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.
I love this time of year. The days are cooler, the leaves are beginning to blush, and my calendar notes practices and games. The Phews are playing football.
Who would have guessed I’d become so invested in football? Certainly not me. The crack of helmets, the gasps when the wind gets knocked out, the unstated fact that kiddos get hurt, it still makes me cringe.
Football.
And yet, I love it. Because somewhere between the drills and the whistles, something remarkable happens: a community gathers. No one’s on their phone, no one’s scrolling through social media. Parents and kids line the fields, coaches shout encouragement, and teammates cheer one another on. For a couple of hours, everyone is fully present.
Middle Phew plays flag football. MP is agile, fast, and strong, but still unsure if he’s ready for the contact of tackle. I get it, Middle Phew. For a while, his practices were on Friday nights, and I’d stick around to watch. Flag is lighter, more joyful, a little less pressure. The coaches will run a play against the entire team, tucking the flag into a hat or a shoe. Want to see joy? Watch a forty-year-old man with a flag in his hat giggling as a swarm of twelve-year-olds tries to catch him. It’s impossible not to smile.
After practice, Middle Phew climbs into the car, cheeks flushed, hair damp with effort and slightly stinky. I hand him a sandwich from Snarf’s. Snarf’s hands down, makes the best sub sandwich around and we head to watch one of his brothers play under the lights. The drive is filled with talk of plays, teammates, life, music, school and snacks.
By the time we reach Long Lake Stadium, the lot is packed. The air is cool, the field is buzzing, and the mountains hold the last traces of sunset. I juggle camp chairs, blankets, snacks, and drinks as we weave through the crowd to find the rest of our family.
Then, for a moment, I pause. I take a deep breath. The lights reflect off the helmets, the cheers rise, and I’m surrounded by this small, beautiful chaos we call family life.
In a few years, it will look different. The Phews will be driving themselves. Their friends will take up more of their time. Maybe they won’t need sandwiches or sideline cheering. The hectic will fade.
Maybe I cherish it more because we didn’t always have this. Or maybe I cherish it because I know how quickly it changes.
On Friday, I plopped down on my therapist’s couch. It’s one of my most favorite places and after an eye-opening couple of weeks, I needed a place to process.
My recent, abrupt dismissal from my side writing gig left me a bit sideways. While I was proud of how I held my ground, calling things as I saw them and not rolling over to be ‘nice’, I still had a lot to work out in my head. Much of my self-reflection led to a dreaded question I had to ask: “Is it me?”
Is it me? Dismissed from two jobs in five months. I had to look at myself in the mirror and examine the reflection. I studied intensely, just as I look for chin hairs that are out of place. Sometimes 10x magnification just isn’t enough.
My mind can quantify a lot, but the heart and the ego don’t quantify anything well. The ego bruises, the heart breaks, and like any soft tissue, they take time to mend. And in this world of cancel culture, it is easier to yell, blame, unfriend, shame, and walk away.
I love therapy. We examined the times this has happened to me, a quick cancel. We examined patterns, including what I attract and what is attracted to me. We unpacked. And like any messy bag, unpacking can be cathartic, pulling out the items that have been festering and no longer serve us.
I have been known to come in larger than life. At times, Milley Cirus has been my spirit animal…..I came in like a wrecking ball….
Like any spark attracted to a flame, the initial fire is fabulous; it’s hot, it’s intense, commands attention, and is a tad explosive.
I remember this fire after Samantha. I was a big ol’ bottle of lighter fuel just waiting for a spark. And that spark accomplished many great things over the course of a decade. It was fueled by intensity and the need to do something amazing, and we did. But when my Miracles for Mito partner and I parted ways, it left me wondering what happened to that glorious flame and sorting through the ashes.
It was also the middle of COVID, and I needed something else. In came my writing gig. It wasn’t mine, but I was all on board with a salesperson/publisher determined to make her magazine huge. I was fueled by her fire and the love of seeing my name and my work in print.
And in my last sales job, I came in with intensity, working at a fevered pace, consuming the accolades, determined to make a difference, held together by grand, big ideas.
After my last letting go, I bought Brené Brown’s new book, Strong Ground, and joined a Pilates Studio.
Something has been missing, my core. Those muscles that hold everything together, those that lie deep in our middle and work every day to keep us upright. Those muscles that cannot be built overnight, those that require consistency and repetitive hard work.
‘Intentionality and Consistency over Wild Intensity’
Ugh- so boring! Daily mental and physical lunges and squats, and showing up at work to build a foundation, brick by brick, rather than blowing up a bouncy house.
Bouncy Houses are fabulous. And they tend to blow away in a strong wind.
We ended the hour at therapy. Yes, all of this happened in just an hour. My therapist looked at me, “I know this year has been hard, but this work? What we are doing here can be life-changing. Let’s go do some mental push-ups.”
Push-ups. So terrible, unsexy, consistent, and intentional.
I loved this t-shirt. It was circa 1985, Bruce Springsteen and the E Street Band. We had field seats, and the concert was amazing.
I was 14 and wore this shirt proudly, along with my 14-year-old smirk and dark eyeliner.
Bruce wasn’t my first concert. When I was in 7th grade, my mom got us tickets to the Jackson 5 at McNichols Stadium in Denver.
Tickets were $50! Sooooo expensive in the early 80s! But she bought three tickets for me, my brother, and my Mama. I also got parachute pants because it was the 80s.
I will remember Michael and Bruce for the rest of my life. So, when my SIL asked if I would take oldest Phew (OP) to a concert for his 13th birthday, I didn’t pause. “Of course. Let’s do this. Who are we seeing?”
Central Cee at the Filmore.
Central Cee is an English rapper. I had not heard his songs, but this was not about me. I made a Central Cee Spotify Channel and listened….until I couldn’t.
Concert Day! I picked up OP and his friend, and we drove to Denver. Dinner first. We went to a local diner and as we looked over the menu, I asked the boys if they ever had a Monte Cristo sandwich.
No.
“It’s a deep-fried club sandwich,” I said, “it will change your life.”
Phew’s friend ordered a Monte Cristo and a Mexican Coke, and he admitted. “My life is forever changed,” he said as he dipped a piece of fried club sandwich into the raspberry jam. Is there anything better? I think not.
My work here is done. But not quite.
The Filmore is a historic building that has been around since 1907 and lives on Colfax. It was converted into a concert hall in the 1990s. Colfax is known for many things: art, music, the homeless, and a street where you can buy almost anything you want.
I kept my boys close. OP was wearing a knitted pink cap, in line with Central Cee rapper attire. As we walked down Colfax, a grizzled man on a bicycle passed us and yelled something we all interpreted differently.
I heard, “I like your hat!”
And I turned to OP and said, “Look how hip you are! He just said I like your hat!”
OP rolled his eyes, “He said your mom is hot.”
“OH! Really? He said I was hot?” I turned to OP’s friend and asked, “What did you hear?”
They both rolled their eyes. “He said your mom is hot.”
Well, look at me! Hot Auntie Mama cruising Colfax. That’s right. Your Auntie Mama is hot.
We got into the Fillmore. Central Cee t-shirts were $50! I remembered Young Heather and her Bruce t-shirt. Yes, let’s get a shirt, 100 times yes.
At the venue, I was neither cool nor hot. I was more like a bouncer for two kids who were loving…..loving seeing this artist. At one point, two taller young men got right in front of OP and his friend. I tapped these “kids” on the shoulder and told them to move; we were here first. They looked at me, rolled their eyes, muttered a word about Karens and moved on.
That’s right! Don’t mess with the Hot Auntie Mama at OP’s first concert, I will take you down! I will take you down!
The concert ended. Phew’s friend told his Mom it was the best night of his life.
Well, that’s it, Hot Auntie Mamas work is done….I need a nap.
Yes, this title should be sung with Soul II Soul in mind, and the beat of Back to Life, Back to Reality……Yes, I know this is now firmly stuck in your head for the next 12 hours.
You’re Welcome.
Side note, did you know Caron Wheeler wrote that song after she had a near-death experience? I didn’t know this, but I’m storing it away for a random trivia night.
Gosh, this week was tough, wasn’t it? And in the theme of the song, many of us are searching for what the new reality is. If we listen to the media, the reality is a little jarring.
Wednesday was terrible. It really was. No matter where you side with Charlie Kirk, his death is another tragedy and another crack in the divide of our country. Our Evergreen High School had another shooting. I went to a funeral and said goodbye to Mrs. Adams, a Mama from my childhood and caregiver for Young Heather.
And I got fired from my writing side gig.
I say fired, but when you are freelancing, you are at the mercy of a publisher. In this case, we just didn’t see eye to eye on some things. On Wednesday, after 4 years of producing content, she looked at me and said, “I think we’re done.”
And that was it. We were done. I say this knowing I wrote great stories. When I took this gig, a friend of mine said, “It’s like writing for the local newspaper. Everyone wants to be in the newspaper.”
But after years of telling others’ stories, mine suffered. The other night, I sat at my computer, unsure of what to write if I wasn’t writing for someone else.
Well, that is tragic.
And as a result, this blog of mine has suffered. But more impactful is that I stopped telling my story, the story of my family, my thoughts, my interactions with the world. As I sit down tonight without an agenda, just typing away, I am reminded of my own therapy that is my written word.
So maybe this site will get a little more love. Back to me. Back to Write.
I have not posted since November 2024. My last post featured a rider on a horse being unceremoniously thrown off as I talked about my terrible day.
Looking back at the months later, I would have thought the horse was thinking, ‘HA! Hold my beer.’
I didn’t write in this space for six months because I didn’t know what to write. Sometimes, life has a way of taking up all the space.
After my post in November about the no-good, terrible, awful day, I went in for a routine mammogram. Two weeks later, I was asked to come back for another screening. That additional screening turned into a biopsy, which turned into two additional biopsies and a lumpectomy. Twelve weeks after my no good, terrible, awful day post, I was given the all-clear: stage zero cancer (that’s a thing!); continue with your life; sorry for the disruption.
To be clear, I am grateful that they care enough to disrupt. But as much as I tried to keep a stiff upper lip, it threw me for a bit of a loop.
I continued working during these 12 weeks. Working, trying to find revenue from the account we had lost. I would wake up in the middle of the night and think about where and how to find that next account.
I stopped dreaming. Nights were peppered with anxiety. Days were filled with ways to prove my worth.
On February 26th, I was given a clean bill of health and a nice two-inch scar on my left boobie.
Two months later, I was dismissed from my job.
I stopped writing here because I was so overwhelmed, which is ironic because I have gone through so much worse. I stopped writing here because I didn’t quite know who I was.
As of today, June 8th, I have been unemployed for six weeks. It has taken six weeks, but I am slowly finding my footing—I recognize the person looking back at me in the mirror. I dream again. I sleep through the night. I am carving out hours for me.
I swam outside the other day. The day was gray and overcast. Halfway through my workout, it started raining. Heavy raindrops hit my arms as the rest of me was submerged. Randomly, I started singing…….
I’m swimming in the rain. Just swimming in the rain
The ‘T’ is sharp. It is significant without being confrontational,
The double r’s can be rolled if needed
And the last ‘ble’ leaves room for a long-winded ‘buulllll.’
Say it long…….tttttteerrrrribulllllllllll
Say it again: terrible, terrible, terrible.
It’s nice, isn’t it?
I posted on Tuesday that it was a terrible day.
Some days need to be terrible.
And that’s okay.
And thank you for those who have reached out regarding my cryptic Facebook post.
Tuesday was lined up to be a tough day. My Bro is struggling with his mitochondrial disease, and we were asked to attend a palliative care meeting.
It was election day.
I had a big work meeting.
Sometimes, I feel the need to test myself emotionally. Responsible Heather will look at my schedule, tell me I have taken on a lot and suggest that I move some things around.
Hold my beer Heather will look at the schedule, say ‘Giddy Up’, fill up a 48 oz coffee thermos and roll out without any pants.
Getting these two to agree is a constant battle.
And then there is my Bro.
Lordy. If you ask my state of mind, I will pause, laugh, and say it’s terrible. My heart breaks for my brother.
I hate this disease.
The other day I told my husband, “I hate that we are here again.”
“But we never left,” he said.
It’s true. Bro’s mitochondrial symptoms emerged in 2008….almost 16 years ago when Sammers was still here…..the long and winding road.
We met on Tuesday at the Franklin Medical Center.
I have said this and will continue to say this…..Palliative Care Meetings at the hospital are the worst! The chairs are terrible, the Kleenex feels like cardboard, the bathroom stinks of antiseptic and poo.
Why can’t we meet at a pub and cry over fried pickles, chicken wings, and proper tissue?
No, we met in a sterile conference room on the 4th floor of the Franklin Medical Center. I marveled at my Bro and my SIL, explaining super-hard decisions, situations, and care for each. This disease is taking control of my Brother’s body, and we cannot pretend otherwise.
I held my Brother’s hand and cried.
I left declining lunch. I had a super important business meeting. I tried to pretend I was super important but really got in my car and cried (again).
For the record, crying in the car is the best. I recommend it quite often.
In my super important meeting, it was announced that we had lost a big client, a client of mine I’d held for seven months.
A client that was given to me with confidence and a side note, “This is yours, don’t f*ck it up.”
I lost it. I f*cked it up.
It’s hard when you f*ck things up.
I remember the first time I saw my Bro. He was swaddled on my grandparent’s bed. For all the times everyone promised me a fun baby brother or sister, he looked like a tiny little, squirmy walnut.
I was handed this tiny little person in 1974 with perhaps the same message, “Hello, Big Sister, here is your Baby Bro, don’t F*ck this up.”
I have two caveats: 1) it was 1974 and someone really might have said that while they served us a baloney sandwich and tossed us in the backseat of a station wagon with no seatbelts while singing John Denver. 2) I must pause and acknowledge that my last two posts have involved extensive use of the ‘F’ word….but stay with me
And hence, the terrible, awful Tuesday. I lost an account. I am losing my Brother.
What was crazy is that once I learned about the business account, I started crying. Sobbing. Stupid business that I had no control over, while I walked out of the palliative care meeting perfectly composed.
My friend put it in great perspective, “You can process losing an account, maybe everything about that day could be rolled into what you could process.”
I came home. I cried and held my husband, and then I went to Costco.
Have you ever been to Costco when you are really sad? I bought two puffy coats and twenty pounds of cheese. It was somewhat therapeutic. Come over any time- you will be warm and constipated.
I came home and watched Trump win. And I watched the Republicans take the Executive, Judicial, and Legislative Branch.
And my heart broke a little more
I say this knowing my audience, and many of my loves voted differently than I did.
I say this as a woman who gave birth to a stillborn baby, knowing now if I lived in places other than Colorado, I could have been convicted of murder.
I say this as a sister whose Brother has a rare disease, not knowing how we will support public health and rare disease research to a new cabinet that does not trust vaccines or science.
I say this as an auntie who will storm the field for my Littles.
I will be back. I am back. Yesterday I went to my OB/GYN. After a blood test, I was told I am now in menopause- so bring on the cats and the magic potions.
Tuesday was a terrible, awful day. But I know who I am. I know who I need to be. And in the words of Hold My Beer Heather…..Giddy Up.
I had packed banana bread and a thermos of coffee to be shared with family at my Phews football game. I showed up at the game a little late but not overly late- I was on time (ish) for my standards. I met Phew’s other Grandparents in the parking lot and extended an arm to help Phew’s grandma down the stairs.
I was here, I was present.
And then I got to the field. And I saw someone from the other team throw down a player from Phew’s team and toss him down again.
And then I realized it was Phew.
And. I. Lost. My. Poop.
The Phews were once asked which relative said the ‘F-Word’ the most and it was resoundingly me. They shook their heads at the question like ‘Are you kidding? Of course, it’s He-He.’
I saw Phew go down. I saw this big kid slam into him, and I lost it. I fuck!ng lost it. I let the F-Bombs fly. “Are you fcking kidding me? What the Fck? Open your eyes, Ref! Unnecessary Roughness! That’s bullshit” I may have tossed a couple more expletives in there.
Of course, I said this right on the field, with my Pops, Phews, other Grandad, and many other families standing beside me. I was still holding the banana bread, a thermos of coffee, and an extra jacket (just in case someone got cold). But I wanted nothing more than to storm that field and give this other player the smackdown.
And then Phews Grandad turned to me, “Heather, that was a legal play.”
“Well, that’s some bullshit; that’s what that is.” And then I went to pass out banana bread and coffee. Because I may be many things, but coffee must still be passed.
But I couldn’t shake the feeling. Eight hours later, I can still feel it in my belly. It was a hard game to watch- the other team was taller and bigger, they should have been in a different division, and the refs were terrible. I yelled and used all my f-bombs; I’m surprised I didn’t get kicked out. I wanted to play. I wanted to kick the poop out of this man-child team
“Put me in coach!” I yelled out.
They never put me in.
Yes, because 53-year-old Aunt Hehe would have made a difference.
My Phew played so well. It was a tough game, but he kept his composure, played hard, and blocked this 10-foot-tall man-child that looked like he should be in college.
Phew never lost his cool.
After the game, we were standing in the parking lot. A player from the other team walked by. Phew made a point to walk over, fist-bump him, and say ‘good game.’
Holy snozz balls, I’m so impressed with this kid.
I went home and did laundry. I find sorting socks quite soothing, and I needed a little downtime. I thought about me and my auntie-bear reaction. I thought about my family and my brother and how we all feel a little vulnerable right now. And I thought about this big decision we are making on Tuesday as a country and how all might feel a little ramped up, protective, and willing to storm the field to defend our young.
And I thought about my Phew, crossing the parking lot to fist bump and congratulate the opposing team. He knew exactly who he was at that time and how he wanted to show up.
Tonight, I am taking a page from the book of Phew, and I hope the country does too- no matter what the outcome, we can all cross the parking lot. Even if we do say a lot of F-bombs.
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.
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 🙂
Welcome to Samsmom. I'm Heather and this is my journey as we navigate love, loss, rare disease, hope and resilency. Our family carries a POLG-1 genetic mutation that took my two children, Jack and Samantha and most recently, my brother Ryan. It's not an easy place to be, but here we are- with humor, love and grace, here we are. 