break the cycle. I just wasn’t all that successful that day. The clouds of judgement, shame and frustration got a little less dark, but they hung around most of the day.
Then a bit of sunshine came my way. Ziggy, knowing that I was really struggling, brought home some bright yellow cheerful flowers. The funny thing is that the clouds that followed me around all day literally clouded my vision. It took me quite a while to notice the sunshine he’d left for me on the table.
Once I noticed them though, I was struck by several things. Even in these darker, tougher moments, there is so much beauty in this world. Sometimes that beauty comes in a physical form like the shades of yellow and orange in my flowers. Other times that beauty comes in an act. On this ‘not that way’ kind of day, several acts set the stage for me to be able see some sun though the clouds.
My husband gave me space to experience emotions, knowing that as much as I wanted him nearby, his presence made it even more difficult for me.
The friend that I was supposed to talk to that morning let me cancel on her, reminding me that she would love to just be alongside me in whatever fashion I needed. She left that door open for me to call anytime. When took that invitation later in the morning, she listened while I babbled, just letting me speak. She prayed for and with me.
An uplifting song was texted to me.
Another friend ‘listened’ via text, knowing that I just needed to acknowledge what was going on. Then she posed a question that allowed me to dig deeper.
I was also struck by the fact that in this bunch of flowers, one of the flowers was glaringly different. That difference didn’t take away from the beauty. In fact, on this day in particular, I think it added to the beauty. I felt that this ‘odd man out’ flower mirrored how I felt that day.
I felt odd.
I felt different.
I felt like I didn’t quite belong.
While I’m glad that, for me, the number of ‘not that way’ kind of days are fewer than the good ones, it makes my heart hurt for people for whom that is not the case. Even still that odd flower was a reminder that these tough moments, whether grief-driven, growth-driven, or normal life driven, are just moments. They are one flower in the bouquet of life.
It’s funny how silly little things can happen on any given day that might remind us of Rylie. Sometimes it’s just a song that she loved, or a flavor that she enjoyed, or an outfit she would have liked. It will just be something that pops up and makes one of us think, “Aww… Rylie…”.
Like everyone, Rylie had certain characteristics or quirks that were uniquely hers. Periodically, one of those quirks will pop up in one of us - usually Tanner. We’ll all laugh and joke that “Rylie is haunting us”.
One of the interesting parts about losing someone is that there are so many aspects of loss and grief that are truly just unexplainable. Often, when I sit down to write, I type then erase. Type then erase. Type then erase. Part of that is just the writing process, but a big part of it is just trying to capture the essence of a struggle in words.
This idea of Rylie haunting us is one of those areas where it is a real challenge to find the right words, to be able to explain it in a way that makes sense.
I guess loss and grief somewhat fit into the category of the proverbial onion. There are so many layers to it. You peel one away and find something else. Peel it away and find something else. The loss and grief onion though, seems to be a never-ending onion.
I’m reminded of a science experiment in school where we peeled away layers of the onion to look at the cells. At that point in my life, I’d only really seen the large layers of the onion that fall apart as you chop them. However, for the experiment, we had to peel away the thinnest layer possible - so thin it was like a tiny piece of saran wrap - transparent and it folded in on itself. Perhaps the loss and grief onion is just breaking the onion down to its tiniest layers, which just makes it feel never ending.
Our ‘Rylie haunts’ are just one of the layers of this loss and grief onion. It’s not as if she’s haunting us in a supernatural, spooky movie kind of a way. In fact, it’s almost the opposite. Anytime a ‘Rylie is haunting us’ moment comes up I’m compelled to look more closely at that layer. I’m almost always struck by how those moments really provide us all with a sense of comfort and connection.
In our house, mushrooms have always been a hotly contested topic. I grew up eating mushrooms and loving them. Ziggy grew up surrounded by mushroom lovers, but hating them. Rylie took more after me and came to really like mushrooms, especially as an alternative to steak. Tanner fell more in Ziggy’s camp, although I’m not entirely sure he ever tasted a mushroom before deciding they were disgusting. Needless to say, mushrooms rarely make it into our house.
Sometime after Rylie died, we ordered pizza and by some miracle I got to order my part with mushrooms. It’s a rarity, especially now that my fellow mushroom lover is gone. Tanner decided to try a slice of my pizza that day. We were all prepared to laugh at his reaction to the mushrooms on my pizza complete with quirked up “this is disgusting” facial expressions. Instead, we were met with raised eyebrows and close examination of said pizza, followed by “Wow, this is pretty good with mushrooms on it… Aww, man Rylie, you’re haunting me!”
Rylie was also notorious for eating chocolate chips, really anything chocolate. While Tanner also enjoyed chocolate, it was never at the same level. With Rylie, we’d often comment that she might enjoy a little pancake with her chocolate chips. She would often smother anything that was remotely acceptable with chocolate chips, nutella, or sugar of any kind. Tanner was always more moderate. He enjoyed chocolate chip pancakes or waffles, but there was always clearly pancake or waffle involved. In the last year especially, I’ve found that Tanner’s waffles are disappearing under layers of chocolate chips - which are also accompanied by handfuls of chocolate chips going into his mouth at the same time. Aww, Rylie…
On a recent trip to Washington D.C., I was taken aback by Tanner’s order of Dr. Pepper at lunch. Tanner has always been more of a Coke / Pepsi kind of a guy like his dad. Rylie and I enjoyed Dr. Pepper. When I looked strangely at Tanner after his order, he just shrugged and said, “I guess Rylie is haunting me again. I just have a taste for Dr. Pepper.”
Each time Rylie haunts us, I feel a strange sense of peace. While it’s strange for our tastes to suddenly change or morph into something she loved, there is comfort in feeling her nearby. I’m sure there’s some sort of psycho-analysis that would explain this phenomenon, but I prefer to just take it for the comfort that it is. It is a way for all of us to pause, remember, laugh and feel close to Rylie. Like the onion, it sometimes even brings tears to our eyes.
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.