So to let you know, Heather is busy fixing dinner for the phews and the rest of us so she asked me, Popsi/Rick to do the update for Cynde. So, this will not be as great as Heather’s writing, and we wanted to get the word out.

Well, it has been a long day for all of us. We got to the hospital at 5:00 am to go through all of the presurgical issues and they wheeled her off to surgery around 8:15. We did hear much from the surgical team except periodic texts indicating they were doing the procedure. Heather and Bart showed up along with Cynde’s friends. Heather brought a jigsaw puzzle, so we passed the time away with the puzzle. It was good therapy for all of us.

Per Heather’s update, we talked to the surgeon/oncologist around 1:00 and the operative word for the day was optimal. She felt very good about the surgery, and it accomplished what she had hoped for. The next step was the Hyperthermic intraperitoneal chemotherapy, HIPEC. This was designed to destroy hidden cancer cells. This process lasted two hours, so we had additional time to work on the puzzle!

I received a call from the doctor around 3:30 that they were done with procedures and were taking her to the post op unit and Heather and I got to see her around 5:00. Cynde was wide awake and fairly talkative. At this time the surgical team had left so Heather and I gave her the summary and of course the optimal word was used. Cynde is much relieved this is over and was resting comfortably. She is waiting for her room on the surgical floor, and her pain is being managed. She is happy the surgery is over.

I decided to go home (Cynde insisted actually) to get a good night’s sleep and be ready for rounds tomorrow morning at 7:00 am with her doctor and team.

The only downside of the day was we didn’t finish the puzzle – not really a downside and we left it one the table for someone else to finish!

We’ll find out more tomorrow and will provide an update. Thanks for all of the well wished, prayers, words, support, etc.

Love

Rick

Hi All:

This might be one of 3,627 updates by the time we get through today. 🙂

It is 9:10 in Denver. Cynde’s procedure started at about 8:20…and so we wait.

Hospitals are funny things when it comes to waiting.

We wait to go home.
We wait for answers.
We wait for the next step in the journey.
We wait for someone to walk through a door and tell us what comes next.

Cynde has done everything she could to get herself to this day. She made it through three rounds of chemo, TPN, countless appointments, scans, blood draws and more than a few bumps along the way. Today, her job is to sleep while an incredible surgical team does its work.

Our job is to wait. And love her.

Pops is doing okay. The nurse will be texting him updates from the operating room, and we will post as soon as we hear anything.

Thanks for waiting with us, dear Tribe. There is something incredibly comforting about knowing we aren’t sitting in this waiting room alone.

AND…if you want to text Pops, I’m sure he would love reading your good thoughts, prayers, inappropriate jokes, distractions and words of support. He probably won’t text back today, but I promise he’ll love hearing from you.

Here we go. ❤️

Good morning, Lovely Tribe —

This post will be a little short.

The last round of this first series of chemo went well. Cynde is feeling a little weak, but she is in great spirits and continues her mantra: “I can do hard things.”

She had a CT scan on Wednesday to see how the cancer has responded to chemo and help determine what comes next. She and Pops meet with the oncologist today (Friday), and I’ll update this page as soon as we know more.

For now, she has both a surgery date and another chemo appointment on the calendar. Which direction they go will depend on what the scan shows and what her oncologist recommends today.

All is good. Pops is fed. And we continue to live by the saying, “No news is good news.”

So, for now, we wait.

Fingers crossed for a positive report today. ❤️

I giggle as I write this post.

Because Ryan was not the rebel above, or maybe towards the end he was 🙂

I had the amazing honor to spend the last couple months of Ryan’s life right next door. I would come over in the morning and we would make coffee. In the evenings, he would sit at the counter while I made dinner. He would advise, I would cook.

We listened to music while we fixed dinner and I discovered that U2 was his favorite band. How did I not know, after 51 years, that we were both fans of Bono?

What you learn when you need to learn.

I would stream the Pandora U2 channel (I know, so old school) and other 80’s songs would come up. I was sautéing chicken when Simple Minds, ‘Don’t You Forget About Me’ started playing.

I turned it up.

“Ryan, this is yours.” I said, “Don’t you forget about me! How could we ever?”

The song continued……..As you walk on by, will you call my name?”

If you are GenX, you know this song, we were this song.

Ryan’s speech was a little rocky at this point but there was one part he could definitely sing….and so I picked up a cucumber designated for the salad and we both sang together….

I sing, “La, la-la-la-la, la-la-la-la
La-la-la-la-la-la-la-la-la-la
La-la-la-la, la-la-la-la
La-la-la-la-la-la-la-la-la-la
La-la-la-la, la-la-la-la
La-la-la-la-la-la-la-la-la-la”

Our cucumber microphone ended up in the salad. I added a couple tears to the dressing, just for taste.

We could never forget about you.

For those who missed it- here are my words from Ryan’s service:

A couple of weeks ago, I was having breakfast with my nephew, Beck. We were just chatting about life when he asked me what my first childhood memory was. Without hesitation, I told him, “It was the day my parents brought my baby brother — your dad — home from the hospital.”

It sounds like a sweet, endearing memory. It wasn’t.

It was Christmas Eve. And I had asked Santa for a sister.

Instead, I was introduced to this tiny, swaddled little bean —
a brother — laying on my parents’ bed.

I was told to be quiet.
I was told to be gentle.
Don’t hit the baby.

And I remember thinking…
I had been sold a bill of goods.

But I was wrong.

Ryan and I became fast friends, despite a few minor annoyances.

Baby Ryan loved books.
Loved them.
Devoured them.

My Pokey the Little Puppy book still has tiny gummy teeth marks along the cover
where my teething brother found a little relief.

Ryan was a little late to speak.

On one trip to the pediatrician, my mom shared her concerns,
while I confidently told the doctor:
Ryan’s favorite color,
his favorite bedtime story,
and what flavor lollipop he would want after his shots.

The doctor smiled and told my mom she had nothing to worry about —
Ryan just had an overzealous, chatty older sister.

And then one day,
he started speaking in complete sentences.

That was Ryan.

He observed.

He waited.

He watched the world carefully.

And then — when he was ready —he acted.

And once he acted, he was unstoppable.

Ryan skied beginner runs… and then suddenly, moguls.

One day he couldn’t ride a bike,and the next day he just got on and rode.
No help.
No hesitation.
Just rode.

At ten, after trying soccer, baseball, and basketball, he found football.

And when he found football, he found himself.

Ryan bloomed into a strong, gifted athlete.

Watching Ryan grow into who he was meant to be
was like watching a sunrise —slow at first, peeking over the horizon,and then brighter,
and bigger, impossible to ignore, illuminating the landscape and bringing the day.

It was fun to be a sister to the sun.

Shooing off friends who had a slightly inappropriate crush on my brother…

Skiing with the guy everyone watched and cheered from the chairlift…

And seeing this once-shy, book-eating kiddo become a kind, confident, strong young man.

We were watching home movies the other day.

Young Ryan was dashing, and the memories were bittersweet.

His caregiver remarked that it was great to see Ryan in his first body.

Ryan’s first body.

If you knew him in his first body, it’s easy to say…

I wish you knew Ryan when…

When he hiked the Wind River Valley.

When he rafted the Grand Canyon.

When he traveled the world with his beloved wife.

When…
When…
When.

But if you knew Ryan —no matter his first or second body —

If you knew Ryan, you knew Ryan.

You knew the athletic man in different ways.

A man so strong that even when he couldn’t feel his feet
and his quads weren’t firing, he insisted on walking.

He walked with a teeter, a pirouette,
a couple pivots…navigating the space,
staying upright when his entire body was telling him to fall.

He kept walking.

If you knew Ryan, you knew the man who summited Wheeler Mountain
just this last summer, 13,000 feet in elevation, one step in front of the other,
surrounded and supported by a devoted group of friends and family.

If you knew Ryan, you witnessed the coordinated dance of a father with a baby in a Bjorn,
restraining a toddler from a flight of stairs, and folding laundry, all while fixing dinner.

If you knew Ryan, you placed your hand in his and felt that familiar, crushing grip…a strong man who could not feel his hands but just wanted to know your hand was in his.

He looked you right in the eyes and told you thank you.

Never mind that he was seeing double or triple vision.
Never mind the pause as he coordinated the words between a tongue that no longer communicated properly with his brain… He held your hand and he thanked you.

Ryan may have had a first body and a second body, but we all only knew one Ryan.

Strong.
Determined.
Funny.
Kind.
Fiercely brave.

In trying to write these words about my brother, I asked,
What is the purpose of a memorial service?
Why are we here today,
in this sacred space,
to honor this amazing human?

A lot of answers came back.

But one word stuck with me; Transcendence.

Going beyond the ordinary.
Surpassing limitations.

And if anyone knew how to do that, it was Ryan.

Ryan spent his whole life going beyond expectations…
beyond limitations…
beyond what his body told him he could or couldn’t do.

Whether climbing mountains, raising his boys,
or simply insisting on standing
when standing was hard ,  Ryan kept going.

And that hasn’t stopped.

Because the very best parts of someone. don’t stay behind.

They move forward.

They live on:
in the people they loved, the family they built,
and the community they shaped.

And that brings us back to why we’re really here today.

We’re here for each other.

For Jen —who lost her husband, her person.

Reach out.
Take her for margaritas.
Sit with her.
Text her.

If she doesn’t answer, try again.

Tell her you love her.
Make it awkward.

Call me if you need recommendations.
I’m a pro at awkward.

To my beautiful nephews —you move forward carrying the best parts of my brother:

grit,
resilience,
strength,
and kindness.

And to the village Ryan built:

Throw the ball.
Share the stories.
Offer the advice.
Fix the bike.

Help with the math…because again…so. not. my. lane.

And to my brother.  I will miss you forever.

I’ll probably still call on you for advice every once in a while…like how to navigate being the only living child to four parents.

Seriously… don’t stay silent on that one.

And how to be kind.

How to be brave.

And how to face life’s biggest challenges head-on with beauty, grace, and humor.

I love you, my brother.

And we will carry you forward.

Godspeed.

Today is Rare Disease Day. The marking of this disease feels particularly stabby as we reel from the loss of our dear Ryan; Husband, Father, Son, Brother, Cousin, Nephew, Friend.

It has been a while since I posted. The last four months have been fully committed to my brother and his family and I don’t regret a second of that time.

Life is short and precious. If you have the gift of knowing your time with someone is limited, embrace every single moment, double, triple embrace it.

As we move forward, I will write more about these precious months. Thank you, dear tribe, for giving me the grace to disappear- the notes, the texts, soup, flowers and love. Ya’ll are the best.

Oofta! This site has been neglected! My writing brain has been consumed with my side gig, writing for TWO local publications. It’s fun to see your name in print. And super fun when you get to write about the people you love.

Nod to a Phew here. And nod to a sport that has earned my respect- here is one of my latest articles:

It’s football season.

Those three words make some of us giddy; the excitement of a game at Empower Field, cheering the Buffs, or following our favorite High School player, many of us wait all year for this time.

In early August, you can find coaches Tim Sexton, Joel Diebel, Seth Guenther, Matt Reinick, Chris Gregoire, and Chris Slape on a field in West Arvada, surrounded by about 30 enthusiastic middle school boys ready to play football. They are the Arvada Youth Wildcats and they have been waiting since they made the playoffs last November to play again.

Finally, finally summer is almost over and it’s football season.

Coach Sexton watches as the boys do push-ups and burpees to warm up. “We’re all dads with kids on the team. Some kids have been playing together since they started flag football when they were six. Now here we are, it’s been fun to see the team evolve.”

Tim grew up in Arvada, played football for Arvada and went onto play for UNC. He’s known some of the other coaches since high school and played against them on rival teams. There is usual banter; Arvada vs. Arvada West, who really was the better player, and who now is better looking. But when it comes to coaching and instilling a sense of pride for their team, the Wildcats are all on the same page.

“Coaching a team, coaching kids, coaching colleagues, it’s a similar philosophy. Hard work pays off, know your goals, focus and work towards those goals,” says Coach Sexton.

Life skills are taught on this field. Collaboration and communication are essential. All players need to know not only their role but where each team member is supposed to be during a play. “Egos are checked at the door. When we’re here, we are all part of a team with one goal.”

Good coaches are fundamental to this process and the Wildcat coaches know how to balance each other out. “We have very different personalities. Some of us are tougher on the kids than others and that works well for certain players and at times we all have to be tough. We want to equip these kids with the tools to get through those tough times on the field and in life.”

Warm up is over and practice starts. Offensive teams go with the offensive coach and Defense heads off to their part of the field. Each coach knows each player and provides feedback; where they need to be, what’s not quite working and what they are doing right. Players listen intently, learning the consequences of their actions, both positive and negative.

“We want all of our players to be successful. If they don’t know what to do, we need to look at ourselves as coaches.”

90 minutes is over, and the team gathers together to talk about what went right and where things need to improve. Coach Sexton, Diebel, Guenther, Reinick, Gregoire and,  Slape call out players that had a good catch, a good tackle, a great assist. And everyone cheers for that person.

At the end of practice, these 13-year boys walk off the field carrying their helmets, they fist bump and high-five each other. They are tired and smell like 13-year old boys.

And they can’t wait for the next practice.

And that is why we love football.

2023 was fun. I didn’t know it would be fun but the culmination of 365 days turned out to be pretty amazing.

There are many quotes about it being never too late to invent, or reinvent yourself. This last year, I really tried to be serious about my writing. Not just writing about me, and my grief and my story and my………….

But writing about you. And your story. And what makes you get up in the morning.

Turns out, I might just be okay at this. When I look at 2023 and hundreds of pages of content, my most proud moment was when Catholic Charities of Baltimore trusted me with their year-end appeal. Here is my letter on behalf of Catholic Charities.

This organization is amazing- they serve so many in need. I was very proud to tell their story.

Onto 2024! Need a Freelancer? Happy to be your person 🙂

I love my side writing gig. It is a thrill to put community stories to print, especially when you get to write about Paralympian Zach Miller.

Keep being awesome Zach!

Hi All! I had the honor of writing about one of my favorite nonprofits MaxMods, in a local publication. Here are the great things they are doing to bring the Holidays to everyone 🙂 You can donate at http://www.santaslittlehackers.com

As I have been called upon to deliver the Phews to multiple events, my character has come into question.

Apparently, I drive too fast.

I’ll take this. I’ll hand it back with the fact that everyone else drives too slow. Not you. You, dear reader are a great driver.

But yes, everyone else drives way too slow.

And then there is the question around my language.

I guess I say the F-word.

A lot

There was a vote among the family……Who says the F-word most often?

And I won, or lost. Apparently among all of the adults in the family, I say the f-word most often.

“What the F$ck?” I said to the Phews.

No really, I didn’t say that…..but I really wanted to.

Instead I said, “Well goodness gracious, that’s a shocker. Whatever could have come to that decision my little muffins?”

Okay, I didn’t say that either…..but somewhere between the two came the truth…..

“Really? I say it more than anyone else?”

“Yes.” Said all the Phews.

“No kidding?”

“No kidding.”

And I had two thoughts. One thought was that I needed to curb my vocabulary among the Phews.

Second thought? Fuck it. When I think of how I want to be remembered…..the creative use of the F-word may not be a terrible way to be memorialized.

And yes, everyone else drives way too slow.

My family huddles well.

Sadly, I believe it’s because of years of practice, but we do this well. We lean in, call in reinforcements (thank you!) and try, as best we can, to help each other out. It is here that I am always reminded of what family is- it is here that I find who we are and the glue that bonds us together is solidified.

In the last month, I’ve spent some time with the oldest Phew. We are right at the cusp of boy-hood and teenager-hood and man-child and all of the things that clingy Aunties are not good at. Oldest Phew (OP) is growing up.

My job as of late is to take OP to football practice. We have bonded over music that gets you ready for football practice. Eminem, Kanye, Drake……angry music that I love but triggers my Auntie radar….just a bit.

We pull into the practice parking lot; OP jumps out with his football gear. I gather myself, turn off Eminem, get my thermos of tea, extra coat, foldable chair and try my best to be cool.

You only get one shot, do not miss your chance to blow. This opportunity comes once in a lifetime, yo.

Yesterday OP and I went to the Bronco game. Denver lost but we had a great time. OP studied the starting line, recited stats, called plays, high five’d. We each got pizza and a giant lemonade.

I sang karaoke to Vanilla Ice….because I still try my best to be cool. Collaborate and listen, Ice is back with my brand new invention

Walking back through the post Bronco game crowd is nutty…..lots of hyped-up people who may have been over-served in the last 6 hours. We got to our parking lot and there was that guy. That angry drunk guy…… that guy who picks fights with people who just want to get home in time for 60 minutes. That guy was yelling at another car, pounding on the windshield…..I steered OP in the other direction.

We jumped in our car….”hang tight Bubs, lots of people making some bad decisions here.”

And we lined up to get out of the parking lot.

Angry Guy jumps in his Subaru, backs up 6 inches towards my car and tries to cut me off.

I honk.

Angry Guy starts an animated non-verbal conversation aimed at his rear-view mirror.

Angry Guy is drunk.

I take a picture of Angry Guys license plate. Fortunately, Angry Guy has been such a douche, I have many witnesses in my favor. But Angry Guy is hating me- OP and I watch barrage of hand gestures.

Perhaps Angry Guy realizes if he continues, he is going to draw more attention to himself from authorities.

This would not bode well for angry guy.

So he pulls to the side and lets me pass. I forget my window is rolled down.

“YOU’RE WELCOME!!!!” Angry Guy yells.

I don’t acknowledge but try to navigate the line. Angry Guy cannot contain himself. He gives his middle finger a kiss, points it at me and yells out, WHORE!!!

Whore? Well, let’s take it back it up…….I’m a 52 year old, white haired woman, driving an SUV with a child in the back. I could represent a lot of insults but this one? Okay.

I yell back, “Seriously. Knock it off. My kid is in the car.” Ironically, this shuts Angry Guy up.

OP and I continue to navigate traffic. I explain that I engaged a bit too much with Angry Guy. I should have ignored him.

“Are you okay that I called you my kid?”

“Well yeah….you’re my Aunt…”

“Thanks buddy. It takes a village.”

Would I have been uglier had OP not been in the car? Probably. I can go Ape Poop with the best of them. But every time I wanted to toss an F-bomb I was reminded that someone was watching- this kid who I adore and someone who I always want to be my best self with.

The best way to be cool was to be cool.

Thanks Kid.

Mitochondrial Awareness Week is coming to a close and I am late in posting. This is not to say this week, and this disease has not been on my mind. Like many times before, this stupid disease sits in the corner of my life, farting and belching, creating a stink, and reminding…….

I have often said this disease could suck my big toe.

Which is ironic….

The big toe thing.

Mito symptoms present in so many different ways, seizure, muscle weakness, tummy issues, heart issues…. you never know which cells and body systems will be impacted.

One issue for my Bro is nerve cells- he has quite a lot of neuropathies in his hands and feet.

Think about your hands and feet. I am thinking about mine right now as my fingers tap my keyboard, my foot kicks absent-mindedly at the edge of my desk. The nerves in my hands and feet remind me when I kick too hard or do something awkward.

‘Ouch, that hurts.’

Our nerve endings protect us from ourselves.

We learn at an early age that the stove is hot, ice is cold, we have to pick up our feet or we will stub our toe. But when you no longer feel anything at the tip of your toe or on your little pinky finger, you don’t realize when you damage those tiny, fragile appendages.

Bro can’t really feel below his knees. That’s a lot of body to maneuver without feeling. Feet get heavy and hard to lift, or they lift too fast, and toes get stubbed, again, and again.

Or, a toe gets broken, but that toe can’t feel anything, so that toe can’t tell you it’s broken.

Bro’s Toe broke a couple months ago. But because the communication between Bro and his Toe is also broken, Bro’s Toe couldn’t yell loud enough to be heard.

And like many unheard toe’s, Bro’s Toe got infected.

Infections are terrible, intrusive beings. And like any unheard infection, the one in Bros Toe moved, squirmed, bartered and manipulated its way into the bone.

Big Toe Bones don’t like to be infected.

Bones don’t like to be infected. And as much as we would like to think that our bones are hard and calcified, bones are quite vascular and dependent on blood flow.

And because infections like nothing more than to spread to other area like further bone and vascular highways……. the infected part of Bros Big Toe needs to go.

Adios y vaya con dios.

This Little Piggy went to…..

And I joke. Because this is what you do when this sucky ass disease that can suck my big toe infects Bros Big Toe.

You tell Toe jokes.

In all seriousness and support, Bros Toe goes on Tuesday and Bro will be non-weightbearing for a while.

All toe jokes, toe memorials and words of support can be posted here or on social. Bro would love to hear how much you will miss Bros Big Toe.

Please PM me if you would like to help in other capacities. I will be setting up ways to help soon.

Love this tribe.

And this disease can still suck my big toe.

Something happens to the older sibling.

We don’t ask for it. We don’t really anticipate it. But somewhere in our early life, someone plopped a squirmy, warm little cherub in our lap and said that this was our little sib and it was our job to make sure they made their way in life.

Which is natural.

Not.

Because really, we’re like 2, 3 maybe 4? And this little person is set in our little laps.

And we don’t know enough to question.

But everything set before us had a reaction to an action, we push it and it squeaks, we hit it and it lights up, we bite it and it tastes good.

And our parents set their next precious little in our lap.

Push? Hit? Bite?

“No, love your little brother, give him a kiss.”

Love? We really haven’t figured out the potty but no matter.

And the Grandparents flash the kodak camera and go smoke a ciggy.

Because it was 70’s and anything goes.

My Little Bro was plopped in my lap at 1974. To give the elders grace, they did make sure your diaper was clean, that you were fed, and your head smelled good.

They also knew I was a pro at going wee in the potty and not on the baby.

Well played 70’s parents.

Well played.

Your head smelled amazeballs….better than it ever had in future scenarios. And I was hooked.

You became my little brother.

I became your big sis.

And that was it. Forever in my life, once you were plopped in my lap. I am your keeper.

A keeper in the late 70’s, early 80’s meant that there was cereal in the pantry. That the milk had not turned, that someone had the key to the front door.

That we had a quarter to call a friend…..or play PacMan, your choice.

And we did it. Us two. Our young parents got divorced. It was a bit ugly. The dog died.

But we still had cereal. The key still worked. And somewhere along the way, we found our way.

You found football. You found it at a young age and I watched this kid who wore plaid pants and a striped shirt turn into a confident kid. A cool kid. An Athlete. You bloomed.

You showed up at my University.

At 16 you announced yourself at a fraternity party as Ryan from University of Washington.

People asked if I had met the guy from UW. Seriously?

He’s my brother. He’s a sophomore at Highlands Ranch High School. And no Kelly, you cannot hook up with him

Didn’t matter Little Bro. You are unstoppable.

Homecoming King, NOLS graduate, Winter Park Jr. Ski Patrol, Gonzaga Crew, best freaking friend, the most amazing dad, loyal brother.

A friend of mine called you James Bond. Of course he did.

And now we are here Lil Bro.  

Today, after 13 years of battling an adult-onset mitochondrial disease, your electric wheelchair is on it’s way.

And after 13 years, I think I am ready to truly tell your story if you will let me.

Ryan, you are amazeballs, and your head still smells kinda okay.

And your boys are good humans….but their feet smell…..seriously.

 And I am your big sister- making sure the milk has not turned.

But Life has turned, as it does. Keep being unstoppable.

I disappeared in May.

I disappear often, which can be a tad frustrating to my tribe. I emerge unpredictably like a rabid squirrel, looking around, wondering where everyone went, only to hear their reply.

‘We thought you had left.’

And I do leave, but I always come back in some unpredictable form or another.

May was sad and awesome and promising and funny and hopeful all in the same month.

Thank goodness for 31 days.

I quit my job in May. I know this is the third job in two years, but 52-year-old Heather is searching for a place to be…..may this next job be my place.
Four days after giving notice, I had a medical issue. An issue in my lady parts. This issue was a bit jarring, and when explaining the whole situation to my mother, her first response was, “Please don’t post this on Facebook.”
Is my blog Facebook? Not really.

So to make this version a little more PG, my Lady Parts will be referred to as LP moving forward.

LP and I had an issue that needed to be addressed quickly. I don’t know about you, but when a problem comes up in that area, I feel like I have done something wrong. Terribly wrong. I dated the wrong boy, used the wrong towel, sat on the toilet seat. Somehow, married at 52, this has to be my fault.

It did not help that LP and I visited my doctor and she requested surgery at the Anschutz campus immediately. I called Hubs and cried. We packed a bag and drove to Denver.

I love that Hubs dropped everything. While driving down, he mentioned that it reminded him of Samantha days when nothing mattered but her health. I cried again.

This was the fifth time this year that I have been under general anesthesia. I hate going under. Me, like my daughter and my grandmother, have been dubbed the ‘Keith Richards of Anesthesia.’ I wake up immediately talking of grand ideas, mashed potatoes, and offering to push my bed back to recovery after a knee replacement.

I’m a hoot.

LP surgery was successful and was followed by my least favorite holiday, Mother’s Day.

I pulled through like a champ.

Graduation weekends were next. Jack would have graduated this year. I was cautious. I picked where I wanted to be, thought through reactions, tended to my LP, and thought I would be okay.

Silly Rabbit.

I think when you are dealing with hard stuff, you should reserve a day in your life to lose your poop….like, really freaking lose it. Ugly cry, grab your keys, jump in the car, turn on the Smiths, and just drive. May 21st was my day. I drove northeast. I have no idea why Greeley, Colorado, was appealing, but that’s where I ended up.

And I cried.

I cried again for a life that is not ours, a club of proud Mamas with graduating seniors. A club I will never belong to.

I cried for me, trying to make it okay when it is so wrong.

I found myself at a church in Mead, walking the labyrinth and ending up at the feet of Mary. She was carved out of marble. Her feet were smooth, barefoot, and unassuming. We sat together and watched the sunset over the mountains.

LP and I returned home. Bruised, broken, tear-stained but no worse for the wear.

Hubs and I left for California two days later to celebrate our nephew’s wedding.

Life does go on; fiercely yet slowly. It crawls, it runs, it hits you by surprise, and it knocks you sideways. Demands you remember, just when you thought you forgot.

And all you can do is embrace it, you and your broken LP, sitting at the foot of Mary, watching the sunset over the mountains.

Yesterday was Mother’s Day.

Mother’s Day and I have complicated relationship.

I love Moms. I love my Mom, I love my friends who are Moms, I love the people who have Mothered me along this road of life. This tribe of women has influenced me, held me on high, approached me with truths at times hard to swallow. We are all in one way or another, continually raising each other.

It is a sacred, magical, heartbreaking place.

It is May and in the next couple weeks many of my dear friends Littles will graduate from high school. I love these kids. I love seeing the young adults they have become, the promise, the glow, the future that lies ahead for them…..

Jack would have graduated this year. I vacillate between dreaming of life that was not ours to live and how the hell could it have been 18 years since so many of my friends and I took that ClearBlue Pregnancy test and realized that our lives were going to change forever.

But we really didn’t realize how our lives would change…..did we? We dreamt of cute snuggly onesis, the best breast pumps, the perfect color to paint the nursery, we lived in dreams fueled by expectations, promises held by a plus sign from a $12 pregnancy test.

Along the way, in these 18 years of life, motherhood held us to the very highest test. We would lose Littles, we would lose Mamas, we would make heartbreaking phone calls. We would huddle and hold each other closer.

And as Littles now go off to find their own world, their own space; what is left is you and I, cheering them on from afar, watching the sky to see what direction they take. Watching in joy, at times in fear, and anticipation as they make their way.

We are all in one way or another, continually raising each other.

All this from a $12 pregnancy test.

I’m a tad late to the party but I could not let today pass without wishing you all a Happy Rare Disease Day!

A rare disease is a condition that impacts less than 1 and 2,000 of us.

Did you know that between 3.5-5.9% of us have a confirmed, diagnosed, rare disease? We are 1 in 2,000. Some of us are 1 in 200,000, some of us are 1 in 2 million, or 1 in 200,000 million.

There are 6,000 known rare diseases and 72% of those are caused by a genetic mutation.

Our mutation comes from the POLG1 gene. It is more common among mitochondrial deviations- it is suspected that 2% of us are running around with a POLG1 mutation and many of us don’t even know it.

Being mutated is no cause for alarm! Like all evolving beings, we all carry genetic mutations. W

e are all our own genetic X-Men. It’s when those mutations become disease-causing that things go awry. And because families share the same genetic soup, disease causing mutations can be far reaching, impacting multiple generations with devastating results.

My beautiful, rare Loves:

The crazy thing within our family is that Rare is that it has made us…….Rare.

This blended family huddles when needed. Holds each other close, rally’s, never leaves an event without saying ‘I Love You’, cries openly, and hugs a little longer.

But we will all say, resoundingly, that being rare sucks. We have endured life-changing losses, ugly cried and cursed the heavens for this sucky genetic lottery. If we are the X-Men, I’m waiting for my proverbial Wolverine.

Rare Disease Day is about families like us. Families searching a cure; collaborating, advocating, fighting for a cure. There are 300 Million of us……suddenly rare is not so rare.

To a cure.

I once told a coworker I needed to marry a skier.

She told me I was being superficial.

“Marriages are based on more than that.”

We no longer stay in touch. But I did, indeed, marry a skier.

My favorite days with Hubs are on the mountains- it is my happy place, it’s his happy place, and I am so grateful we share this. Mountain vistas and powder are a love language.

We had dreams of bringing little skiers into this world.

We did not bring little skiers into this world.

But we did get nephews……poor little nephews who had absolutely no idea the skier expectations from their aunt and uncle.

And then I realized that teaching kiddos to love skiing is hard. Really hard. It’s filled with early mornings, cold hands, sore feet, hauling gear and thoughts of ‘why are we doing this?’ from both adults and kiddos.

And then they get it, just when everyone is about to give up; the feeling of flying, the magical ‘shoosh’ down the mountain, the cries of ‘whhhhooooopppppeeeee’……and your Auntie heart grows ten times; ten times by ten.

My auntie heart grew ten times this weekend. Our youngest nephew, the one we weren’t quite sure if he would love skiing, fell in love with skiing. Like any love affair, this process was fraught with uncertainty, a little fear and finally, joy.

Some of this may have been my fault.

Youngest Nephew (YN) and I were skiing on Saturday- it was time for lunch and we started making our way back to the house for a sammie. The road back was a blue run aptly named ‘Home Again.’ Another skier told me it was a mellow blue, something we could easily manage.

Pshaw.

The first couple of turns were just fine and we slowly made our way Home….Again. We stopped as the road curved and the slope seemed to disappear, meaning it’s a bit steep. Holy Schmoly, not only was it steep but it twisted sharply to the left; over the curve was the ski area boundary and a significant drop-off.

I may have whispered an F-bomb or two.

The nephews call me Hehe, a nickname I love but when YN whispered, “Hehe, I’m kinda scared.”

I may have whispered another F-bomb.

“Buddy, I get it. But I am not going to let anything happen to you and we are going to get down this.” I told myself to pull it together and placed YN between my skis. I made a giant wedge from hell and we slipped down what was supposed to be ‘a road’.

We got down the first pitch.

“I think I need a rest,” said YN. And so we rested for a bit.

Home Again continued, slip, ski, rest, thank my doctor for a great new knee, kiss my gigantor quads. At one point we sang “You are my Sunshine” which was Samantha’s song, which made me cry, so we rested a little more.

It took us an hour to get Home Again. At the end, the road finally mellowed a bit and YN found this tremendous confidence. He was skiing, stopping, singing, and giggling.
We got to a fork in the road and took a rest. “Buddy, I am so stinkin’ proud of you. That was hard and scary, and you did great, bring it in.”

We exchanged a big bear hug. “Yeah, that was hard but kinda fun. I knew I could do it.”

He skied to the house just in time for Hubs, Popsie and his big brother to see his amazing finish. They cheered as he came to a perfect pizza stop. He casually took his skis off and went inside for a turkey sandwich.

I took my skis off and collapsed in a ski bank. Popsie found me later, “You okay, Hehe?”

We did not do Home Again, again, instead we did laps on a wide, very open blue run until the lift closed. When the slope mellowed, YN would tuck and put his arms behind him. “Whatcha doing, buddy?”

“This is how all the fast skiers ski……..Whoooopppppeeeeee.”

There are moments in life you will remember forever. This was a moment; when YN and I made our way down Home Again.

Ahhhhhhh. Happiest of Valentine’s Day dear tribe!

On this day, I want you to know that I love you.

Truly.

In the words of great 80’s icon Howard Jones, ‘What is love anyway? Does anybody love anybody anyway?”

I say yes, HoJo. Yes.

Inspired by this song, I looked up love in the dictionary.

LOVE:

• A strong affection for another arising out of kinship or personal ties
• Attraction based on sexual desire (easy there Webster)
• Affection based on admiration, benevolence, or common interests
• Warm attachment, enthusiasm or devotion
• To Cherish
• To Thrive

My favorite is to thrive……love….love makes us thrive.

I LOVE spending time with you. I LOVE my community….,,you…..you help me to thrive, to grow, to reach beyond who I am.

Love is a connection.

And what are we without that?

Valentine’s Day promises us chocolates, flowers and fancy bling.

I hope you find more……a hand to hold, a friend to call, a sacred moment to yourself…..a hand written note…..connection.

Happy Valentines Day dear tribe. Much love.

I love New Years.

I love Vision Boards.

I sit on the floor surrounded by old magazines, a pair of scissors, puffy paints, glitter, glue stick and stickers and create a vision for your next year.

I know. Super Cheese. I spent three hours today Vision-Boarding my next 365 days. And according to my vision board, 2023 is going to be amazing.

I say the above with about 50% jest. I do honestly take this time to think about what worked and what didn’t work last year. And although I might not change, I ask myself what I want to focus on in this next year? What can help me get there?  I pull out quotes, memories, reflect and dream.

It’s a lovely ritual- a needed break from the Christmas frenzy.

I always finish the holidays slightly askew.

My life is strewn about like remnants of ribbon and wrapping paper, munching on a green sugar cookie in the shape of a sock, wondering where things went wrong after Halloween.

This is my time to reflect and regroup.

2022.

Recover

For me and my tribe.

From a major surgery- to finishing 2022 in my happiest place, knee deep in powder and pain free.

To our community recovering from a fire that tore through our town

For a friend reeling from an unfathomable loss

Recover.

It takes time to recover. It takes reflection, a focus on healing, an eye on hope. A belief that our worst times will not define us.

Recovery takes our loves raising us on high.

And raising our loves in return.

It took three hours, 8 magazines, and a bottle of glitter glue to pronounce, reveal and reflect on this year and bundle it into some sort of package.

Recover.

Sometimes recover is peppered with platitudes; ‘bounce back’, ‘stronger than ever’, ‘overcome’.

But what if recover is coupled with time, relax, regroup, meditate, lean in, search, listen, embrace imperfection.

2022 taught me a lot. I lift my head above the garland, tinsel, leftover sparkle and greet the New Year with an extended hand

To the opportunity to recover and the gift of another year.

I do love Thanksgiving.

I love hosting Thanksgiving, gathering around a meal, the challenge of a massive bird, a holiday that has only one objective…. dinner….so you better get it right.

My Thanksgiving is never perfect, there is always one dish that goes awry and the meal is always late. This year cooking a 21-pound turkey turned out to be an experiment in heat conduction and a quick dissection/ biology class. The kitchen is still covered in a thin film of turkey, and I think I see whipped cream on the ceiling.

No matter. Dinner was served.

Around mid-October I dove into my Pinterest account to see how whimsical, and Thanksgiving-y I can possibly be. The night before Thanksgiving I am wondering what mid-October Heather was thinking.

I did manage to create this little gem

Behold the tree of gratitude!

It’s kind of like the Festivus Pole- although there was no airing of grievances.

But there may have been a Feats of Strength! I’m still not sure who won the ‘Old Guys vs. Kids’ football game.

After the last piece of pie was served and the turkey was tucked away, I had a chance to read through the Tree of Gratitude- I love what my amazing Turkey Day Tribe was grateful for:

• My Cousins
• Friends and Family
• Family, cats and bread: seriously….I cook a 21 pound bird and bread???? Alas, second graders.
• Bread- Again. Bread- next year I’m setting out a pack of Hawaiian rolls and letting you all go at it.
• Bread, not school
• Heather! Aw……I don’t know who I bribed but the check is in the mail.
• True Friends- and my daughter
• Friends, family and health
• Getting together with everyone
• My body’s ability to move
• Being surrounded by love, great food, being in a beautiful home (aw, thanks) and good health

Bread clearly is the winner- but I think my nephews and their cousins hijacked the tree.

During dinner, I stood up to toast, surrounded by family; Hubs, Mom, Dad, Stepmom, Stepdad, Brother, SIL, Besties……

And I had to take a moment and shed a tear.

We are far from perfection or the family you want to emulate….at times people have looked at us with one word…..oof.

But at that table, surrounded by family, love and (of course) bread……the word gratitude is not enough.

Whatever the word may be, may your holiday be filled with it.

Happy Thanksgiving Dear Tribe.

Hey Dear Tribe:

This weekend finds me at a Writer’s Retreat. Here’s a little something that has been brewing:

The Heart, the fearless worker.

The committed soldier with one job.

Keep it going. Work the pump

From the first sign of life to the very last beat.

The heart carries on.

Steadfast, determined, unthinking, unemotional, the heart.

Contrary to our love and lore, the heart does not get lovesick.

The heart does not break after a torrid affair.

It is not heartfelt, whatever emotion you seek cannot be found in the bottom of your heart; your heart does not desire.

But buried deep within its chambers, encased by bone and cages of rib, deep within the chest, the heart carries on.

Keeper of the blood, mover of life, the heart has one job.

When the brain is sad and tired, pockmarked with trauma and emotion, the heart beats.

For the broken sad mind, the heart is relentless, unshaken by tears, unencumbered by emotion.  

A world may be shattered but a heart carries on.

I had a ridiculously fun weekend. I danced way too much for my poor new knee. I sang loud and off-tune. I gave my nephews sloppy kisses. And I found myself back in the beautiful mountains so close to my home. It was a joyous weekend.

Ridiculous Joy is a funny, lovely, unsustainable thing. Sunday night I iced my knee and tucked myself into bed. Monday morning found me trying to fit back into a schedule with the sweet scent of the weekend still in my head.

Ah- Joy.

I try hard to find joy.

And I must confess, I think lately we as a society look a little harder for joy.

I was talking to a friend today as we discussed the quest for joy.

“I had my life in 2019 and then Covid came along. And I hunkered down and waited for my life to return. And now we are back. But some of the things in 2019 that worked, no longer work. I ironically find that I must reinvent myself yet again.”

Reinventing is fine but it must be recognized and attention must be paid. Where do we find our joy? How do we find our joy? The Rowdy? The Quiet?

As I left for the weekend, I checked the stove again and turned off the water. I locked the door and armed the alarm and I realized that I’m a little more anxious about leaving home.

Home.

Home which had become a safe sanctuary the last couple years. Home- where after 50 years, I found joy in the quiet.

And I left it to embrace the rowdy joy of sloppy kisses and dancing crowds.

Tonight it is quiet other than a very persistent cricket. The sun has set and their is a hint of Fall in the air. The sky is peppered with orange and purple clouds.

Perhaps joy is not fleeting- perhaps it does not have to be rowdy or quiet, it can be both.

Perhaps joy can be found where we take time to recognize it.

This is a great song by the Pixies if you have a chance to listen.

It’s been a while since I have posted.

A new knee and six weeks of rehab since I have posted.

And where is my mind?

It’s better….but I have learned quite a lot about myself along the way.

When you recover from surgery, you spend a lot of time with you. You in a compromised state, you in pain, you not being able to swim, you waking up in the middle of the night, you and your crazy head.

I’ve had surgery. But this surgery has been pretty intense. I told this to my surgeon the other day and he did confess, “well I did take a saw to your leg, didn’t you watch the videos?”

No, no Mr. Surgeon. This would not have happened had I watched the videos.

And six weeks out, I am happy to report that I hiked two miles yesterday. I am healing. I will be back.

Two days before Mr. Surgeon took a saw to my leg, a friend asked my how I was doing.

“Not great,” I said. “I’m nervous about Mr. Surgeon taking a saw to my leg to remove my knee. It’s three days before Samantha’s birthday. I can’t be at the Courage Classic. I had to move this whole thing because I got stupid Covid. The last time I was so vulnerable was when I was put on bedrest because of Jack and we all know how that ended.”

Where is my mind?

Oof! I know you all are thinking…… never, ever ask Heather how she is doing two days before surgery.

And in the process, I have once again had to lean back on you…….and I thank you. The meals, the notes, the flowers, the cookies, the texts on Samantha’s birthday and (ironically) the week later when we lost her………the kidnappings so Hubs got a break, pizza dates with Mrs. PacMan, and an 18 year wedding anniversary with a new knee.

I could not do this on my own.

And I thank you.

This weekend I hiked 2 miles with amazing friends. I may have danced to a Grease sing off……

Summer Lovin’ had me a blast…..

No, I really did NOT have me a blast this summer.

But ya’ll got me through….even if you did not know it.

And for that dear tribe, I am grateful.

thank you.

13 years ago my life looked very different- it was the Summer of 2009, Samantha was on day 14 at Children’s Hospital and I was trying, very, very hard to train for the Courage Classic. I would ride from the hospital. I took the elevator from the 8th floor in my helmet, cycling shoes and super-flattering bike shorts, grab my bike from the car and take a cruise around scenic Colfax and 225.

Samantha was sick. Thursday before the ride she was still in the hospital and my chances to ride looked iffy. On Friday evening, we were finally discharged, with the caveat that if anything looked suspect, we would head back down the mountain.

We unpacked that Friday from the hospital and packed again for my ride.

We left Saturday morning at 5:00 to drive to Copper.

I got a migraine an ugly bout of diarrhea on the way up the mountains.

I don’t know why this ride was so important. But it was. Perhaps it was my time to prove I was still alive. I had spent months in the hospital with our girl. I needed to climb a mountain. I needed to find my breath.

I rode the entire tour.

Upon our return, Samantha ended up right back in the hospital.

But I did it.

And I sobbed when we finished.

Since 2009, this team has raised over $1MM for the Mitochondrial Clinic. Yesterday I sat at Panera with our doctors and they stated, quite clearly, “The goals we set ten years ago have become a reality. This money from Summits has made it happen.”

The Summits team will ride on Saturday.

They will ride without me.

This year, I am the patient.

I am a grumpy, self-pitying patient.

It was hard to bow out. It’s hard not to be up in Copper with the people I love.

It’s hard to put my knee ahead of my FOMO.

It’s hard to put my knee ahead of the feeling I get when I climb these mountains, when I find my breath, when I see my girl in the vistas.

This year, I am the patient.

Because this year, I no longer feel strong when I climb. A bike dismount is followed with concern that my knee will support me. A ride is coupled with a struggle to climb the stairs the next day.

Maybe I’m back where I started 13 years ago. Needing to find my breath again, prove my strength, find my moxie.

It takes Courage to know where we are and what we need.

This is what I am telling my grumpy, self-pitying me…..that she is courageous.

I still don’t know if she is buying it.

But next year will be different.

PS- I am still fundraising for our clinic! You can donate here!

Privileged, empowered, white, upper middle class, 50ish female. This is me.

You could call me a Karen…although I hate that term and feel bad for my friends named Karen.

It could have easily been a Heather meme instead.

“OMG she is such a Heather.” Because I kinda am.

But I know who I am.

I stand on the shoulders of proud generations before me. People who have fought for my freedoms. People who enabled me to devour this life before me. I have grown up lippy, opinionated and loved. Perhaps the last variable is the most controversial…..I am vocal because I feel safe and because I feel loved.

It’s easier to be lippy when you are loved.

So I will.

I struggled this 4th.

Because I don’t understand what it means to be an American anymore. This is not a left or right thing…..this is a who are we thing? Are we really a gun toting, forced birth, climate change denying country?

I recently read an article that said, “America is more about a dream than a place.”

I read that to my husband who said, “what a cop-out- of course we are a place. We are a country with a GDP of $20.95 trillion. This is a place.”

So, if we are not dream. And really a place…..I feel a tad more unsure of where I belong.

Because in this last week we (the collective American We) forced a ten year old rape victim to travel to Indiana because no one in Ohio would perform an abortion.

On a ten year old….who was raped.

I should read the story above about a third world country. I should drink my double espresso with foamy oat milk in the shape of a heart and shake my head but not be surprised….because I’m an American….and this happens in other countries but not here.

Oh wait.

And I like Ohio….really Cleveland is lovely. Don’t make me reconsider my Skyline Chili in Cleveland!

On the 4th, we drove to my mom’s to celebrate this great nation. And we heard about another shooting in Highland Park, Il.

Highland Park….an incredibly affluent suburb. Home to Sixteen Candles, Ferris Bueller and Risky Business. Highland Park is my personal Columbine, before Uvalde, before Buffalo, before, before.

And I’m not an extreme progressive. I am not woke….ask my nieces and they will tell me that I clearly do not know my pronouns.

I am not super liberal.

But this is not my America.

On the flip side…..I am……I am…….super lippy and super loved and soon to have a super knee.

And I make mediocre parade signs. And one thing my generations before have taught me, is that this is still my America, even when it feels as scratchy as a wool sweater lined with sandpaper……

As the great George Washington. once said, “Winning was easy, young man. Governing is harder.”

May we Govern better, listen to the voices.

And may this be our non-partisan pic one day…..filmed in Highland Park, IL.