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.

Ya’ll have been on this journey with us for a while and we cannot tell you how grateful we are. In four short days we will climb up Freemont Pass, battle Battle Mountain, stop for a second to take in the view and because it’s me, shed a tear or two.  

As we have continued to support this clinic for almost 15 years, our financial commitment is notable. What has been most impactful is the ability to diagnose mitochondrial myopathies accurately and quickly. Genetic mutations cause mitochondrial disease. Our genes contain the information to make functional molecules called proteins. If a genetic mutation is significant, the production of that protein is lacking or nonexistent. Our cells depend on these proteins to thrive- as these proteins are not being created, cells start to die off and organ systems are compromised. 

What is AMAZING is that in some genetic mutations, we can isolate what protein is not being created and we can supplement. The most notable supplement we provide that can alter the disease progression is CoQ10. Our clinic has several families that are dependent on CoQ10, not just as a supplement they should be taking to help mitochondrial function but CoQ10 is protein that is missing and is vital to stop disease progression. 

How AMAZING that our TEAM provides funds to distribute CoQ10 to these families? This therapy with CoQ10 is just the tip of our research. Next step is looking into supplementing with different amino acids, dependent on the genetic mutation. It’s hard to believe 15 years ago this clinic was almost shut down to now identifying these complex genetic diseases earlier, to providing therapeutic supplements to alter the progression of these horrible diseases. 

Ya’ll are making a difference to so many families. 2023 Courage Classic Bicycle Tour: Summits for Samantha – Children’s Hospital Colorado Foundation (childrenscoloradofoundation.org)

Thank you.

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.