At our house, we’ve always loved getting into the Halloween spirit. Rylie would often decorate the house with those crazy cotton spiderwebs that seem to attach themselves to both nothing and everything at the same time. Ziggy and the kids took great joy in purchasing a giant, hairy spider that hangs from the door and makes creepy noises, causing me to avoid using the front door for about a month. I prefer decorating in the brilliant reds and oranges of fall and carving a pumpkin.
In my younger years, my parents also enjoyed decorating and even more so creating an experience for trick-or-treaters. It always involved some basic Halloween decorations and spooky music playing, initially on a tape, and graduating to a CD. Dad usually rigged some contraption that could be operated somewhat remotely. Most of the time, Mom was his accomplice, often creating the illusion of answering the door on a spookily decorated porch like all the other moms on the street. That’s when Dad would “come alive” or launch his contraption(s) - completely startling the unsuspecting guests.
Still, to this day, I can’t help but smile thinking of the wild things that we’d do. It was a special time of bonding and one that I wanted to continue. So, once Rylie and Tanner got a little bit older, we resurrected the tradition, even including my parents and other friends in our escapades.
As Halloween approached, our dinner time conversations often revolved around what kind of experience we’d create for unsuspecting visitors. At first it was more about the adults. My parents, Ziggy and I got to channel our inner kid and play pretend again. Then Rylie got in on the action. There were several years when she decided she’d rather be part of our haunted missions than trick-or-treat herself!
Each year, we’d pick a theme. The kids always had a role in that, whether they stuck around for the show or chose to collect Reeses Cups and Twizzlers instead.
One year the theme was a Haunted Pirate Ship. I wish I could remember whose idea was what, but I think it started with the fact that Rylie had an old pirate costume. In a way that’s kind of the magic of this whole ordeal - it was about our group of us, not any individual. Each of us would contribute ideas and somehow it all came together. It was just about imagination, experience, and fun.
For our haunted pirate ship, we each had to assemble some sort of pirate attire. A giant cardboard ship was crafted and place in front of our porch. A teeter-totter bike ramp that Zig had created for the kids became “the plank” and our trick-or-treaters had to walk the plank in order to get their candy. Pirates of the Caribbean music played in the background and as kids approached, our pirate selves would come to life harassing them with pirate speak and threats to throw them overboard. I can still hear Rylie’s giggles as she watched her always-serious mom and prim and proper grandparents turn into scallywags!
Another year we set up a Haunted Gold Mine. This one definitely started with Rylie! As I look back on this memory, I think it also highlighted one of the traits that Rylie possessed, but I didn’t always appreciate at the time.
Rylie loved bringing people together. She sought out ways to connect with others over common ground. For her, rocks were a way to connect with Grampy (my dad). My dad is a geologist by trade and somehow his love of rocks transferred to her. She was enamored with rocks and loved to collect them, look at them and even asked to go to an old gold mine for her birthday once!
So when Rylie proposed a haunted gold mine as our next theme that got Grampy’s wheels turning. Together, Rylie and Grampy, with the help of the rest of us determined that trick-or-treaters would have to pan for gold in order to get their candy.
My mind doesn’t work like this, but there was a wheelbarrow, a hose, a chute of some sort and a lot of rocks involved. Rylie LOVED it. We all dressed in scary masks and old clothes and took on the role of dead miners come back to haunt the mine.
In the last two years, it’s been much harder for all of us to get into the spirit. As much as we all enjoyed the process of bringing an idea to life, decorating, and creating a spooky experience for both kids and their parents, it’s just not the same without Rylie’s contagious laughter and spirit for the mischievous.
With the passage of time, I know it will get easier to channel her love for the season. I’m almost ready to dust off the kitchen table and gather the troops around for a planning session. It won’t be the same, but I know that bringing back togetherness, imagination and fun is a wonderful way to honor, not only Rylie, but the true spirit of Halloween - the magic of letting go and playing pretend.
The entire month of September, we’ve been collecting supplies to help struggling families create memorable birthday parties for their children. Since it’s Rylie’s birthday month, it just made sense to connect the two. As I sat considering what stories to share next, I was struck by just how perfect the theme of birthday party celebration is.
Rylie and Brooklynn met the first day of first grade. We were new to the school and new to Castle Rock. In fact, we hadn’t even moved in yet. In the chaos of buying a house, working new jobs, raising two young children, and commuting from Aurora, I’d missed an important “first day of school” email. Apparently we were supposed to stay for a while on the first day and help our kiddos get settled in organizing their supplies and desks!
I walked Rylie to her classroom door and saw all the moms / dads standing behind their child’s desk instead of just kissing them goodbye at the door. I’ll admit, I freaked out a little. I was already going into work late, but I had a meeting and given my typical “the world might stop if I’m not there to facilitate its turning” manner, I was convinced that I couldn’t miss it. But I didn’t see how was going to get out of it, so I walked Rylie in the classroom. Honestly I think she was just as dismayed as I was that I had to stay. From her first days in preschool, she loved the autonomy and responsibility of school and relished being able to wave goodbye and walk into her classroom by herself.
We found her desk, and looked over to see a friendly smile from a beautiful blonde and her mom. Mom must have seen the desperation in my eyes because she introduced herself and her daughter. Brooklynn and Rylie connected immediately. They grinned widely at each other and eyed each other’s school supplies, each beginning the process of labeling and sorting them. I immediately asked what I’d missed about this first day of school, assessing my next steps. Shannon offered to help Rylie that morning so that I could get to my meeting. That was the beginning of it all.
The girls became fast friends and the family pretty much adopted Rylie as one of their own. Although, they had somewhat different interests outside of school, they had a connection that seemed to stand the test of time. This was true even after Rylie changed schools in fourth grade.
One of the things that kept the two girls connected was birthday parties and not just their own. Every year, pretty much from when they first met, Rylie and Brooklynn would help out with Brooklynn’s younger sister’s birthday parties.
I didn’t really realize how many parties they’d done together until I started looking at pictures. Pictures that I’m so glad that Shannon took because, goodness knows, I am terrible at that.
Early on, I think Brooklynn and Rylie were there mostly as an extra source of entertainment. Since the sisters were only a few years apart, the themes of the Amanda’s parties often were things that the older girls would enjoy too. As they got older, they took a bit more active role in facilitating the parties and got a kick out of being ‘in charge’ of certain aspects.
While these parties were always something that Rylie looked forward to, they became even more important after fourth grade when she switched schools. The girls’ diverse interests meant that they both got pretty busy and didn’t often have opportunities to get together. Without fail, though, we’d get a call as it got closer to Amanda’s birthday inviting Rylie to be part of the fun. There were times that Rylie would rearrange her schedule, and even a few when the party would be rescheduled, all so she could be part of it.
I don’t think any of us knew, at the time, how special these parties were to all of the girls. But as I look back at the pictures and see them all growing up together, I know they are and were cornerstones in a very special “sisterhood”. I’m positive that being able to help “run” the parties led to Rylie’s love of planning her own parties. I know that each of the girls felt extra important because of their role in the party.
Isn’t it beautiful that they had that bond - that connection - over something as simple as a cake, presents and fun activities?
I don’t really remember fully when Rylie started planning her own parties. In fact, I can’t quite recall if it was a gradual process where she just had more and more input, or if one year she just took over. What I do know is that she loved the planning.
Like many people, she loved the actual event and the attention it garners, but what she loved most was creating the experience for her friends. She loved the details and thinking through how it would all go down.
Four years ago, for her 11th birthday, Rylie decided on a Red Carpet themed birthday party. Her goal was to create a chance for everyone to feel the glitz and glamour of being on the red carpet for a movie premiere. Funnily enough, I have zero recollection of what movie was “premiering”, but I loved her vision for the experience she was trying to create.
For Rylie, this birthday fell in her sixth grade year. The year when she and many of her friends started showing more and more interest in make-up and fashion. Playing to this interest, Rylie sent out invitations to her Red Carpet party and asked each of the attendees to bring a dress to match the occasion.
While some of her friends, loved this idea, she also had a few friends, that would much rather wear sweatpants than a fancy dress. What I love about her friend group, is that they knew what Rylie was after and they totally played along.
Prior to the party, we had to pick out party decor, procure snacks that would make the evening just right and shop for her perfect red carpet ensemble.
A stop at the party store resulted in a fabulous background complete with gold stanchions and red velvet rope as well as radiant flashes. We picked up a plastic red table cloth to serve as the red carpet, a clapperboard, and a few photo booth style props.
For the movie premier, Rylie wanted her friends to have a variety of treats - all the things she’d drool over at the movie theater but we rarely bought. We picked out boxed candies: Skittles, Twizzlers, M&Ms, Sour Patch Kids, and Junior Mints. Each girl got her own reusable popcorn bucket for Ziggy’s delicious stovetop popcorn doused with melted butter and salt. Rylie scoured Pinterest for red carpet themed cake and ended up finding “popcorn” cupcakes. So we bought striped cupcake wrappers, made chocolate cupcakes, frosted them with white frosting and topped them with mini-marshmallows that were cut and colored to resemble popcorn.
Then came the ensemble. She wanted a “fancy” dress that was worthy of the red carpet, but she knew I’d be too stingy to buy her anything new. So she requested a trip to Goodwill. We scoured the racks and she tried on dress after dress. There was a lot of laughter in the dressing room that day since she really wanted a more “adult fancy” dress and she didn’t have the adult body to fill it out.
I kept picking out pretty dresses from the girls racks, but they were too “kiddish”. She kept going to the juniors section and straps would fall, sections would gape, parts were too long or too short. It felt a bit like we were doing the dress version of Goldilocks and the Three Bears. Finally she found a dress, in the junior section, that was navy blue lace and had spaghetti straps that we could adjust so that she could move freely.
I loved that day of dress shopping with her. I loved the way we’d banter back and forth about the styles and appropriateness / inappropriateness of some of them. I loved the way she’d twirl in the mirror or giggle when a dress just slid right off her body. At the time, I figured it was a peek into the future - what it’d be like when we’d shop for homecoming or prom dresses. In hindsight, I see the gift that it was, since we never got to to that.
On the day of her party, Rylie asked that the girls bring their dresses and they would go through the whole pre-red carpet party prep. She set up a station for all the girls to paint their nails. They played around with some make-up and then donned their fancy attire.
One of my favorite memories of this particular party though was the way that Rylie included Tanner. She asked Tanner to invite his friend Max over to be the “security guards”. Both boys took their role seriously and dressed up in their security guard finest. Max even brought over some handcuffs in case the crowd got too rowdy.
The security monitored the actual red carpet where each girl had her moment in the spotlight posing for pictures both individually and as a group. Then they guarded the entrance to the movie screening room while the girls chose their treats. When the time was right, they opened the screening room and the girls piled in giggling and juggling their treasures. Once they were seated and their safety was ensured, Rylie released the security guards to get their own treats and then ‘disappear’.
For Rylie, no detail was spared. It was about creating the perfect experience for everyone involved. We each had a role and she had a special way of making sure that we knew were were important to her overall vision. There’s a part of me that really wonders what kind of experiences she’d create as she got older. While I’ll never know the answer to that, I do know that she taught me that the birthday party isn’t about the birthday ‘girl’ or even the presents, it’s about coming together, celebrating and experiencing each other.
Today, Rylie would have been 15 years old. She’d have been a sophomore in High School. I’ll be honest, it’s hard for me to really picture her in high school. There’s a part of me that can extrapolate that vision since we have some photos where she looks way older than she was. But there’s a large part of me that can only picture her as her almost 13 year old self… It’s a weird thing to see her friends grow and mature, yet have her forever frozen in time.
Frozen, may not be exactly the right word, since I can go back in time and see her as she was over the years. As I think of her on her birthday, I can’t help but go back to her first birthday party…
We were living in Michigan at the time and as a first time mom with a kiddo turning one, I wanted nothing more than to throw the best first birthday party. The funny part about a first birthday party is that it really seems to be more about the parents than the child. I don’t think any of us can actually “remember” our first birthday. Yet, I know countless parents who throw over the top soirees for their little ones.
I wouldn’t say that we went over the top; it was really just family and some neighborhood friends that came over for Rylie’s party. I didn’t have Pinterest inspired buntings and decor. There were not any games or favors for the guests, but I did want it to be “just right”.
In preparation for the party, I cleaned the house - sweeping, mopping, dusting, and shoving everything that ‘didn’t have a place’ in a closet (silently crossing my fingers that no little people would open said closets). We went to Costco and bought large quantities of meat to grill and prepared side dishes. In an effort to make the event super sweet and loving, I started a scrapbook which had pictures from Rylie’s first year. I put it out for guests to look through and had full intentions to add to it each year and have it present at subsequent birthday parties (ha, ha!).
I made a 9x13 sheet cake, specifically for Rylie. It was intended for her sweet chubby fingers to dig into and make the obligatory first birthday cake mess.
Everything seemed to come together for the event, but since I had a one year old and family in town for the party, I’ll admit I was a bit frazzled. Not long before the party was scheduled to start, I was running around doing last minute preparations. I frosted Rylie’s cake in bright pink frosting and wrote “Happy Birthday Rylie” on it. I set it on the counter, while I attended to a few other tasks and waited for Ziggy to return from a last minute trip to the store.
As I picked up a few rouge items that found their way out of the closets and drawers, I walked past the kitchen and saw our 90 pound yellow lab with his paws on the counter and pink frosting on his snout. I lost my mind! My father-in-law came running when he heard the choice words escaping my mouth and we shooed Pilsner away from the kitchen.
I stood staring at my 9x13 cake, tears flowing and not-so-silently cursing the dog. Finally I determined that I could cut off the part he’d gotten into and reshape the cake. So I set about the task and refrosted the portions that had become exposed in the trimming process. I moved the now more 8x8 cake to the back of the stove and went to change for the party.
A little while later, I heard some suspicious noises and found Pilsner was still able to reach the cake and had taken to eating more of it! More words were uttered and tears were shed, but I was determined to save the cake. Rylie’s cake was shrinking.
It happened again… apparently when one is focused on throwing a perfect party, one loses common sense and doesn’t realize that said yellow lab likes pink frosting…
Each time Pilsner got into the cake, I lost my mind a little more.
Ziggy likes to tell the story with a slightly different flair. Although he wasn’t at home to witness the magical shrinking cake and the very pink faced dog, his dad met him in the driveway with a word of warning. My father-in-law took the ice and beer from Ziggy and shoved him in the house to deal with me - the crazy lady that was convinced that the party was going to be ruined! I mean, how could I possibly throw the perfect first birthday with only a 4x4 cake for my little one to gorge on?!?
Luckily Ziggy has a way of calming me down. He reminded me that she was one and truly didn’t need a huge cake to make a mess in. Then he pointed me towards the cute cake we’d ordered for our guests and gently reminded me that no one would leave the party without a slice of cake. Then he set about rescuing the dog from my wrath.
This is a story we like to tell a lot. While it’s less about Rylie, it still is a fixture in our memories of her. Sweet Rylie had no idea that she was supposed to have a big pink cake to dig into. She was just happy to sit in her high chair, the center of attention, and stare at the pink square in front of her. With encouragement from the crowd, she tentatively stuck her fingers in the frosting and tested it out. Much to her delight, and probably that of most little kids, she was met with cheers. She gave us a skeptical look, but with some more encouragement she dug in. It wasn’t often that she got to indulge in that level of sugar.
While a cake doesn’t make a party, it sure has the ability to make the celebrated person feel special. Tomorrow, we’ll be at 105 West Brewing from 5-6:30 collecting items for “Birthday Bags”. We’re building these bags with goodies that can help struggling families create a special day for their loved ones. For more details on what we’re collecting and when we’ll be at the brewery, check out www.ryliesark.org/events. Stop by, have a beer (tips are donated to Rylie’s ARK), and let’s tell some cake stories!
Rylie always had an entrepreneurial spirit. I truly can’t think of a time that she wasn’t scheming about building or creating something. While I don’t think she ever had a successful lemonade stand - probably more the result of me not having the supplies in the house - she often found workarounds to this.
I’ll never forget the day that she set up a “sale” in our front yard. It was a hot summer day. She was bored and decided to make the best of things. With no lemonade supplies to be found, she scavenged in our garage. If I remember correctly, we’d recently cleaned out the garage and unearthed a set of plastic shelves that were less than sturdy, landing themselves in our ‘garbage’ pile.
Rylie saw the shelves and saw potential. She grabbed the pieces, set them up at the edge of the yard and went about finding things to display and sell on them. Most of the items were things that were found in the recesses of her closet, or the ‘garbage’ pile in the garage. A few things were pilfered from her brother’s room. Some were things she’d created, like painted rocks.
I think she realized some painted rocks and random assortment of other things, just weren’t going to cut it, but it didn’t dampen her spirits.
As a kindred entrepreneurial spirit, one of my fondest memories was brainstorming business ideas with her, especially the time she came up with “Under the Blanket”.
Rylie was a late bloomer when it came to reading. She struggled with phonics, but once she got the hang of it there was no turning back. She loved to read - she’d hide herself away with a good book for hours. Somehow I could never quite justify getting mad at her not doing chores, etc. when she was reading - a fact that Tanner likes to remind me of when I give him a hard time about getting lost in his games. But that’s another story…
I distinctly remember Rylie falling in love with the book “Pie”. She must’ve read that book ten times! It was during one of those readings that the idea of Under the Blanket was born. We’d gone to the library in search of other books to diversify her reading list when she noted that book stores were a dying breed.
As we talked about the effect of libraries, Amazon, and Audible on the book business, Rylie declared that there was still a place for a bookstore. She decided it just needed to be revamped.
Her vision was to buy a house in an old downtown, mainstreet, type area. The house would be as old as the town and have a wrap around porch. She was going to use the character of the house create a unique bookstore where each of the rooms had a specific theme.
The kitchen would house cookbooks and books on food, nutrition, and culture. There would be mugs and an assortment of teas, coffee and pastries for purchase.
One of the bedrooms would house the fairytales and other children’s books. It would be decorated like a little kid’s room complete with floor pillows and tents in which readers could curl up and read their books out loud like they were meant to be.
The living room would house histories and biographies, as this is the room that best symbolizes the sharing of stories with people we know and love.
The wrap around porch would have rocking chairs and baskets with blankets; inviting readers to curl up with their mug and a good book. It was as she described the front porch to me that she decided her store would be called “Under the Blanket”.
She speculated that by creating a space that invited people to slow down and connect with the books they were reading, she’d be offering something that the online booksellers and libraries could not.
That night we’d talked about sitting down and outlining the details of her idea. We talked about the costs of owning a business, the overhead and the infrastructure. We talked about understanding the market and finding a niche. I think she may have been on to something!
Over the next few days and weeks Under the Blanket was the topic of conversation and dream sessions, but life got busy and it got sidelined.
While Rylie was in the hospital and after she died, we reminisced a lot about things that made her unique and Under the Blanket became a topic of conversation again. While we knew that creating Under the Blanket was not in the cards at that point, we’d been talking about how to honor her spirit. Then the idea of starting a Little Free Library was born.
As we planned her memorial, we knew that asking for books in lieu of flowers was the way to go. We enlisted my dad, who loves to work with wood, tinker and build to create a Little Free Library structure.
It was a labor of love, but my dad, with my mom as his apprentice, built a fantastic house, complete with ‘rooms’ to house Rylie’s Little Free Library which we have affectionately named “Under the Blanket”.
Rylie’s Little Free Library has been in place in Festival Park in Castle Rock since November 2017. Every time I’m in the area, I stop by. It is such a gift to see people scattered around the park with a book in hand. When we stop to fill it, there’s almost always an opportunity to connect with others - sharing Rylie’s story, or talking about books that transport us and fill our minds with new ideas or whimsy.
Earlier this summer we took the library down to do some much needed maintenance. Under the Blanket got a fresh coat of paint and some new hardware among other things. I think Rylie would get a kick out of our choice of color for the doors and trim - it’s almost identical to the color of her bedroom walls! There are a few more upgrades still to come, but we knew it was missed by many, so we got it back up and running as fast as possible.
We’re excited to say that it’s back at the park and is being filled regularly. Although it isn’t life-sized and we can’t quite sit on it’s porch under a blanket with mug in hand, we invite you to come by, slow down and get lost in a good book.
Lately I can’t quite find words to express what I’m feeling. Maybe it’s unsettled. Maybe it’s anxious. Maybe it’s ambivalent. None of them seem quite right, and sometimes neither do I.
Not only can I not name the feeling, but I can’t point to what is causing me to feel off-kilter. Hmmm… maybe that’s the right word - off-kilter.
There have been countless times lately where the most insignificant decision seems insurmountable. Something like what to make for dinner, might as well be what to pack if I were climbing Everest. Decisions that are a little bigger, yet have no lasting impact, like where to travel or how to get there also have an Everest equivalent.
There are days when decision fatigue makes sense. At times like right now, however, when things are good in my world, it just doesn’t.
Recently my family willingly spent the day driving the backroads with the top off the Jeep and paddle boarding. I had moments of pure joy with my face upturned and the wind sliding over the windshield tugging at my hat. There were moments of laughter as we watched Ziggy balance, or not, on a paddle board. And moments mixed with giggles and trepidation as we almost had our very own version of paddle board demolition derby.
For some reason though, I was off-kilter. For, not the first time that day, I was on the verge of unexplainable tears.
As I process these moments where things don’t feel quite right, like I’m not quite right, I wonder. I wonder about those moments when I don’t seem to be feeling the right emotion for the situation, or the moments when I can’t seem to make a trivial decision. I wonder what’s going on.
In the last year or so, I’ve done a lot of counseling but through it all, I never really asked about my “diagnosis”. I think of all the people I know that battle anxiety, depression, and so much more. I wonder if this is what it’s like - being seemingly unable to name, to control, to turn around. I wonder if perhaps these are the words I’m looking for, but then I wonder if it really matters.
Sure having a name for an emotion, or a condition, can be helpful. It can level the playing field and make communicating what’s going on a little easier. But it also feels a bit like an illusion. It gives the illusion of having everything fit in a pretty little box and having everything under control when in fact everything seems like it is precariously balanced and about to topple over.
I wonder what would happen if I just embrace the off-kilterness instead of trying to explain it away. Maybe it’s not the naming of it that’s the issue. Maybe it’s more the desire to explain it away. What would I discover about myself? About others that I interact with?
I wonder how many other people, at this exact moment, are struggling to name or understand what they are feeling. I wonder how many are trying to explain it away or pretend that it’s not an issue. I wonder if they feel like they are balancing on a tightrope, juggling chainsaws, all while trying to convince themselves, and those around them, with a plastered on smile and perfectly tailored outfit that they’re ‘just living the dream’.
All of these wonderings lead me to look for a solution. Only things have changed. I no longer want to explain it away. I no longer want to pretend.
That would’ve been my solution before. Instead, I want to start a conversation.
I want to be able to openly tell someone that my tightrope is sagging. That my outfit is riding up in places it shouldn’t. That my cheeks hurt from a fake smile that isn’t reaching my eyes.
I want to be able to openly tell them that on this day, the sagging tightrope, too small outfit, and dull smile are just as good as it’s going to get. I want to be able to tell them that I hope tomorrow to be able embrace these challenges and see it all as an adventure, but if I can’t that is okay.
I dream of sharing these off-kilter moments honestly and unpolished (I have some work to do here!). I dream of laying shame aside and answering the “How’s it going?” question with truth and without discomfort for either of us. I dream of doing this as a way to invite others to share their off-kilter moments too.
Think of what will happen when we share our burdens rather than trying to cover them up. Imagine knowing that the person sitting next to you also wonders why they have wiped tears from their eyes five times today without any tangible reason. Imagine knowing that the person at the desk next to you or down the hall from you, is just going through the motions even though they seem to have it all together.
I dream of a community where it’s okay, and even encouraged, to be real, without reservation, without judgement - with nothing but open hearts and desire to realize that we’re all battling something.
I am really good at hiding. Both hiding in plain sight and literally hiding, like in a closet. As I type these statements, I can’t help but wonder why. What lead to this ability to hide? In some ways, I think it has been a survival mechanism.
Growing up, my family moved pretty regularly. Because of those moves, I got good at meeting people and being able to find my place on the outskirts of the social circles, but I also learned not to invest too much into those relationships because within a few years, we’d be off to another state. We didn’t have social media, so staying connected required good old fashion pen / paper letters or long-distance phone calls (remember those days when the phone call cost different amounts based on how far away you were?).
In most cases, the relationships I’d developed weren’t strong enough to withstand the extended effort required to maintain them. So I cultivated the skills that allowed me to seem like part of the group, without actually being part of the group - hiding in plain sight.
When I was younger, I also developed the habit of hiding, literally hiding, in my closet when things were tough. I have no idea what led to this habit, but it’s one that I still revert to. When things get really hard, when I don’t understand the emotions I’m feeling, or when I’m embarrassed about something that I’m experiencing, I revert to this tactic. I find comfort in the dark corners of the closet with the clothes hanging over my head. I curl in close and attempt to hide everything, even from myself.
As I’ve gotten older, I’ve developed another hiding tactic. I hide by immersing myself in ‘work’. At times, it has truly been by immersing myself in my job. Other times, it’s hiding behind a to do list or checklist so long, it would take weeks to even make a dent.
There have been times in my life that this survival mechanism of hiding in plain sight, on the fringes of social circles, or under a pile of work, have served me well. However, I’m realizing, this week especially, that although it is easier to do this - it’s not necessarily the right thing to do.
The twenty-eight days between April 29 and May 26 have changed for me forever. They are hard days - reminders of what could have been. I don’t know that they’ll always be as hard as they feel right now, but I think they’ll always be a challenge in some way shape or form.
It’s really no coincidence that Rylie’s Run falls right smack dab in the middle of those 28 days. Initially, it was planned that way because it made sense. It was the first anniversary of the accident and Rylie’s death. Mother’s Day would be a tough day for me. We wanted to do something to commemorate Rylie and all that she was and still is. It gave us a purpose for those days - something to focus on besides the loss.
Underneath all that though, I think subconsciously, it also gave me a place to hide. The busyness of planning and holding an event seemed like a good use of energy that would often feel erratic or misplaced. Last year, it served me well.
This year, it also served me well, but I’m feeling it differently. This past week has been tough. We’re a little over half-way through the 28 days, but up to this point, I have been so busy with the event that I haven’t given this time period much thought.
You see, I was successfully ‘hiding’ behind the tasks associated with Rylie’s Run and avoiding feeling the emotions that go with this month. Now I’m left with this stretch of days before a big ‘anniversary’ and I have nothing to hide behind. Not even a plan for that day.
Last year, I was planning the run and wrapping up a school year. So when the run was done, I shifted my focus to grading and finals - hiding once again. This year, that is not the case. I’ve been blessed with time off, but that means this year I’m faced with time and nowhere to hide.
I can see the date looming in front of me and I don’t have a plan. There’s no to do list, there’s no ‘work’ that has to be done. I find myself thinking up imaginary ‘work’ projects around the house, or real ‘work’ like all of the wrap up tasks associated with the run - but there’s not the same urgency as an event with a specific date, or final grades being due.
In a way, I am glad. If there was that level of urgency, then I know I would run and hide in that busyness. But since there’s not, I just find myself just looking at those things and not moving towards them at all. This all feels very unnatural for me. While I know in my head that this is okay, even healthy, I feel as though I am moments away from running into the closet to hide in the corner beneath the clothes.
I don’t want to revert to hiding, but it’s also really hard to face this weird emotional place - especially when I’m so used to hiding.
I’m not sure what to do, or how to do it, but I guess I’ll take it one moment at a time.
Perhaps the point, this year, is to allow myself moments - moments to feel the enormity of our loss. To peek out from underneath the clothes in the back of the closet, maybe even crack the door and chance being seen - really be seen.
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.