Category: blog

Do You Hear the People Sing?

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It’s Friday evening.

I’m always hesitant to post on Friday. It reveals the fact that I’m not out at a hip bar drinking appletini’s but instead sitting in my study contemplating the meaning of life.

Alas, I am a tad nerdy.

But also tonight mind and body demand a little downtime. A little time to think about how amazing the last week has been and everything we have accomplished.

Last weekend our Summit for Samantha team of 61 riders rode over 130 miles and raised almost $130,000 for mitochondrial research here in Colorado. In our ten years as a tenacious team, we have raised a cumulative $893,000 for our mito clinic.

Next year I’m calling a million. A million dollars for mitochondrial disease.

I would be lying if I said this week doesn’t knock me on my hiney. I have gone radio silent on my team. It took me three days to unload my car. I am now staring at a pile of stinky rider gear in my study.

Stinky.

But my goodness, its awesome. And my goodness, I am so proud of what every, single, person has done to raise this team up into the ten year success it is. We are number 5 in overall fundraising for the ride; number five with teams raising awareness for cancer research, heart defects and overall hospital support. These are known, important causes that are easy to rally behind because the general population knows about them. Here we are, number five for mitochondrial disease. Mito-what-drial?

This is not an easy ride. Vail Pass after 60 miles of riding is brutal; your head plays games and your legs plead for you to stop. I turned on my Pandora about two miles from the top. The station queue’d was Hamilton but a song from Les Miserables was playing…..

Do you hear the people sing?
Singing the songs of angry men?
It is the music of the people
Who will not be slaves again!
When the beating of your heart
Echoes the beating of the drums
There is a life about to start
When tomorrow comes!

I pushed along to the cadence but thinking to myself, I’m not angry.

But then my other self called bullshit on that and declared I clearly had too many shot blocks.

Of course there are times when I’m angry. When we should not have to raise money for mitochondrial disease. When I should not know so many who have lost their Littles.

And when I realized that, climbing up Vail Pass, the beating of my heart echoed the beating of the drums…..

And I started to cry.

Two miles from the top of Vail Pass on your bike is a really awful place to cry. I told myself this but myself does not listen and started to cry harder; snot, sweat and tears.

This year we arranged for a beer stop at the top of Vail Pass because, well, beer. My friend Paula coordinated the stop, rallied volunteers and dressed as a giant banana to keep us going.

No really. A banana.

As I got to the top, I was greeted by my team chanting “Heather! Heather! Heather!” I was handed a cold Summer Shandy, a Kleenex and felt the relief that all I had to do was ride down into Copper.

How can I possibly be angry?

You all make it IMPOSSIBLE for me to be angry.

And not that it does not well up at times. And not that I don’t ugly cry at times. But I’ll tell ya, 61 riders, $130,000, a Summer Shandy and a dancing banana…..ya’ll are good people.

Thank you for another amazing year.

Letter to my team about your money

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Hello Very Best Donors!

This is the time of year when I un-apologetically ask you for donations to my bike ride. I thank you for listening, donating, supporting, cheering. Y’all are awesome.

This is our tenth year riding. I am amazed by what this team has accomplished. They have changed how we diagnose and treat mitochondrial disease in the Rocky Mountain area. I not only ask this group to ride 150 miles up three mountain passes, I ask that they raise over $500. Here is my letter to my team about what they support and the very important work they do.

You can support them here:

Hello Very Best Team!

I hope you stayed dry and managed to find a break in the weather. The clouds made me extraordinarily lazy. I made soup.

A couple of you have asked what is new in the clinic. Since you are fundraising for the clinic, this is an great question and one that I hope I can answer in a couple paragraphs.

Those who have ridden with us know these facts:

  1. We are the only mitochondrial clinic serving the Rocky Mountain area. Our team has been the sole supporter of that clinic
  2. We were part of an international clinical trial. One of 33 sites worldwide. This is a phase three trial that should get FDA approval by the end of the year
  3. Our clinic sees both children and adults in the area
  4. We provide ubiquinol, a supplement not covered by insurance, free of charge to families being seen by Children’s
  5. We recently became part of the Mitochondrial network of care. There are 23 sites nationwide, only 8 west of the Mississippi

This is all because of this team and their fundraising efforts.

But here is what your amazing researchers are doing in the lab. Our team has been focused on diagnosing and finding potential therapies by working with skin cells.

Skin cells? Why skin cells?

Mitochondrial thrive in organs that are tough to get to; the brain, the heart, the liver, muscle. Many times a mito diagnosis had to be from a muscle or liver biopsy which is very evasive especially for our medically fragile population. These cells are finicky, hard to keep alive in a laboratory and are of limited supply. Skin cells however are everywhere! I think I just shed some right now! I know, ew but you get the picture and why we would want to work with a more user-friendly cell.

When a suspected mito patient comes to Children’s, a non-painful skin biopsy is taken and researched in  our lab. Our researchers are now pros at creating an environment where the mitochondria in the skin cells are ‘stressed’; usually by monitoring oxygen intake. From that point, they can look at where in respiratory chain does the breakdown happen, which makes diagnosis faster.

What is even more promising; from that methodology, the team can try potential treatments to see how the mitochondria react. This research is getting international attention. Dr. VanHove found a series of genes that react and respond positively to amino acid therapy. You can access the article here. Please note the reference to our bike team at the end:  https://eurekalert.org/pub_releases/2018-10/uoca-cas100318.php

I know this is a lot to put into a fundraising letter. I might just tell your donors that they are supporting international break through research…..and mean it….100%

I hope this helps! You are all making a difference.

Happy Sunday!

Heather

June 30

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Sigh.

Today just cannot pass without talking about it. I feel it in my energy. I feel it in the way Hubs and I move around each other. We are sad. Today should be different but it’s not.

I hesitate posting about Jack. I never heard him cry, never knew the color of his eyes, but I knew him. And I love him. And he demands his day.

Fourteen years

That’s a lot of life.

And yet the timing of that day passes through me every year……..the minute I sat in the waiting room, the second I found out, the moment I called Hubs.

I hesitate to post about Jack because it is so very sad. Nothing is more devastating than a silent delivery room.

Tomorrow we will toast to our First. I will place the frog ring on the creme’ brulee. The waiter will ask what we are celebrating and we will awkwardly look at each other and come up with a lame answer.

But to tonight I will miss a person who should have been here.

If we were Vampires

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Hubs and I spent the last week in Vermont and upstate New York with dear friends. A friends daughter was getting married and we were lucky enough to attend.

Situated in the Green Mountains lies the estate of Abraham Lincoln’s only child to live into adulthood; Robert Lincoln. The grounds are lovely; the peonies were just about to bloom and miles of green lush forest surrounded us.

The groom turned his back when the bridal procession started.  As his bride approached, winding gracefully through the gardens, he turned and looked at her and started to cry.

And so I cried.

I love love. Love is pretty stinkin’ awesome.

Hubs was lookin’ mighty fine in his tux. I was all spanxed up. We snapped a photo in the peonies.

“We’re looking older,” he said.

Sigh. We are. He took my hand and his fingers traced the back; age spots, veins and fingers that slip so easily into his hand.

We aren’t so old. But we are old enough now to know that this time is fleeting. Views are to be taken in. Hands are to be held. Good friends inhaled. Moments sipped until the glass is dry and the mind is tipsy with happiness.

We went on to visit another dear couple in New York. They have lived a lot of life with us. After dinner we sipped whiskey next to the fire. I had a Great Dane balanced in my lap as I listened to the rain. His tail thumped my leg when I stopped petting his ears.

We talked about the wedding and how love changes as life happens.

And then our friends played us this song.

And I cried again- grateful cry about the irony of life, good sipping whiskey, a groom and his bride, a dog on your lap and a hubs whose hand slips around my fingers.

If we were vampires and death was a joke
We’d go out on the sidewalk and smoke
And laugh at all the lovers and their plans
I wouldn’t feel the need to hold your hand
Maybe time running out is a gift
I’ll work hard ’til the end of my shift
And give you every second I can find
And hope it isn’t me who’s left behind

Does trauma gives you a hall pass? Someone should tell the hall monitor

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I posted something cryptic on Facebook Saturday. It caught a lot of attention from my tribe but it really wasn’t a big deal….

Nothing like seizures, mitochondrial strokes or premature death.

I joke because I can.

Because I have survived these things.

I watched the EEG of my daughter explode. I have held hands in the PICU, I looked at a tiny pink casket, our tribe has buried our Littles before their time. I have gone toe to toe with a PICU doc and won.

I am a badass. I run with Badasses; I am proud of the strong people who have held me up and who I have held.

And yet.

At times.

Silly life shit takes hold of me. Suffocating. Like that stupid snake in the Jungle Book. It starts at my ankles, moves up my knees, my tummy, constricts my heart and looks me straight in the eyes. Sings to me and lulls me into a sense of doubt, confusion and negativity. Trust in me…..just in me….

I hate it.

Because silly shit is not worth suffocating over. I buried two babies and still managed to put my pants on and brush my teeth.

Silly shit is not worth it.

But I think all of us who have suffered trauma deal with this; cars cut us off, people are jerks, friends disappoint us, egos get in the way, Facebook pisses us off. These are not life and death situations. But in my mind, I expect the inconsequential to roll off my back and when it does not, it rattles me more.

I could place a cath in 10 seconds, deliver rectal Valium and I never gave it a thought. Why does this rattle me?

Perhaps this is the evolving trauma process…..what do we do after trauma when real life makes us crazy.

After we put our pants on, brush our teeth, go to work, cross the street….what happens next?

And really, I don’t post this as cause for alarm.

Because cause for alarm is another issue. I sometimes feel us going through all of this are afraid to post our struggles, because we don’t want to cause alarm. We are okay, really. We cry in ours cars, we get sad but we are here, really we want nothing more than to relish in joy and live our lives.

So a question for all of us and real life; what are your tools? What are your tricks for dealing with the silly shit? I invite all ideas J

Happy Spring!

YOPP!

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“We’ve GOT to make noises in greater amounts! So open your mouth lads! For every voice counts!”

Ah, thank you Dr. Seuss.

Rare diseases are tough. And made even more challenging when one constantly has to explain the severity of mitochondrial disease.

Energy…..tired…..

But so tired that its hard to move your jaw up and down when chewing food? Or when you walk up a flight of stairs, you feel like your feet are made of concrete?

I do not know this tired. I have seen this tired. And even more extreme, I have seen how a brain that is tired can turn against itself, creating chaos in the form of seizures.

Energy is everything. Energy keeps us alive.

Last Friday I got to sit in a room with the FDA and talk about this energy disease. I sat with parents of impacted kiddos, adults with onset mitochondrial disease and caregivers.

And for a day we were not rare. We were a voice. A collective, impassioned, tired, loud, committed voice. We sat and listened to stories told by our peers, nodded in agreement because not many know the life of mitochondrial disease; the severity, the fear, the unknown of a complex disease.

For a day we were heard; our voices recorded and hopefully taken somewhere within the walls of the FDA where drugs for other diseases could be approved for mitochondrial function, where drugs for orphan diseases could be fast-tracked through approval and supplements could be covered by insurance.

We had an ear for a day.

“Thus he spoke when he climbed and when he got to the top, the lad cleared his throat and he shouted out YOPP!”

My our YOPPs be heard.

 

I have PTSD- and that’s okay

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I came across this article today and it has resonated with me.

I have PTSD. I have been diagnosed, treated and I am proud of my work to make my life with this a little better.

To assume I could come out the other side unscathed would have been naïve and I have been okay with my vulnerabilities.

But I have not known where to put those vulnerabilities or how to categorize my experiences.

Because when I think of PTSD…….I have not been in combat, I have never faced enemy fire, seen a friend shot or sat in a bunker in the freezing rain for my country. My life has never entailed being exposed to the elements for prolonged periods of time; except for those self-imposed.

I am hesitant to relate my life to that of a solider. But there are parts that I think I might understand. In times of extreme stress, one wakes with a defined sense of purpose. I must defend that line, I must keep this child alive, I must look for the enemy, I must stop this seizure. Communication is short and to the point. Nothing else matters than that sense of purpose.

And when we are called upon for what we are trained to do……

I have seen Moms step into action without a word, seemless to rescue their medically fragile child.

I have issued orders to a medical team and thought…..who the hell is talking?

And I am still hesitant to write this comparison; because I sit here with my limbs, physically unscarred, not knowing the combat life, not knowing what you, combat solider have gone through.

But I do know I have PTSD. Maybe like you, it has settled in my bones, my ears, my brain, the sound of a siren; when watching a movie and they perform CPR; you either turn away or critique their style.

It is there; separating us from the rest of the world.

Combat changed her, some may say

Her child changed her, some may say

Of course it did. Life changes us. Extreme life in front of our eyes alters us.

Trauma is trauma. And like any life story must have a narrative; an audience and validation. I am grateful to those in combat brave enough to tell their stories and request their trauma be acknowledged. I hope it compels others to acknowledge that trauma is real and demands a voice. And most importantly, that we all are heard and not alone.

To Healing.

Shiny New Penny- Week One Check In

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New Years check in week one.

Whew! I developed some tarnish. And after only a week. So much so I had to go back to last week to see what I promised myself. My goodness! Look at me last week, all bright and shiny.

Like anything that takes work, reminders and repolishing are important.

Those who have followed my story know that my beautiful brother has been deeply impacted by mitochondrial disease. Those who know my brother know what a great skier he is and how much he covets his space in the mountains. Brother has three boys; my lovely and active nephews.

Me, having spent my 20’s teaching skiing, I have vowed to teach those nephews how to ski.

In the process, I have discovered that skiing with young children is complex and can be a tad stressful.

On Thursday I met this complex, lovely crew at the park-n-ride. I stuffed my skis and boots in the back of the minivan, jumped in the driver’s seat and we were off.

That’s right. Minivan.

Loveland Valley was a little nutty for a Thursday but all was good because Brother has a a disabled parking placard.

Brother has this because he needs it.

Did I mention that Loveland was nutty for a Thursday?

I pull into the parking lot with the ginormous minivan to find all of the disabled spots taken.

Queue verbal reminder…….I am a shiny new penny, I am a shiny new penny, my words create my reality, my words create my reality. 

I have found that nutty times can lead to compromised decisions for people. Decisions such as ‘I am an able bodied person but I can park in the disabled spot for 5 minutes while I unload gear. No one will notice’

Having used a placard and observed this behavior, I automatically doubt the validity of everyone in those spots. Yes, this is a weakness of mine and something I am working on as a shiny new penny.

So, being slightly stressed in the ginormous minivan and given my history of doubt, I roll down my window and ask a young dad unloading his SUV in a disabled spot if he is parking there for the day.

“Sir? Excuse me. Are you staying in that spot?”

No answer.

“Sir?” Perhaps he didn’t hear me. Perhaps I should talk louder.

“Hi! Are you parking here?” 

Mr. Sir turns to me with the stink eye and a gruff tone. “I have told you three times I’m an staying here.”

Shiny new penny, shiny new penny, shiny new penny!

“Oh. I didn’t hear you.”

“I told you……three times”

And a million snarky responses came to my head, a gazillion arguments. But instead I yelled in an indignant tone, “Well, you just have a nice day!!!!” 

That’s go to hell in shiny new penny speak.

Another car rolled out of a spot and we were able to secure our space. Boys tumbled out of the van, Brother navigated variable terrain and my dad joked about the meaning of have a nice day.

But I was bothered by this interaction.

The boys skied and mastered their perfect pizza wedge. Brother did great but needed to return mid-day to our house-on-wheels to take a nap. Stupid mito.

We finished with a celebratory hot chocolate….and maybe a beer.

As we packed back up, gathered stray gloves and stinky ski socks, I saw Mr. Sir doing the same for his family.

I walked over to him.

“Hi. Listen, I am really sorry. I didn’t mean to insinuate anything or insult you. I was just looking for…….”

He cut me off, “yeah, I’m really sorry too.”

“Things get a little crazy with these spots.”

He laughed. “Yes, yes they do.”

I shook his hand, “Thank you,” I said, “Have a good day.”

And this time I meant it.

Week one under the belt.

 

 

 

 

Well Hello New Year

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I love this day. I really do. New Year’s comes in like a bright shiny penny, full of expectations and hope. Last year drifts off into the sunset leaving me with reflection. What could I have done better? What could have been so much worse?

We are settled into our house on the 20 this year. There are a bazillion projects that need to be completed which will take a bazillion years. But I love this place that Hubs built. And I love him for building this place.

And like our house on the 20, I feel more settled.

And I shudder as I write that- I really do. Years of trauma has taught me to brace for what tragedy might be next. I state the words, “We’re okay, we’re good,” and then make a cringy face and search around as though the next tragedy is lurking in the corner.

Perhaps it is.

Perhaps this is something to work on in 2019.

There were parts of 2018 that were fraught with doubt- more so than other years. Maybe because I didn’t have a move, a sick child, or was silly sick with grief, that left room for doubt to move on in.

Ironic, huh?

I think during those doubtful times, you start to believe lies that you tell yourself; ‘I’m not good enough, I’m not smart enough, I should work harder, why are my pants so tight?’

I am letting go of my lies.

I started my lie purge in September. I am purging old lies from my thought process. This purging will continue through the new year. I am removing the words from my head.

My words create my reality. I want a really awesome, amazing reality; not a pants too tight reality.

I will turn 48 this month. When I was 20, 48 sounded old. Heck, 48 still sounds old.

It sounds old, but it doesn’t feel old.

It feels promising. I see this promise in some of my friends, friends who a venturing out with their own careers, embracing health goals, taking this notion of living a gracious life seriously.

Seriously because this is work. It takes work to dispel your lies. It takes work to not engage in drama. It takes work to live your best life and believe in your awesome, amazing reality.

What is my best life? Heck if I know but I feel like if I talk about it more, it might start to reveal itself. I might even Pinterest a vision board…..take myself on down to Michaels for a glue gun.

So that’s me today. New shiny penny. I hope you feel shiny today too.

Happy New Year.