I recently joined a small group of women that meet every Sunday at Starbucks. Several of the women had been meeting for months, but there were a few of us that were new to the group. This meant that we were asked to give the obligatory elevator speech - telling the other members a little bit about ourselves.
I’ve always found those elevator speeches somewhat challenging. I never know quite what I should say. It’s always been hard to gauge what might relevant or that others might find interesting.
Since Rylie died, I’ve found that it’s even more challenging to come up with what to say. It’s one of those awkward things where I have to determine if the setting is one in which she might come up. If it is, I’ve found that it’s easier to just say that she died right off the bat. That way there’s not some weird moment where people feel like they’ve gotten to know you and then BAM! a bombshell like that is dropped. The trickier times are when the speech is given in a situation, where I’m not sure if it’ll come up.
Although, Rylie is one of the most important parts of my life, it’s not necessarily something that is relevant. That’s even more awkward - the last thing I want to do is enter a business or professional meeting and lead with, “I’m Meghann. I have two children. Rylie died in May 2017 and Tanner is almost 13,” when there is very little reason to share that information given that setting. Sure in both business and professional settings our personal life comes up, but I found in those situations, it’s often better to leave that part of my story for more one-off conversations.
Even then it’s tricky, because death, especially death of a child, becomes the elephant in the room. I find myself wondering how I can tell my story in a way that is honoring to myself, to Rylie, and those around me. The last thing I want do is make people uncomfortable or wonder what to say.
As I sat at Starbucks, listening to the other women in the group - okay, kind of listening - I was also weighing the options for telling my story. I realized that even without the death of a child, the elevator speech sucks. I don’t think I’m alone in that.
In many ways it’s challenging to boil one’s life down to a few sentences, but I also find that sometimes it’s hard to come up with anything to say at all.
I mean, we’re talking about identity here. For women especially, but I have a sneaky suspicion men have this same struggle in different ways, our identity is tied to so many external measures. When I meet a bunch of women (especially at my age), the elevator speech almost always includes listing off a husband, a certain number of kids and their ages, oftentimes a job, and then some sort of tie to family duties - shuffling kids to and from a million different activities, running the house, etc. Very rarely does it include something about the woman herself - something she just really identifies with, enjoys doing, or is proud of.
Don’t get me wrong, being a wife and a mom, are two of the hardest and most rewarding ‘jobs’ out there. There is a huge source of pride in all of those things! But as I sat preparing my speech, I was struck by the huge holes.
Well I’m a mom - but one’s dead - do I want to get into that?
I’m a wife - to a guy named Ziggy - do I want to explain that’s really what he goes by and not some weird pet name?
I’m technically a teacher, but I’ve taken a leave of absence this year - do I want to explain why?
I’ve been in the corporate world, but that’s been over five years ago and it doesn’t seem relevant.
I’m running a non-profit, but it’s not a full time job, and I don’t want this speech to turn into a promotional meeting.
I guess I spend my time meeting friends, making sure we have food to eat and that our house is semi-presentable, volunteering, running and doing yoga, but how do I admit that I’m not really sure where I spend my time these days?
Over the years, my elevator speech almost always lead with my profession and the fact that I have kids. At this very moment, those are two areas that take a lot of explaining and I don’t identify myself with them in the same way. So it just feels inauthentic, but the authentic part feels too heavy, or too real for a first meeting…
Suddenly, I was struck by the fact that I’m not alone. My holes may be different, but so many people have experienced things in their lives that are challenging, embarrassing, uncomfortable, or unsettled - I could go on and on.
How does the recently divorced or single parent introduce him/herself?
How does the person who has jumped from job to job just to make ends meet explain his/her situation?
How does the person who just lost their job explain that?
How does the person who has always wanted children, but has been unable to have kids, introduce him/herself?
How does the person who wants nothing more than to meet someone and get married, explain that this dream hasn’t yet been realized?
How does the person who has experienced tragedy, of any kind, introduce him/herself without entering into this defining moment?
More importantly, why are we wrapping our identity in so many external factors? What would an elevator speech look like that wasn’t somehow tied to accomplishments or milestones?
Imagine being able to introduce yourself in a way that honors who you are at your very core…
“Hi, I’m Meghann. Looking back in my life, I’ve had some major accomplishments and I’ve had some major hiccups. Someday, I’m sure I’ll share those with you, but here’s who I am - I love to get a good sweat on and think deep thoughts. If you ever want to debate the finer points of life, invite me on a run or for a cup of coffee. I’m a sucker for Young Adult fiction and sappy romance movies. I’m an even bigger sucker for motivational quotes, videos, books etc. I am waaaay wordy and love to play with the nuances of words - creating just the right message, but don’t be afraid. I promise I won’t judge your sentences. I love to get things done and cross things of a color-coded list, but even more than that, I believe in connection. I love talking to people and taking the time to enter into their story, bit by bit.”
Wow - it wasn’t until I started typing that I was able to think of my story that way. Maybe I should put this version on my phone so I can use it in the next elevator speech situation. I wonder what kind of reaction I would get?
Perhaps we all need to revise our elevator speech. What an amazing world it would be if we were able to introduce ourselves in a way that spoke to our core, in a way that would invite conversation and allow us to share the milestones and the hiccups in an authentic way.
What’s your elevator speech?
During the last several months, I have been blessed with the gift of time. I took a leave of absence this year so that I could ‘work on me’. I’ve somewhat affectionately dubbed it ‘The Year of Me’. It’s been both humbling, wonderful, and terrifying all at the same time. For a girl who is constantly on the go, has a to do list eight miles long, and wants to conquer the world, being faced with days that are largely unscheduled has been an experience. It has taken conscious effort to keep this time flexible, to build new patterns, to allow myself space to explore different things.
My natural tendency has always been to pack a million things into a day. To wake at 4 or 4:30 for early morning workouts and fill the hours between the end of the workout and bedtime at 11 or later with lots of checkboxes. While my job as a teacher allowed me to make connections with people, my students especially, I really never made time for others outside of what came naturally with teaching. I measured my day simply by how much I got ‘accomplished’, how busy I appeared to be, and how much more I’d found to add to my list. Kind of insane when I look at it written out like that.
During this ‘Year of Me,’ I’m working to change some of these habits and tendencies. To trade appearances for more meaning. It’s hard work to break habits and thought processes that have been ingrained for so many years. Many days I struggle when I look up and realize I’ve somehow wiled away seven hours of my day and have nothing ‘to show for it’. But I’m trying to measure my success by something different. It’s not how busy I look, or how much impact I can visibly see on my immediate environment. It’s not how many things I’ve crossed off my list or even how full my calendar is. It’s about what I’m learning. It’s about how I’m growing. Even if I have nothing tangible to wave around as a badge of honor.
So, I’ve been guarding my time fiercely. I’m striving not to fill it with minutiae, but to fill it with meaning. I still rely on my calendar to keep me organized and it’s full. It’s full of meeting people over coffee, hiking with dear friends and talking about life, hockey practices without a bag of grading and a chance to talk to other parents, volunteering, and regular FaceTime dates with friends that aren’t as close by but challenge me to be the best version of myself.
While all of this sounds dreamy, it’s also an effort. It’s an effort not to fall back into the minutiae that made me feel good because I could show anyone (because I’m sure so many were interested - ha, ha) how much laundry I’d finished, the groceries that I’d bought, the papers that I’d graded, the lessons that I’d developed, the meetings I’d attended or spearheaded, and the floors that I’d vacuumed.
Suddenly, I find myself trying to judge my worth, my contribution, by the meaningful connections I’ve made that day. Even then, I have to remind myself it’s not about how many, but the depth of those connections. I have to remind myself that it may even be a meaningful connection with myself as I read, study, write, run, whatever.
I’ve always been a reader and I’m a sucker not only for a good cheesy Young Adult novel, but also for a good personal development / self-help type book. In the last year and almost a half, I’ve read my fair share of both cheesy and growth minded material. This weekend I was struck by a quote I read from the Dalai Lama, “The way through the sadness and grief that comes from great loss is to use it as motivation and to generate a deeper sense of purpose.”
This made me think of a conversation I had recently where I was asked about how I ‘stay so positive’. My first response was that it’s a lot of pretending, but the truth is also that it is a daily choice.
Each day I must wake up and make a conscious choice to look for beauty in the world, to see opportunities to grow, to honor the people I love. I must make the choice to see, feel and do these things regardless of the ugliness in the news or the hole in my heart.
For me, choice is becoming a habit, and most days I can make that choice in the morning and have it carry me through. But in all honesty, there are other days where I must consciously make that choice - over and over again. It can be exhausting. There are days when I give in to that exhaustion, but I try not to because I know deep in my soul, that regardless of how many times I have to make that choice, it is the right one.
I love that the Dalai Lama doesn’t talk about the way to “get over” grief, because losing Rylie is something that I’ll never “get over”. Instead it is something that I will wade my way through. Some days it will be easy, like walking at the edge of the surf on the beach where the sand is compact and hard. Other days it will be more work, like slogging through deep peanut buttery mud.
Regardless of the conditions, I’ve come to find comfort in knowing that I will use this grief to grow. Rylie has made me a better person. From the moment that she was born, and perhaps even more so since she died, she has been my motivation and given me a sense of purpose. Sometimes that motivation has been misguided, but I’m a work in progress - I’m learning.
When she was first born, my motivation was to be the best mother and role model that I could be. My purpose became to love her fiercely and to make sure she knew how loved she was. I found myself trying to do more and be more so that I could be an example to her.
Yet, somehow, even then, I found myself watching her and learning from her. I’d watch her grow and was always in awe of her spirit which was so authentic and loving.
Rylie loved with a heart that was so big and she welcomed everyone into it. She had a way of quirking up her eyes and laughing so that you couldn’t help by join in. She showed compassion in ways that were beyond her years.
Of course, much of this is hindsight. In the heat of moment - I was more aware of the times she’d dig in her heels and question me. Or the times that she’d drive me crazy making messes while she created the perfect gift, note, or trinket to remind someone of her love. Or the times when she’d get emotionally invested in a situation that was beyond her control and I’d have to talk her down.
Now that she’s gone, my motivation has shifted to be one of choice not control. I realize that I cannot control everything and by being present in the moment, I can learn a lot. I choose to honor her spirit and to live in a way that is inspired by love.
Although, I’m still figuring out how to do this, I know my purpose is to spread joy and kindness in her memory. To accept myself and others where we are. To show compassion and empathy. Most of all, I will make the choice each day to smile, to say hello, and find a little bit of joy in the day.
The other night, I found myself crumpled over the sink. The weight of what I’d just seen and how much I’ve missed it weighed on me - literally causing me to fold over myself, balancing my head on the faucet. The water poured out of the faucet drowning the tears coursing down my face.
There have been times since the accident and Rylie’s death where I’ve found myself physically affected by the loss, but I can probably count on one hand how many times I’ve let that happen. I’m sure there would have been a lot more times like that, but I put up fences. I like to compartmentalize and everything has its place. I’m learning, through counseling, soul searching, etc. that really FEELING an emotion is not my normal MO. I’m also learning that when I let it happen, it can be painful. It can be breathtaking. It can be bittersweet. But it is always powerful.
That being said, I wasn’t prepared to go there when I stumbled upon some videos of Rylie.
A while back friends of ours, who also lost their daughter, shared video of her. It was beautiful and bittersweet. It brought tears to my eyes to watch this beautiful soul, so vibrant and alive. It made me realize how similar our girls were.
Then, I was struck by the realization that I really didn’t have any video of Rylie (other than when she was maybe two and we were first time parents with a camcorder). Who knows if we could even figure out how to watch that!!! It struck me that I didn’t have any old voicemails from Rylie. I couldn’t even call and listen to her voicemail greeting. We didn’t have her phone to scroll through and see silly things she’d recorded, because it was lost in the accident. At some point, I looked through some things on my phone, Facebook, and her iPad, but there wasn’t much.
Then the other night, I somehow happened upon a few videos that were downloaded to Google Photos. They weren’t much, a birthday serenade and a silly fashion show with her and Tanner. In both clips, Rylie wasn’t the main attraction, but her laughter was clear. Her joy was present. Her voice so real.
I watched. I indulged. I rewatched (maybe more than once)- laughing a little and crying a little.
After that little indulgence, I snapped back to reality and got about the business of getting ready for bed.
Most times, when I begin to reminisce, wonder about what could be different, or just ‘feel’, I batten down the hatches and hide out behind all my to dos. I don’t allow myself to sit in it. I don’t allow myself to think about it. I don’t allow myself to feel the vulnerability of it. I just distract myself with a to do list.
This time wasn’t like that. I don’t think I was trying to avoid feeling, or reminiscing, I just turned the videos off, like I would any quick clip that I’d indulged in, and got back to what I’d been doing.
At least that’s what I thought I’d been doing…
So as I set about to wash my face, I was shocked by the intense feelings that washed over me, through me, around me. I resisted the urge to bury them down below the surface - in all honesty, they were probably too intense to have been buried anyway. Instead, I tried to open myself to the intensity.
It was then that I crumpled. I think it was my natural response to protect my heart that was hurting. It was clenching - I was clenching. My body was responding to the sounds - to the nuances that were only Rylie.
It was remembering the way her voice would lilt on certain words. I was remembering.
It was feeling the love that came through every missed note of Happy Birthday. I was feeling.
It was longing for that joy and laughter. I was longing.
The few times that I’ve let my emotions be felt so deeply that they manifest in bodily sensations, it’s been about feelings of anxiousness, frustration, even anger. Other than the day that Rylie died, I don’t think I’ve really let myself experience moments of longing like that.
I was sad and lost. It was uncomfortable. My body was telling me that it hurt so much that it wanted to crumple into a fetal position and protect itself. But it was also freeing. It was acknowledgement of a truth so real, but one that I often ignore.
The truth is never again, will I hear her missed notes. See her act silly with her brother. See him look at her with adoration. Never again, will I hear that laughter so rich with a tinkle of joy.
I laid my head on the faucet and let the permanence of the situation wash over me. I felt the longing and the loss roll over me in waves. Then I dried my tears and climbed in bed. I climbed into Ziggy’s arms and just lay there. I felt another crumpling. I curled into the fetal position and realized that I’ve become used to not having her here. It’s not that I don’t miss her Every. Single. Day., but it’s become my normal.
That sucks. There’s really no other way to put it. I am thankful that I don’t have to crumple every single day. That I’ve figured out ways to cope, to be constructive with my grief, but it sucks that Rylie’s absence has become the norm.
So I lay there - Ziggy held me - and I let that reality wash over me too. The need to fold into myself gradually lessened and I leaned into my support system some more. I let him carry some of the weight.
Days later, I’ve come to acknowledge yet another freeing fact. I can acknowledge those truths. I can even let that despair that comes with those truths wash over me. I can feel - really feel all that comes with those truths - and I will be okay. Maybe not the same, but okay.
I realized those hurts were slowly replaced by joy. The waves became waves of gratitude. I may never experience those things again, but I was lucky enough to experience them before. I was lucky enough to find two videos that captured her spirit. I can listen and watch them any time I want.
I will hold on to that gratitude. I will allow myself moments to really FEEL, to allow myself to crumple onto the sink or into the arms of someone I love because that emotion needs to be honored. But eventually, I will let those waves of hurt calm and become waves of joyful reminisce.
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.
I am not perfect... I’ve known this pretty much my whole life.
I don’t want to be perfect... This is a new revelation for me.
It is a truth that I am both sure of and unsure of at the same time.
While I have always known that perfection is unattainable, this logic has not stopped me from trying to attain it, or something close to it. Only recently have I realized the cost of this goal.
I have lost moments. Moments that can never be recovered. Moments of celebration, tenderness, and joy. Moments even of frustration, fear and failure.
I have lost opportunities to show my children, or truth be told, myself, the value of a struggle, of humility, or the success that can be found in defeat.
Along my journey in grief, I have found some solace in my quest for perfection. This solace comes only because the quest is familiar. It’s an easy pattern of life on which I can lean. I don’t have to think about it. I don’t have to admit that I am sad, or just off. I simply put blinders on and travel that well worn path.... but I’m realizing more and more that it leads no where.
Lately, I’ve noticed more frustration in this quest for perfection than comfort. I find myself longing to blaze new trails - to pause and seek out moments like those that I’ve lost. I find myself looking out, straying off to uncharted territories, or at least wanting to stray, more and more.
If I’m being honest though, it’s terrifying - taking a leap from the well worn path to the great unknown. On one hand, it sounds beautiful; it sounds freeing, but it also sounds somewhat impossible.
The other day, I found myself caught between these two trails. The well worn path, where I am in control. The one where I can power through anything. And the little hint of a trail that could lead to something beautiful, but it could be quite ugly along the way. This trail was littered with overgrowth. It had branches that could smack me in the face, and leave scratches on my legs.
I started the morning off in my usual way. A workout, a walk with the dogs, packing my lunch and taking a shower. It started off they way I expected. Then suddenly, while in the shower, I became ‘not okay’. I was sad and overwhelmed.
Per my usual approach, I pep talked myself - told myself to ‘get it together’, scrubbed my face, reminded myself of all the things I had to do, and the expectations I had for myself and others had for me. I hiked up my proverbial boot straps and sought out that well worn path of perfection - living up to expectations, exceeding them. It lasted all of about 5 minutes until I was out of the shower and trying to find an outfit for the day. I fell apart again - over an outfit! Over the course of the next 20-30 minutes, I continue that cycle: pep talk myself - tell myself to power through - tell myself that falling apart over minor things was ridiculous. I’d pick myself up and keep traveling down that path to perfection in little increments only to be brought to my knees by the lack of being able to control my emotions and desires. Ziggy found me - held me and then I fell back on my path - apologizing for “not being able to hold it together”...
I continued trying to travel the well worn path of perfection and holding it together, only to be pulled by the desire to blaze new trails and just let go no matter how ugly it got, for a short time.
I never quite got the courage to completely stray from well worn path, but I off-roaded for a bit. I reached out to my teaching partner and asked for some time. I admitted that I was having a rough morning. She respond with unparalleled grace and support.
I fell into Ziggy’s arms and let him console me. As he held me, I found hints of the beauty in straying from the path. He reminded me that I don’t always have to have it all together. I realized that the world kept turning without me meeting my usual expectations.
Later in the day, after stepping back and reflecting, I realized that my pep talks weren’t really pep talks. If they had been, they would have encouraged me to be okay with not being okay. They would have encouraged me to sit in the emotions coursing over and through my body.
As I’ve been writing, I realize that I strayed enough from the perfection path to find some beauty. I didn’t sit for long in those ugly, branch scratching emotions, but I acknowledged them and took a few more steps into the great unknown. I acknowledged that I wasn’t “okay” and allowed myself to hear that I don’t always need to be.
There was beauty in me straying, even just a tiny bit, from the path. There was vulnerability and support from so many. There was also the revelation that I can’t, nor do I want to, strive for perfection.
I may get scratched. I may trip and fall, but I think I’ll learn a lot about myself, my strengths and my weaknesses as I blaze new paths and seek out new truths. I will embrace that I am “perfectly imperfect”.
28 days – it seems so short and so long, all at the same time. It’s less than a month, but we all know when you’re waiting for something, it can seem like an eternity.
We spent 28 days in the hospital with Rylie. We spent 28 long days waiting for her to wake up – to see that fantastic smile. At the same time, we only had 28 short days to hold her hand, to stroke her hair, to read The Just So Stories, to whisper in her ear.
On April 29th, it will be one year since the fateful day that changed our lives forever. It altered our lives in unimaginable ways, but not all of them bad. We have learned so much about ourselves, about the power of the human spirit, about the importance of connection. We discovered that our daughter, at a mere twelve and half years old, shook the world in gentle ways. She impacted so many through her kind, fun loving spirit. Many of us never realized just how much impact she had, until she was gone.
While those 28 days were both too long and too short, we know that it’s a magical number. They say it takes 21 days to build a habit – so why not overachieve a little bit and go with 28 days?!?
In honor of Rylie’s memory, we are embarking on a 28 day journey of kindness. Each day, for 28 days, we will find a way to spread an act of kindness no matter how big or small. We will hold the door for a stranger, make eye contact, and make conversation. We will buy the cup of coffee for the person behind us. We will make an extra dinner and leave it on the porch for our neighbor. We will deliver a care package to someone less fortunate than us.
It’s not about the cost in time or money, it’s about creating a ripple effect of kind acts that honor Rylie, her spirit, and her desire to make people happy. It’s about building on that ripple and creating a kindness wave. Imagine the potential… Join us!
Let’s all start on April 29th. Look for a way to touch someone’s heart, to brighten their day. It’s not about the act; it’s about the IMPACT. Let’s commit to 28 days of kindness together. Who knows, we may very well build a habit that goes beyond that time – what an amazing tribute for a very special girl. #28daysofkindness
It's been nearly a year since the accident that altered our lives. Our lives changed in many unfathomable ways, not all of them bad. We have been, and will continue to be tested, but that has made us stronger.
We know that there is a choice in how we react to and accept the loss of Rylie. We have consciously decided to CHOOSE HAPPY! This is the way that Rylie chose to spend her days, and to honor her, it is the way we intend to spend our days.
Rylie's ARK is a labor of love...
It is our chance to spread kindness.
It is our chance to "gently shake the world".
It is our chance to grow.
I am continually amazed when I hear of how Rylie touched so many people's lives in such a short time. She had a knack for making people smile, making them feel loved, and brightening the world around her.
Through Rylie's ARK we will work to spread kindness either through ripples or waves.
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.