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50 Eve

Tomorrow is my birthday.

I turn 50.

50 years on this earth. 50 years on this beautiful, volatile, amazing earth. One thought that has resonated.

How lucky are we to be alive?

How lucky are we to be alive?

This was me at my 40th birthday party.

This photo was taken 5 months after we lost Samantha. And my 40th birthday.

My god…I thought. I have lost everything. What will I be now.

A friend of mine does a post about this picture, he says “And Heather opened her mouth and swallowed her friends whole.”

The irony…..is that I really wanted to swallow you whole. My poor heart felt so felt sad and empty, perhaps if I swallowed you all, I could be full.

I tried to swallow you all but your heads are really big and my jaw doesn’t do that funky dislodging thing that snakes do.

Perhaps its for the better.

Instead you filled my heart. Reminded me I was loved. Nursed me through my 40’s.

And so here we are.

50 brings a light and love that I see shinning through windows, reflected in the trees, returned in a hug or fist bump.

I promise I will no longer devour you.

Hooray for 50.

You bring me Delight

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Delights Day 11- Post Gluten and a Baby

Welcome Dear Friends to Day 11 of 365 Days of Delights. Yesterday in response to my anger, I wrote fiery blog post, banned myself to the kitchen, made 6 dozen cookies, 32 peanut butter balls, 2 loaves of bread, and one homemade pizza dough which was converted into said pizza.

No really. I did.

Today I delivered cookies, banana bread and peanut butter balls to my brother and my ravenous nephews. I listened to a Berne’ Brown podcast twice and had a very honest dialogue with myself around my own accountability as a human on this earth during this time.

And then I ate another cookie.

This time is hard. Anger is easy.

I have more to say on this topic but my brain is tired from baking all the cookies and honestly, I would rather focus what brings us delight.

Oh. I love a sweet smelling, smiling baby! Therefore, I hand today’s Delight of over to my lovely friend and now Auntie ……Laura.

My delight right now is hearing a notification that there is a new picture that has been shared in my photos account. It’s from California, which is a very long ways away at the moment. The pictures, videos and recordings are of my 5 month old nephew. I’ve yet to meet him (which makes me cranky), but the notification on my phone is a daily delight. And the smiles, giggles, tiny hands and wide eyes are pure and simple delights no matter what else is going on. And knowing that 2021 will be the year that I meet the best thing to happen in 2020.

Oh Baby Boy! Thank you for saving me from myself. I indeed am delighted.

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Day 10- Dough Therapy

Welcome to Delights Day 10- dough therapy. I gotta tell you, I’m in a bit of tizzy tonight so you might not walk away feeling delighted. In fact, I am so worked up I have sequestered myself to the kitchen where I will bake and bake and bake.

Oh stop it……

I live in Colorado but this bake is all about pizza, banana bread and chocolate chip cookies. Have you ever kneaded dough when you’re really mad? It’s kind of the best.

I have to tell you. I’m really mad at some of you. And I implore you to stop it. While you plan your grand scheme to blow $hit up, the rest of us are afraid to post anything other than Kitten photos on Facebook for fear we are going to piss off Uncle Bob. We love Uncle Bob but he is a bit of a loose cannon.

I hated that Trump won in 2016. But instead of participating in a coup at the Capitol, I knitted a pink pussy hat, met my girlfriends in Downtown Denver and chanted “Trump Skis in Jeans!”

The statement above is really, really offensive if you live in Colorado.

Not quite as offensive as a Camp Auschwitz sweatshirt, 6MWE or chanting Hang Pence. Which is why I can still fly freely…..as soon as I choose to…..with a mask and hand sanitizer…..cuz that’s how I roll.

I know if I tell you to knock it off, that it will only piss you off. So I won’t.

I’m just gonna make a lot of cookies. And stay the heck away from you.

Thank you for my rant. I feel a tad Delighted. Cookie?

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Delight Day 9 of 365- This Guy

I would be remiss if I continued these Delights one more day and did not acknowledge this guy.

My Hubs.

We have spent the last ten months together- in some sort of quarantine. I have told him he needs to be a better girlfriend, he has told me I need to stop snoring (HA! I totally dont).

But ironically, ten months has made us stronger.

Socially, we could not be more different; I enter a party as a stage, he is wondering if he really needs to go to the party.

The Ying to my Yang.

But in times that are difficult, we are pretty united. We were united in navigating the loss of two children, deciding to be a childless couple and today, we are united around how we navigate these crazy times.

It is refreshing to walk into his office after the latest breaking news and say “Holy $hit Balls! Did you see that?”

And have Hubs agree.

A good partner is a delight…..most of the times 🙂

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Delight Day 8- Blooming Amaryllis!

Welcome to Delights Day 8 of 365.

Sometimes what delights me is sitting next to the dish towels and tea kettle. All it takes is acknowledgement over a cup of Sunday coffee.

I love this Amaryllis! I bought my little friend at Krogers on December 18th, 2020 for $9.99.

He had one blossom. Three weeks later, I have watched other stalks appear, bloom, wither and make room for other stalks. He now has four glorious blooms and has gotten so tall, I tied the bottom bloom to a wooden skewer so he wouldn’t tip over.

When doing the dishes, I give him a little drink.

When the last flower fads, I have been told to cut the stalk and put him in a sunny window until next fall. A little water in November will bring new Amaryllis blooms and a spot next to the tea kettle.

All that for $9.99 at the grocery store.

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Delight Day 7 of 365- Rejoice the Forest Bathers!

Day One I posted about my trip in the woods and the idea of Forest Bathing…..immersing in everything the forest, the outside has to offer.

Apparently I have a tribe of Forest Bathers which delights me! Here are photos fellow Delighters have sent to me in this Winter Wonderland.

Photo courtesy of Forest Bather Friend Heather Lee
Our Miracles for Mito Nurse out on a skate in Albany. I think I would like to skate here. The ice is 5″ thick!
My friend Megan hiking in the Northeast. Ironically, Megan skates! Come join us in Albany!

Bathe. Bathe my friends in whatever delights you.

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Day 6 of 365 of Delights: Come Swim with Me.

I swim during COVID.

It is my most reckless act.

I only swim outside- partly because of this nasty virus, partly because the only way to swim is outside. The light dances on the water and the air is clean and cold.

5 days a week, I pull on a swim suit, my newly purchased swim coat, fuzzy rubber soled slippers and a wooly hat. I knock on Hubs office door, “Off for a swim.”

He nods, knows better than to protest.

5 days a week, I pad along to my reserved lane, take off my mask, pull on my swim cap and jump in.

I sink to the bottom and stay there just a second. The warm water cradles me. I am home. I am home. I am home

Sometimes I swim before dawn- the water is dark, the sidewalk is icy, steam creates clouds in the sky along the setting moon.

Today I swam in the afternoon with a good friend. The winter sun was setting, Prince was playing through the speakers and the pool manager handed out chocolate. The setting sun colored the winter trees pink.

For one hour, five days a week, I think of nothing but my breath, counting my laps and moving my arms one stoke ahead of another.

Delighted.

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Delights- Day 5: My Tribe

I struggled yesterday and continue to struggle today. I do not understand the magnitude of the anger shown yesterday and I do not understand how people I know can condemn this violence.

And yet- I search for Delight.

You know what is really amazing?

I never, ever have to search far. I posted yesterday that my search for delights was difficult.

Here is how you responded…..I kind of love you all…..quite a lot.

Hope cookies!

Glorious sibling spa day!
we DID it!
These are camels? They still made me happy and look delish. \
Aw George
Beautiful
My dad getting the Moderna COVID vaccine

So many notes of love and resilience! Thank you dear delighted Tribe. We’re gonna be okay. Keep these stories coming! May we reveal in every day joy.

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2021 Delight Project! Day Three and thoughts from Corey.

Day Three is brought to you by my good friend Corey. Corey is not only a friend but she is my editor and writing coach. She brings me delight.

She brings me delight not only because she is lovely and a big fan of the F word but she has patience and grace in working with me as writer. And she suggests amazing books.

Here is Corey, her delights and a reminder to pay attention to your tiny delights.

Thinking of delights that truly bring me joy there are, of course, the capital moments: your birth of a child, your finishing a half marathon, your marriage to a pretty nifty fellow, your declarative JOYs that insist upon notice. But I think there are more than just those scrapbook moments.

What about those everyday delights? There are a bunch if you start to sink into the sensual seconds of every day. Pressing your forehead against your floofy dog’s head; ticking off a particularly odious to-do item—paying the damn insurance bill, for instance; watching a kid (even one you’re not related to) notice something for the first time—babies and bubbles, pre-schoolers and puddles, teenagers and new Fender amps… the best. So much joy to be gathered like morels in the woods, if only we can pay attention. How much joy do I allow to float by each day? So much.

I resolve to gather more rosebuds. Will you?

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2021 Delight Project- Day Two! And thoughts from Elisa

Our day two Delight post comes from my friend Elisa! She is kind enough to share thoughts around two events; the holidays and her birthday (today is her birthday! Hooray to another year!) I am honored to post her words 🙂 And Elisa, loved the memories of your Mom 🙂

On a Birthday: If there is anything that I have learned and actually wanted to learn and have managed to hold onto throughout the craziness craptasticness of the last year, it’s that the little things really to matter the most. That moment when you notice the sun shining through the clouds. Having precious moments with the people you love the most. Even a desperate ache for when you can’t see the people you love the most. We have to find happy closer to “home” – aka our heart and soul (and sometimes mirror) – and while that can be hard and difficult, it makes the little things all the more important and special

On the Holidays: It may only be the fourth day of the year, however something that is bringing me great peace right now is the plethora of holiday and Christmas decorations that are twinkling brightly in my house right now. Thanks to 2020 having zero rules around doing what you want (within reason of course) my decorations quickly made the turn from fall to holiday and Christmas earlier than ever before and I refused to apologize or justify back then. And now, they continue to sparkle and shine brightly.

You see, growing up it was a huge tradition in my mom’s house to make an ordeal (in a good way) about putting the decorations up the day after Thanksgiving and it was unheard of for any of them to be taken down until the 12 Days of Christmas were over on January 5. Perhaps another reason I love the decorations is my birthday lands in the middle of all of this so you better believe they stay up for that wonderful day! I have kept this tradition because it makes me happy and it brings back memories of my mom  – she always went ALL OUT for Christmas – and this year, it just seemed even more important for me. The trees are up with lights on all day, stockings are hung with care, candles are lit, and everything is just…peaceful and happy.

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Day 1- 2021 Delight Project- Outside

In my mind, it is hard to NOT find delight in being outside. Outside is awesome. Outside is slightly out of our control; sometimes too hot, too cold, too windy, snowy, rainy…..outside is an unpredictable beast. And that’s what makes it so awesome.

Not only was I outside today but it was with good friends. The pandemic has left us all in need of connection. I am comfortable with that connection. I YEARN for that connection…..outside.

We did a hike so I got a workout.

Alas, today is the trifecta of delights! My heart rate was elevated, I gazed across a wooded summit and I laughed with great company.

I discovered a new term today; Forest Bathing. The concept stems from Japanese Shinrin-Yoku Forest Therapy. While the soak isn’t literal, it means to immerse yourself in the natural environment. Bathe in the blue sky above you, listen to the wind in the trees, feel the crunch of the snow beneath your feet. Forget the creature comforts of home, lose the phone and be present in your environment.

Speaking of literal soaks, outside demands consciousness. This was me today at the base of a frozen waterfall right before I slipped and slid towards a tree that was frozen in the river.

I had two friends come to help after my slide. Because that’s what you do when you’re outside- you look out for one another and help, even when the party needing assistance did something a tad careless. There was no ‘Like’ or ‘Unlike’ no #dumbwaterfall lady or bitmoji of a palm slapping a forehead….just help.

Thank you friends

Tonight my heart is full, my belly is hungry and I am filled with delight.

There is no wifi in the forest……but perhaps you can find a better connection.

See what I did there? I know. Hysterical.

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The 2021 Delight Project

Happy New Year! I hope you all had a lovely holiday filled with good health and good company.

I struggle with what to write about as we all take another journey around the sun. As a human on this planet during this time, I have been witness to a lot of suffering this year. And as a human on this planet during this time, bearing witness to this suffering makes me sad, living in a divided country makes me sad, seeing the people I love lose loves makes me sad.

But I cannot call this the worst year ever. That is not fair to those who really have had the worst year ever and it is not fair to my worst years. Having lived a series of unfortunate events, I think it’s important to recognize when you are fortunate, move a step over and give grace to those who really need some grace.

And on January 1, 2021 at 12:01, the world did not change. The issues we faced at 11:59 are still around, stinking up the place and making us ask “well it’s a New Year, now what?”

Now What?

We still have a road ahead of us my friends. Our reserves are empty, our capacity for compassion and empathy maybe running low and my mask has taken on a nasty stench. Yes, I know I can hand wash it….but I am amazing at how foul my breath can be.

We still have to dig deep.

I started this pandemic by writing down my gratitudes and dreams. This lasted until the Fall. I am behind on my gratitudes. Yes I am grateful. But during the election and as COVID numbers continued to rise, my gratitudes felt inauthentic.

Today I was listening to This American Life on NPR. They were interviewing Ross Gay; poet, professor and author of a collection of essays called “The Book of Delights”. For one year, Ross wrote daily essays about things that delighted him. He told an amazing story about flying with a baby tomato plant and the joy it brought him. Listening to his baby tomato plant story brought me a little joy.

365 days of delight. One thing. Everyday. That delights you.

I have struggled with the purpose of my blog. I talk a lot about grief, resilency, politics. Lets talk about Delights.

Can I do 365 days of Delights? It’s a lot of writing so I might rely on you, my fellow writers and articulate people. Can we fill this blog with 365 days of tiny events that delight us?

I cant think of a better challenge.

We start tomorrow 🙂

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Candy

I haven’t posted for 6 weeks.

That’s not to say I don’t have anything to say. I ALWAYS have something to say. These six weeks have been a bit introspective….we are still deeply divided, in the darkest days of Winter, the pandemic, and trying desperately trying to find our way.

We take the quarantine very seriously out here on the 20. My whole family is high risk and I love them quite a lot. I would like to smooch on them endlessly once this little virus decides to move on. So we stay at home. And we stay. And we stay.

Despite being a self-diagnosed extrovert, I am skilled (seriously) at keeping myself entertained. I find myself pretty charming and a pretty good companion. Myself and I have taken on numerous unfinished projects; a paint by number canvas from hell, sewing, harassing the Hubs, learning how to play the guitar and baking……so many baked goods.

For the holiday season, I decided to take to attack the very fine art of candy making.

This may seem like a small endeavor but I have a whole new appreciation for Willy’s Wonkiness. Making candy involves taking ingredients that live quite happily in a separate solid state….butter, sugar, milk; melting them into a liquid state so that they live together in melty gooeyness and then…wait for it……continuing to heat them up so that the elements in your kitchen become a molten sugar mixture from hell.

“Combine sugar and butter, keeping stirring for an hour until the mixture reaches a temperature of 280 degrees.” Not 281 degrees. 280

You know water boils at 212 degrees. Candy requires you take that 212 degrees and add another three million and twelve degrees. This combination is so stinkin’ hot that as soon as it hits a cool surface, it solidifies immediately. Hands, fingers, ears? No matter.

The irony is that this gooey, murderous, painful lava, poured out onto a cookie sheet hardens into a tasty toffee or beautiful caramel. I packaged tasty Turtles for friends and family.

“Oh these are good.” They would say.

Good? Do you know the depths of sugar molten hell I descended into? Do you know I no longer have fingerprints? DO YOU KNOW HOW MUCH I LOVE YOU???

Good my hiney.

Christmas is over and the turtles have found new homes. The candy thermometer and recipe book have been put away for another year. My glass stovetop still smells of burnt sugar.

Is this an analogy to 2020? Can I make some comparison to molten sugar and COVID? Nah, its a stretch. But in looking for a correlation, I did find the lyrics to Willy Wonka’s Pure Imagination……Onto 2021! Keep dreaming my friends. Love the turtles.

If you want to view paradise
Simply look around and view it
Anything you want to, do it
Want to change the world?
There’s nothing to it

There is no life I know
To compare with pure imagination
Living there you’ll be free
If you truly wish to be

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Veterans Day from a Child of the 80’s

Thank you to so many for your service.

I know these times are confusing but I think this is one thing we can all agree on;

Thank you to our Vets.

I have today off. I have never had Veterans Day off. Colorado is having a crazy COVID surge so my options for today were limited but I did do my favorite thing….I swam.

The pool manager LOVES 80’s music so today I swam to a Tears for Fears/Queen Combo….that’s right….We are the Champions…. and Everybody wants to Rule the World….fitting.

I was a kid of the 80’s.

I grew up with parents talking about the Cuban Missile Crisis; going to bed and not knowing what the world would be like when they woke up. Nuclear bomb drills where everyone hid under their desk….all in the tiny town of Plano, Illinois.

In the 80’s I sat glued to the TV as the nuclear arms race between the US and the USSR intensified; potential destruction my twelve year old mind could not comprehend.

Nuclear bombs are scary.

The made-for-TV movie The Day After came out in 1983. You wanna scare the crap out of a 12 year old? As if puberty is not terrifying enough, plop them in front of the TV to watch the Love Boat and what the heck….a nuclear holocaust. My preteens were spent thinking that surely we were out to destroy ourselves. I would spend my teen years in an underground bunker eating spam, watching my hair fall out….just me and my family…..a preteen nightmare.

I have always been a bit of an activist. At 12 I sat at the kitchen table with my best friend writing letters to President Regan about how I would really like to see my 13th birthday (I also had a flair for the dramatic).

I remember asking friend’s mom, “Why do the Russians hate us so much?”

“Oh Honey,” she said, “they don’t hate us. They don’t want this to get any worse than we do. “

In 1985, Sting released, I Hope the Russians Love Their Children Too, a somber, chilling song that really came down to this premise….. If destroying you means destroying me….well I love my family more than I hate you. So where do we go from here?

Mister Krushchev said, “We will bury you”
I don’t subscribe to this point of view
It’d be such an ignorant thing to do
If the Russians love their children too

We share the same biology, regardless of ideology
But what might save us, me and you
Is if the Russians love their children too

The Wall came down November 10, 1989. I sat in my grandparents living room and cried.

In 1993, I moved to Germany for a couple years and became friends with many people from the Eastern Block. They didn’t hate me nor did they want to blow me up with a nuclear warhead. They were also really good skiers and fun to drink beer with….so there is that. And they do indeed love their children.

Today Americans fight Americans.

And although we do not point warheads, talks of succession are damaging. They point to a fact that we cannot nor will not meet each other at a commonplace.

Would we speak so highly of each other to our children the way my best friends’ mom spoke of our ‘enemy’ during a Cold War? When nuclear bombs were poised towards each other?

Would we tell our children the other side does not hate us? And that the other side doesn’t want this to get any worse than we do? Would we speak about our country people with different ideology as graciously as my best friends’ mom spoke of people she did not know?

There is no monopoly on common sense
On either side of the political fence
We share the same biology, regardless of ideology
Believe me when I say to you
I hope Republicans love their children too

There is no monopoly on common sense
On either side of the political fence
We share the same biology, regardless of ideology
Believe me when I say to you
I hope the Democrats love their children too

Today is Veterans’ Day.

So many have fought for peace. Not only did they fight, but at the end they met the enemy at a commonplace. It would have been easy for Regan or Gorbachev to tell the other to stick it. I’m glad they didn’t. I really don’t like Spam.

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Last Halloweek Post!

For those who have been following the small business Halloween posts from my writer’s group, here is the last one written by yours truly- a salon for witches.

Happy Halloween!

Hello My Pretty Day Spa:

In today’s small business feature, we are happy to announce the grand opening of “Hello My Pretty Day Spa,” a full service exclusive salon for witches and warlocks.

Waste no time, hop on that broom, Kick off those pointy shoes, relax with a steamy eye of newt brew and your very own feral black cat- assigned to you at time of check in.

Flying monkeys driving you crazy during quarantine? We understand. Hello My Pretty is an exclusive day spa. Leave the flying monkeys outside while you indulge in a spectacular lunch of spider eggs and toads.

Have you indulged in one too many small children during the time of COVID? Our cool sculpting technicians will get you right back into that black dress- ready for a night of terrorizing the villagers.

Has your evil eye lost its radiant evilness? Come in for our exclusive chemical peel of goats eye and frog hairs…..that evil eye will stop Doorthy in her tracks- leaving her no time at all to steal your ruby slippers.

Yes, during this time of COVID, it can feel like a house has landed on top of your sister but don’t you worry my evil coven- we are here for you.

To quote owner and respected wicken, Lori Appleby-Hoke. “It’s not easy being green. But at hello My Pretty Day Spa, we double, double, toil and trouble……over you.”

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Halloweek Day 3- To handout replacement knees!


Shake Your Bones at The Rib Cage
By Tracy Skochil for the Skeleton StarFeeling

Covid-catatonic and wanting to get out and move? A new fitness center down on Main Street may be just what skeletons (over the age of 18) have been waiting for! Owner Heather Schichtel, a long-time resident of Fossil Creek and active community organizer, decided to take the plunge and open during the pandemic.“I mean, the world is unpredictable. What are souls in this town going to do, wait forever for life to get back to normal?” Heather said, turning up the incline on her treadmill.

“Skeletons have got to get out and move. Staying in one place makes our joints stiffen, and no one wants that.”The Rib Cage Gym has everything from group fitness and kickboxing to spin classes and circuit training. The Little Socket Daycare is open from 6am to 8pm. The gym has luxurious showers, saunas to ease those creaky bones, a milk bar, and a calcium-enriched swimming pool. There’s a special introductory offer running for October: sign up the whole family and get free access to the movie theatre for six months. Jog or pedal along to everyone’s favorite, A Nightmare before Christmas, playing twice daily until December 26.

“We can all agree 2020 has been a year most skeletons would like to leave in the dust. So make plans now to join us on New Year’s Eve for our 8-hour cycle-thon to ride into 2021,” said Heather. “Replacement knees will be available to help you go the distance!”Call 1-888-Get-MOVIN for membership pricing.

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Happy Halloweek! Pt 2.

Devils Food Anyone?

A Bloody DelightLocal Restaurant Review:

Sweet Fang BakeryBy Leah Byrd of the Vampyre Times

The moment you walk into Sweet Fang Bakery, you’re greeted by the aroma of fresh blood and sweet pastry.  The owner and pastry chef, JoBeth Jamison, is a genius with red blends and has developed her own line of both natural and synthetic jams and syrups. “They’re secret clan recipes that have been passed down for millennia,” said Jamison with a sly grin.

With a carefully curated menu of both fresh and aged blood types, Sweet Fang Bakery offers a refined assortment of treats worth killing for. The towering croquembouche with caramelized B positive is the obvious showstopper, and few are able to resist the temptation of the red velvet cupcake with the surprise filling, but the cranberry scones with O negative clotted cream are what will keep you coming back again and again.

The Sweet Fang Bakery is a local hot-spot and a bloody delight (pun intended), and the perfect place to bring your out-of-town friends and family. Just be sure to get in line early or you might miss out on the half-priced lattes with steamed plasma. 

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Happy Halloween!

Bibbity bobbity boo!

I have not posted in OVER A MONTH because sometimes when your heart is heavy, it is hard to be insightful and poignant.

So forget ALL of that!

In the spirit of Halloween, my fellow talented writer friends have put together small business review for ghouls and goblins. If you are looking for writers prompts for your Littles these are a lot of fun and funny. Here is day one- Enjoy!

Taking Ogreship: By JoBeth Jamison

Need a fix? This week’s highlighted Ogre-owned business, The Pits, promises to deliver on every Ogre auto repair—gigantic or small, foot or fart powered.

Owner and operator Tracy Skochil, a Triple Onion-certified mechanic, started her career following in her mother’s and father’s stompsteps in MonsCar pit crews and fast became one of the sport’s most valuable assets.“I’ve always just been a sponge for the way things work,” says Skochil. “And for Grawp’s Pumpkin Eyeball Ale—I soak that up by the barrel every fall,” she chuckles.

Skochil ultimately transitioned into the role of world-renowned crew and engine consultant, which inadvertently led to her become THE mechanic to the stars. (Shrek and Fiona now refer to her as their “Motor Queen” since Skochil achieved what they were told was impossible: a full restoration of their iconic 1576 Zweibel Princess Coach after their notoriously wild child Bink drove it into the Royal Tar Pits last year.)

But Skochil’s own notoriety has never been her comfort zone. After a while she began to miss her Forest of Illusion roots. Despite the sparkle of her luxury-cargo-plane-set life, Skochil says, “I’m a swamp girl, through and through. I was never not going to come back here and be part of the community I love.”

She recently bought the dilapidated Humbaba estate in neighboring Cedar Forest and turned one of the out buildings into her retirement plan: The Pits, where she and her parents now work together full time. From Toyogres to Mercedes Bones, Chevrolegs to Caniballacs, Hyundeyes, to Infiniteeth, Bulkwagens, and more, The Pits promises superior service with that one-of-a-kind, superstar-swamp-ogress, Skochil Family flare—without the flashbulbs

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Mitochondrial Awareness Week 2020

Dear Friends, Family and Supporters of our Cause,

If you are receiving this email or reading this blog, website or tweet, its because you are engaged with us and for that we thank you.

Thank you.

This week marks International Mitochondrial Awareness Week. This week also marks ten years of Miracles for Mito as a nonprofit. Happy ten years to us! Today I was driving into Boulder from Denver. There is a point as you approach Boulder that you can see Long’s Peak, the Flatrions, Twin Peaks….it is really an amazing view.

I reflected on our ten years, Miracles for Mito’s mission to establish a presence in Colorado and felt a little teary. We have lived a lot of life in ten years. We have said goodbye to Littles we loved fiercely, we have raised over $1MM to the Mitochondrial Clinic at Childrens Hospital Colorado and we have established ourselves as a Mito presence on the Front Range.

There is still a lot of work to do. But in 2020, a year for the history books, we have raised $84,000 for our Mitochondrial Clinic at Anschutz campus. This significant, consistent funding has presented multiple opportunities for trials in 2021. The clinic is currently in negotiations for these trials.

In a Spring and Summer of lockdowns, Miracles for Mito shipped Ubiquinol and gift cards across the nation. We now have the bandwidth to ship supplements beyond the Front Range. Please let us know if you know a family that needs help, regardless of their location.

Shipping Supplements from Erie, CO!

And our amazing nurse MaryBeth Hollinger, provides coast to coast support for Mito families facing the challenge of a rare disease during a pandemic. The support group meetings she conducts twice a week are a cornerstone of support for so many.

Family grants, gift cards, a registered nurse facilitating support group calls, COQ10 for whomever needs it. Miracles for Mito is there for our families.

Is there more to be done? Always.

Do we need your help more than ever? Absolutely.

But just like climbing one of our 14’ers in Colorado, it is one foot in front of the other, every little step makes a difference; tenacity, perseverance with a touch of exhaustion will get us there.  

Thank you for all you do. Please follow us on Facebook and Instagram this week as we celebrate advocacy and awareness. Thank you for ten years. Let’s dare to dream where the next ten will take us: http://www.miraclesformito.org.

Yours for a Cure,

Heather and Maria

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Would We be as Good as we Were 19 Years Ago?

I was 30. Before I was married. Before my children. Before I knew the words Mitochondrial Disease.

At 30 I could give you a list of all my worries but looking back, I had a pretty charmed life.

I was consulting for KPMG and I was scheduled to start my new gig on September 11th in Liberty Corner, New Jersey. I flew into Newark the night before, cursed dark New Jersey roads…..why is it so woodsy here????? And reported to my new project at 8:50 on September 11th.

I sat in the lobby waiting for my new manager, sipping my Starbucks, and watching CNN. You know how the rest of the day went.

But it was different because it was close. Liberty Corner is a commuter town. People had loved ones in Tower One and Two. I watched the day unravel. I watched loved ones search for each other, unable to get through, worried and frantic.

At noon they told me I should go home and come back tomorrow. But I had no home. I had room 311 in a boutique hotel of quaint and tiny Liberty Corner. And so I sat and watched and cried and fretted.

I couldn’t fly home for ten days and so I embraced a very sad community. I went to church and prayed. I went to the coffee shop. A firemans boot sat on the counter to collect funds for families. I ate scones, drank lattes, cried some more and tossed dollars into the boot.

On Friday, I went into the city to find solace with dear friends. The subway line under the Towers had just opened. It smelled of burnt oil. Smoke still stood in the subway air. Grand Central was a living Memorial of those missing. I’ve experienced a lot of personal loss in my life. The image of poster after poster of missing loved ones is still crystal clear.

I vote Democrat. I always have. But I was so proud of our republican president. He was strong, uniting, compassionate. For as hard as it was to be so far away from family; I have always been honored to bear witness to the healing of that community.

2,977 souls were lost that day. 19 years later, we honor those lives.

Would we be as good today? As we approach almost 200,000 lives from a pandemic we refused to acknowledge for months, would we be as good? Would we blame each other? Would we turn? Would we unite?

I don’t know that we would unite in the way we did 19 years ago. I can give many examples why I think that but many of you know where I stand on current issues. To say my why would only increase the divide. You know. I know.

It took buildings crashing down for us to unite. 2,977 souls and the ripple in the world that their void left. But it also took empathetic, compassionate rhetoric to reinforce that our neighbor was not to blame, blue or red was not to blame…………It was 19 men following a leader who made it his life’s work to destroy what we believe in.

I traveled often after 911, for a while on a weekly basis. As I took off shoes, belts, endured countless, very ‘personal’ pat downs, I would think about what I heard often in the security line, “Well the terrorists already won.”

I never thought that. I always thought that we all were doing the very best we could to make sure we all got to our places, with our loves, as safely as possible.

I hope we can back there someday. That we all do our very best to make sure we get to our places, with our loves, as safely as possible.

It’s all any of us ever want.

Peace and blessings to you on this day.

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Homework

In March the world shut down.

Our trip to Europe was cancelled. Work trips were put on hold. Ski resorts were closed. We hunkered down and I continued to write in my gratitude journal.

“I am grateful.”

I am grateful for a job, a house, stability, my health, my husband…..the list…..I focused on the list.

And this worked for a while. I held my gratitude like a shield against all that was going on in the world.

But it didn’t get any better. In fact, it got worse. Politics got worse, the summer got worse, we got angry, divided, Spring turned into Summer. Summer turned into July.

Stupid July.

July was ugly. My gratitude shield was a puny piece of aluminium…..pew….pew….pew….

I called up my therapist- we hadn’t talked in a year.

“I am so sad. I feel so extended but I’m not. I live with one person, 24/7 and I love him but he’s loud and he farts…..a lot. I should be grateful for all I have but I’m so stinkin sad. I have lost friends. Everything I have held true seems to be false. I struggle. I should be more, I should be better, able to rise above the petty. I cannot.”

I waited for her to tell me I was broken. My pain was exaggerated and she could prescribe something to fix me.

Because we live in a world where we have an instant solution for what causes us pain; a pill, blame, rage….But instead she said to me, “With everything going on, everything. If you aren’t a little depressed about these events, you might not be in touch with what is going on in the world.”

Thank you…..thank you lovely therapist for this acknowledgment; that maybe it is the world that is broken and not me.

I talked to her today. “I am joy starved,” I said. Not just a laugh or a moment but a full on group Powow WAAAAHHOOOOO joy.

“I miss it.”

“What makes you happy?” she asked, “even for a moment?”

“This,” I said, “talking to you, swimming, yoga, moments with friends, reading, slow mornings with Hubs.”

“Your homework,” she smiled, “your homework is to remember these small moments. Take a second or two, remember the air, the smells, how you felt. Remember these moments. Hold them for a precious second and then move on. We can be enveloped in the bad. Hold the good.”

We are all trying.

Trying so hard.

I don’t think things will get easier. I think the next couple months will be very challenging. I invite you all to share what is good. Hold it in just a second longer. We are there….I am rooting for you….I am rooting for me….we are all rooting for us all.

This is not our life. This is just our life right now.

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It is what it is.

I used to be a tad more open minded to other opinions.

I still try to be but I find it harder.

And if you find me difficult and unrelatable, I get it. It’s not you. Really, it’s not you. It’s me.

And perhaps it’s the company I keep. Nothing is worse than a tribe of special needs parents reminding you that health is important, wearing a mask is important….nothing ruins your mojo more than special needs parents who have to run home to oxygen, suctioning, feeding tubes and bottles of purel. Special needs parents are not very sexy.

And bereaved parents?

Get. Out. Of. Town.

Never, ever talk statistics about how many children could die of COVID to a bereaved parent. To a bereaved parent, we beat the odds. Anything can happen. Don’t try to rationalize life and death based on what you saw on Fox News; especially if its not yours.

When was the last time you attended a funeral and sat in front of a baby casket? Never?

Then count yourself lucky and STFP.

Am I angry? Hell yeah.

Stop talking about things you think you know and I hope you never ever know.

But really. It’s not you. It’s me.

Of course I seem scared to you. My stories are your worst nightmare. The outlier to your statistics.

But I am not scared.

I was scared when my daughter seized for the first time. After the 20th time, it was old hat.

Cause it is what is it is.

I was scared when she caught MRSA multiple times and it took two weeks to get a bacterial infection under control. I was scared when I was sent home with two IV antibiotics to be administered two hours around the clock through her PIC line.

I was scared when I performed CPR for the first time. I hope I never have to perform it again.

But hey.

It is what it is.

160,000 dead in five months. But its not your Mother, your Father, your Brother, your Child.

Is it?

So you can ignore it.

It is what it is.

Until it’s yours.

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Happy 30 Years American Disabilities Act

I missed a birthday yesterday. It’s an important one so I will send a cake.

30 years ago the American Disabilities Act was passed. 30 years ago a law was created stating that you could not discriminate against those who had epilepsy, you could not refuse to serve someone in a wheel chair, you could not deny employment to someone because they had a hearing aid.

What is crazy to me is that before 1990 you could.

I was 19 in 1990. Selfishly, I cannot say I remember this historic date. And as a somewhat blue leaning voter…….I say thank you George H.W Bush. Good-on-ya.

This was the Capital Crawl on March 13, 1990. They could not walk, so they climbed up the Capital stairs.

Crawled. Because their legs did not work. And because their legs did not work, they faced discrimination……only 30 years ago.

Crawled. Because there was no other way up.

Four months later, Bush signed the ADA act, a bill written by Tony Coelho, a California Democrat who suffered a head injury at 16 that evolved into Epilepsy. In college, when he wanted to become a priest, he was told he could not because according to Canon Law, people with Epilepsy were possessed by the Devil.

This was in 1960. Apparently 60 years ago you could still be possessed by the devil.

30 years ago, I had no idea the impact this law would make on my life. I will always be grateful for ramps, accessible buildings, wide doors, individualized services vs institutionalization, access to education……my ADA friends are nodding their head and saying ‘yes…..but we have such a long way to go’

As a mama who changed her daughter on the floor of a non ADA accessible bathroom, yes, this is just the tip of the iceberg.

You can have 1,000 ramps but you cannot change attitudes…..or those who still park in handicapped spots 😦 And today, in hearing a Westminster Colorado teacher refer to his special needs students as ‘retarded’, yes we have a long way to go.

And it goes without saying that those in undeserved communities struggle for these ADA rights more than anyone.

But despite the work that needs to be done, despite partisan conflicts over funding and the fight that parents face every year, with every IEP, there was once upon a time when we all came together and did good.

It wasn’t that long ago.

And it should be celebrated…..

Happy Birthday American Disabilities Act. Thank you for paving the way.

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A July for the Books

Last night Hubs and I opened a bottle of wine and toasted to the end of our July.

“Well”, he said, “We’ve had worse Julys.”

This is funny…and sad. I dread July. This one month marks the births and deaths of both kiddos…..all wrapped up in a poopy 31 days. Kinda like Baskin Robbins 31 flavors of ice cream. But awful. And no sprinkles.

I have never hidden the difficulty of this month. Not only for me but in trying to honor my Hubs. Here is how our July usually goes………

Me: “This month is awful and hard and I need to surround myself with as many people who support my cause as possible.”

Hubs: “This month is awful and hard and I need to surround myself with me. And maybe my wife….if she is not surrounded by other people. But she usually is….so just me.”

July is the month we lost both Jack and Samantha. It is also the month that our team of 60 get together and climb 180 miles for a cause embedded in my soul. My grief has always been diluted by my miles, and my sweat, and your hugs, and cowbell.

I missed my diluted version of July.

Full concentrate grief July is a lot to manage.

Grief is a hard thing to anticipate. Something that seemed okay last year can sting the next. And on the flip side, an issue that was so important last July can be forgotten. That’s the crazy thing about grief.

And the statement above? Only applies to you. Everyone else can be having their very own Grief showdown…..and you might not even know it until its high noon and you’re standing in front of the General store.

I do think we all survived….by the hair of our chinny chin chins (which might be longer because of work-from-home policies?) but we did survive. The magnitude of how hard the weekend was just reminds me….be kind, if it doesn’t matter let it go, Love your Loves, and be cognizant of another’s battle. We are all missing our people. Give Grace.

And with that, Adios July 2020, you Mother F#cker.

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Psychomagnatheric Slimeflow

Uh yeah. Your honor, what we’re trying to say is all of the bad feelings. You know hate, anger and the vibes of the city are turning into this *sludge*. I didn’t believe in it either. But, we just went for a swim in it and end up almost killing each other.

Ghostbusters Two was released in 1989 and it did okay according to Rotten Tomatoes.

It was not the original Ghostbusters- the Staypuff Marshmellow Man made no appearance, the tone was a little more somber and there was Vigo.

Vigo the Destroyer, a cruel leader from the 1500’s who comes to life in a painting and tries to possess a baby named Oscar so that he can rule again in the 21st century.

I do have a point to this post….but first, I have to do this…..because it’s my blog and I find it hilarious…..

Vigo the Destroyer
Or Vigo the Destroyer…

Uncanny! Hold please while I chuckle for a second.

I’m sorry. According to polls, I have offended about 30% of you. But it’s my blog and you can walk away. Vigo the destroyer was really not the point of all of this.

Instead I would like to talk about Psychomagnatheric Slimeflow. Stupid movies pop in my head all the time. In this stupid movie, the sewers of NYC are flowing with this negative slime. This slime gives Vigo power and starts to take a community down.

Psychomagnatheric Slimeflow has infiltrated our country.

I talk to my friends, my family and my tribe. We talk about gratitude, being thankful and fortunate….we do this at a social distance with cute masks.

But underneath, for all of us, is an undercurrent. An undercurrent that feeds uncertainty and anger.

“Do I send my kids to school or see my Grandma?”

“Will I find a job?”

“Will I be able to feed my family this month?”

We live with an undercurrent of uncertainty. It makes us quick to respond, quick to anger, quick to draw conculsions.

I had a bad weekend. It was a double-decker Psychomagnatheric Slimeflow Sundae.

A friend asked what I was doing for self-care. I love this question.

Ask this question. Ask it often to your tribe that you can’t always see.

What are you doing to take care of yourself?

Because that is all I can do……that is all you can do. Take care of yourself.

“I am swimming.” I answered unexpectedly. I get in cold, clean, crystal, chlorinated water and I listen to my breath. I do it again when I have the opportunity. That is my antivenom. What is yours?

I have felt the Psychomagnatheric Slimeflow creep into my veins, my house, my tribe. I have been short with others and been on the receiving end.

Do not discredit what this undercurrent can do at the same time, do not discredit your ability to rise above it; recognize it, protect yourself, move on.

And never, ever cross the streams.

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Grief in a time of Grieving

I woke up at 5:00 this morning- wide awake, listening to the Starlings dance on the roof and watched the sun slowly iluminate Longs Peak.

June 30th always wakes me with a jolt, a collective FU(K, a deep sigh and a muddled plan to get through the day.

It’s hard to relive one of your saddest days. Grief freezes time and memories into smells, sounds and snippets as vivid as film. As the day goes on, the edge wears off. I become distracted and the day passes. But the morning of June 30th is my time. My time to remember my Jack. My time to remember how a day started with such promise and how it ended.

15 years of this June 30th- some years are better some years are worst. But today will always be a deep stain on the rest of 365 days. And today, as July-eve begins, so does a collective month of bittersweet anniversaries.

And I am not on my ‘A’ game this year.

This year I am tired.

Four months of unknowns and quarantines, and riots and a bad economy and a pandemic that keeps raging; I am not going into July as my best self. I’m showing up disheveled, a bit anxious and fully aware that the tribe I lean into during this time might be feeling the same way. I have lost my big girl pants and kick ass boots.

And I am tired of rationalizing the last four months knowing that we are still in the thick of it. I am so tired of fighting for my joy. I’m tried of drinking the kumbacha and marveling at how great my coffee tastes in the morning.

And you know what? My homemade masks are really the worst ever. My husband asked me the other day if we could please just buy some.

Fine.

Quitter.

I will be back. I’ll be back in some annoying joyful way…..give me about 10 hours, a glass of wine and access to our Courage Classic pictures.

This morning? Screw it. This morning I will lie in the suck for a bit.

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Reform

I have been hesitant to write about this for years because the memory is so painful.

And I have been watching my friends divide and unravel in the last week.

I have remained silent.

Part of the reason is that I am a privileged white woman. I am. I see this fight. I know this fight is overdue. And I am so afraid of saying the wrong thing. Picking up my phone at the wrong time, exposing myself as a Karen.

Can I just pause for one second and apologize to ALL of my friends named Karen? I am so sorry this all somehow got pegged on your name. Sorry, back to my thoughts.

I have admittedly, been a Karen. I have walked in with my Marriott points and demanded better service, I have switched rooms, tables, asked for the manager. I have at times been an ass. I am working on this.

A friend of mine took her daughter into a Chik-Fil-A a couple weeks ago. My friend is half Hispanic, half English. Her daughter’s father is black. They ordered their fries well done, the manager refused and somewhere along the way, the manager told them they could wait for their fries while they waited for the police.

My friend was ready to sit in the booth and sip her sweet tea while she waited for the police until her daughter started to cry. “No police. Please Mommy.”

They left without their well-done fries.

My friend is fine to wait for the police. Her daughter is growing up to fear them.

I do not care what side you are on. Read the above again. I am not for defunding. I am for reforming. Why does this nine year old fear the police?

I was on the wrong side.

Once.

This is ironic because I really pushed the police several times in my 20’s. They could have hauled my drunk ass to jail and everyone would have said, “Yeah…..well.”

And for that I thank you.

But at time when you and I really needed to connect, we missed it. We missed it to the point I had to go through trauma therapy to be able to write and post about this as I do now. EMDR- three months. I highly recommend it.

On July 25, 2010 my daughter died in my mom’s house. She suffered a massive seizure. When paramedics arrived, there was no heartbeat but they kept working. I jumped in the ambulance as we took off to the hospital.

My husband grabbed his keys to follow behind. The detective on-scene stopped him. He told Hubs he would drive him. There was no option. Get in the car.

My parents tried to get in their cars to follow. They were told they had to stay behind.

This house in Highlands Ranch became a potential crime scene.

My husband drove with the detective. He was told that we would be separated for questioning. We were not under arrest. We were not suspects. We had done nothing wrong but this was protocol.

The hospital called our primary care physician. While she was devastated, she told the ED doc this was not unexpected- that our girl was very sick and had been for a while. The ED docs accepted this. Douglass county coroner was on their way and we all started the lifetime process of grieving our girl.

It was Sunday and the coroner had to be paged at home. According to our jurisdiction, until a body was released, we were under investigation.

Hubs and I were separated and we were not allowed to be alone in the room with Samantha. We could not leave the hospital. We were stuck; waiting for the coroner.

Oh Lord. I was so mad and sad and just let me grieve and be with her. I paced the hall like a caged tiger.

“I know how you feel,” said the young policeman denying me entrance into her room.

I may have thrown an F-bomb. I didn’t care.

How dare you.

How dare you?

“What?! How could you possibly know how I feel? You need to let me in there!”

I had pushed my luck. The room changed. People stood up, faces grew hard.

Hubs touched my arm and pulled me back. I watched people react. I was a suspect. Everything I held true about this world and my place in it had changed.

Things could go wrong very quickly. Medical evidence and doctors clearance be dammed. I was suspect.

I was so sad. I was so angry. But beyond all of those things, I was very scared.

And so I complied. I did not say another word. We said goodbye to our child with that same policeman looking over. We never had another moment alone with our girl.

They confiscated all of the meds in her diaper bag. The detective told me he was taking them. I looked in the bag and saw my Zoloft sitting on top. I joking asked if I could have that back because I might need my anti-depressants.

I told a joke because I was so afraid of doing something wrong.

Three hours later they cleared my mom to leave. Her lovely upper middle class house in Highlands Ranch was searched inch by inch. The poor dog was so traumatized he blew his entire coat for three weeks.

This was protocol. I get that. You were following step by step what was in the training manual.

I do not blame you. Any of you. But maybe we can all sit at a table and say when a traumatic event happens it is not one person against another. There is no right or wrong. Maybe we can ALL do better.

I contacted Douglas County Police. They told me all child death cases are treated the same. I asked about creating a program to first responders recognize a medically complex child.

They told me there was no budget for that reform.

What if we had been black? What if it wasn’t in Highlands Ranch? What if we were in 5 points? What if there were something suspect on either of our records? What if I fit every single profile we all talk about.

What if I fit that profile and I threw an F-bomb in the Emergency Room. Would the outcome be different? Even worse?

This is not you against me. This is us. As a community doing better.

I thank you for what you do. With all of my heart. I know this post might make some of you angry.

I implore you to think how you would have responded had it been your child.

And if you were black.

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Fight for your Joy

I got on my bike last weekend. The wheels were covered in bird poop and the tires were flat.

My bike shorts are a little snug due to embracing the COVID carbs but I pretended I was a burrito and snuggled on in anyway.

For some reason the clips were missing from my bike shoes. Seriously. Where the hell are my bike clips?

So many reasons not to ride.

Tires were pumped with a small prayer that flatness was due to neglect and not a leak. Bird poop is stubborn but scrubs off with a little persistence. Missing clips? eh. I can do it.

My friend Ging and I rode for 30 miles. Not bad for the first ride of the season, even if it’s almost June. Heart rate rose, legs got tired, Longs Peak was on my horizon.

I am so happy. I thought.

Seriously, giddy, giggly happy. As turned home, I told myself, remember this joy.

Last Friday the pools opened up in Boulder for lap swim. I reserved lane 3 at 4:00. I love summer lap swim. The water is so clear, the sun shines on your back, all you hear is your breath. I cannon balled into the pool letting the water surround me; fill my toes, my fingers, my non-showered hair.

Quiet.

Inhale.

Exhale.

My God I am so happy.

It is small. Last year it would have been insignificant. But it these times, when it is so easy to go down a deep, dark rabbit hole, I must fight for one thing.

I must fight for my joy.

I must fight for my joy.

I am a ninja-warrior, joy detective, finding moments, breathing them in and searching for others like them.

I must fight like hell to keep my head above the chatter and to know when it sucks me down. I KNOW when I am better, my head is clear. When my head is clear, my interaction with you is better. And maybe that joy can spread.

Seriously. Find it. Write it down. Inhale it. Fight for it.

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Dear America,

We need to chat.

It seems our relationship has become tangled and a bit complex in the last year or two. And to be perfectly honest, the last couple months have been a little trying.

Here’s the thing. I really, really like you. I have never doubted that a life of incredible opportunities is nestled in the fact that I was born in this country. Call me naive but I had a solid belief that we, as Americans will do the right thing. Other countries face unrest, tyranny, division, riots but not us.

Maybe its me. Maybe I became a tad complacent, snuggled in the folds of the Stars and Stripes, knowing we may not always agree but knowing that we would rally to do what is right. We are founded in a Constitution that changed the world; trusting that the precious branches of our government prevent one branch from over-shadowing the rest of the tree not only for ourselves but for the rest of humanity.

I should have fought for you harder. I should have watered that tree instead of just basking in the protective shade.

But gosh, you’ve been so strong for so long; overcome a depression, world wars, arms race. I just assumed you were okay. My bad. I should have listened. Instead of reading the paper at dinner, I should have stopped, asked you what you needed. I should have told you how amazing you are and how much I love those three beautiful branches as a way to divide control.

Can we come back? I hardly recognize you anymore. You’re quick to react, a little snippy. I’ve noticed your old friends never call you to hang out anymore and quite honestly, I’m not sure I really approve of your new friends.

But I do love you. I am grateful for all you have done. We might not get back to where we were but perhaps it can be better for both of us?

I miss you.

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How My Daughter Prepared Me for a Pandemic

Life changed within a week. For so many, everything was changed, altered or destroyed; plans, expectations, jobs……

March came in like a lion and left like a pack of demon mutant Zombies that multiplied into April, camped out through May and are trying to nestle into June.

It is hard to watch everything crumble before your eyes. It is devastating and demands all the feels.

Hubs and I have nestled in on the 20. It’s just us and the 14,562 rabbits that have decided to call this place home. We have battend down the hatches, are riding out the storm and counting all the ways we are incredibly fortunate.

But this is not our first rodeo- it is not our first life pivot. It’s not the first time we have watched life go straight to hell before our eyes. The last hunkering reduced us to one paycheck, medical bills, a complex medical child and a hoarding of purel (yeah, we started that, sorry).

Ironically this was around 2008, our last big economic down turn. I have no recollection of that recession. Seriously, people compare the Market today to 2008 and I have no context. I was knee-deep in tube feedings and seizures.

But Samantha taught us well. She created our playbook for this time. And the lessons we learned over ten years ago still apply today.

Respect the germs. Oh, we were so respectful. People talk now about being ‘scared’. We didn’t live our life scared but it was the fact that those germy germs were everywhere, and could knock down a medically fragile kiddo in a day. I wasn’t scared. I just enjoyed things like sleep, a night without seizures, not having to deep suction my child because she couldn’t cough the nasty up. We could whip out an alcohol wipe like we were in a gunfight.

Social Distancing. We became masters at the Social Distance. We chose the booth in the way back when eating out. We moved away from people if they got too close. And we cancelled many, many events. The tough part was that no one else was social distancing. I cried many an alligator tear for events that we could not attend, friends we missed, parties we had to turn down. I feared our friends would leave us as we watched a life go by.

Be mindful of your fear; the Primative Brain is a bastard. There were moments in those four years that I was not proud of. Fear, anxiety and grief got the best of me. I screamed at doctors. I stormed out of rooms. I once lobbed a chair at Hubs. I wanted control, I needed control, I couldn’t rage at something I couldn’t put my hands around so I raged at people.

But here is what I also remember; that time was so short. We had four years with our girl and for every week we were in the hospital and I begrudged our life, those four years were fleeting. Four years taught us that our body is fragile, touch is precious, a scent triggers a memory stronger than sight and you only get one precious body.

Four years taught us no matter how sad you are in this moment, this moment will change; you might be happier, you might be even more sad but this moment is fleeting; do not invest too much time where you are at this second. Stop. Breathe. Access.

Four years taught me all the reasons to be better. Fortunately, I have the rest of my life to try and be so.

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Love me a Scientist

Haaaaannnnnngggggg on readers!

Put the children to bed, pour yourself a glass, put your ego aside and hang on.

Mama’s on a rant.

I have tried. Really I have.

I wake up everyday, pull out the black yoga pants that are next up in roatation, pour myself a cup of coffee and sit at my computer.

I inhale. And exhale.

And say to myself “I will focus on what I can change, I will write my gratitudes, I will not engage on facebook, I will not engage on facebook.” And I sip my coffee, gaze out the window and say to myself “I am grateful. I am grateful. I am grateful.”

By 5:00 in the evening my zen has gone to hell in a handbasket. And while I am trying to focus on my joy, I have realized that writing it out gives me joy. So hang on. I’m about to verbally vomit all over you.

And since you are reading, you can grab a coveted Clorox wipe and clean it up.

Apologies.

I need a leader. I crave a leader. I listen to Fauci and Cuomo and think, “Just tell me something beautiful and intelligent, give me some facts, show me your power point. OH. That’s a nice graph. PPE? Yeah, I like PPE.”

I struggle and search because my President (yes, he is my President) well, he leaves me wanting a bit more.

And today he stopped funding the World Health Organization.

I pause.

For just a second. Think about it. He. Stopped. Funding. The. World. Health. Organization.

In the middle of a pandemic.

I will stop for a second and say…..this is not a political issue. Ya’ll know me to be a tad liberal but I get my Republicans. Hubs and I are DINKS with no children living on 20 acres. I get it.

But leave my scientists alone. Seriously.

If you know me you know how I love a scientist. Have you sat done with a researcher and talked about what they do? That brain is so enormous and they are so committed to change the world.

You get one bloody mary in our mito doc and he will go on and on about the importance of amino acid supplementation for our mito patients who have a mutation in any ‘ARS’ gene.

We sat over Samantha’s bed one night before we knew our diagnosis and he talked about the testing he was doing.

“If you figure this disease out, we could name it after you.” I said.

“I never want to be named for a disease,” he said. “I want to be named after a cure.”

These are the people we have decided to no longer fund.

Did I mention we are in the middle of a pandemic?

Have you been to a research lab? When this is over, I will take you to the mito lab at Anschutz. There is nothing fancy. Every corner is occupied. They mention every piece of lab equipment we funded.

The year the lab was about to close, our Mito doc came to me needing $30,000 to continue his research. We were able to fund the lab. That investment has blossomed into life changing research.

$30,000- life changing research.

Do you know that we have mapped the DNA of the Cornona Virus? That mapping will lead to a vaccination. Scientists did that. Lovely, beautiful, intelligent, passionate scientists.

We are not fighting another country yet somehow we have managed to fight each other.

We can continue to point and blame and fight and deny but that does nothing.

Perhaps instead we should support those who are fighting for a cure, our lives and a return back to normal.

I love you my scientists. I love your beautiful brains. Keep fighting the good, intelligent, statistically valid fight.

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In Spite of Ourselves-

Years ago Hubs and I sat at the table after dinner. We shared a bottle of Cab and listened to Pandora.

John Prine and Iris DeMent sang ‘In Spite of Ourselves’; a gritty, no nonsense song about the silliness of loving another and loving that person in spite of our crazy flaws.

In spite of ourselves we’ll end up a-sittin’ on a rainbow
Against all odds, honey we’re the big door-prize
We’re gonna spite our noses right off of our faces
There won’t be nothin’ but big ol’ hearts dancin’ in our eyes

“Honey,” I said. “This is us. This is our song.”

He smiled and nodded.

This is our song.

I mean, don’t take it too literally- me and the Easter Bunny aren’t that alike but really, against all odds, honey we’re the big door prize.

John Prine left us this week. Another great human I never knew but attached my heart to. He was a great story teller, a fantastic musician and another casualty of COVID-19.

I love this song. Hubs and I have truly been against all odds. When I look at times now and where we have come; this marriage, no matter how wonky it is at times, is one of my greatest accomplishments.

He’s my baby, I don’t mean maybe
I’m never gonna let him go

I post this now because it’s easy to love when everything is hunky dory; the kids are at school, the job is great and that Disney cruise to the Bahamas is booked for May.

It can be a tad more challenging when everyone shares a living room table, jobs are on the line, the Disney cruise was cancelled and you have to help your kiddo find ‘X’ in Algebra.

Where is the HELL is X?

If X insists on be illusive, shouldn’t we just leave X alone? Where is X? Maybe X just doesn’t want to be found.

I digress.

These times. These times are a challenge. A challenge for us all. I hope at the end, you look at your person and know that this is your baby, don’t mean maybe.

And thank you John Prine; for your crazy love lyrics. You will be missed.

He’s got more balls than a big brass monkey
A whacked-out weirdo and a love bugged junkie
Sly as a fox crazy as a loon

Payday comes and he’s a-howlin’ at the moon
He’s my baby, I don’t mean maybe
I’m never gonna let him go

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All The Feels

I am a crier. I have always been. I don’t shy from a good ol’ fashion ugly cry- the kind where you look in the mirror after, all puffy and shrunken and think, “Who stole my face?”

It’s a good thing I dont mind a cry. There have been days where I’ve wondered how many tear ducts I have and how much saline can one person produce.

I cry a lot.

Today was no exception. Last night I read that Charlotte Figi died from complications due to COVID-19. Charlotte was the ‘Charlotte’ behind Charlotte’s Web; a form of medical marijuana formulated to control epilepsy and intractable seizures. Charlotte had a devastating disease call Dravet’s Syndrome. She went from having 300 grand mal seizures a week to 3 a month while taking Charlotte’s Web.

Intractable seizures are hell. The brain has waged a war against itself and the entire nervous system. As Charlotte’s mother said, “You hold her and feel her seizing and wonder if this will be the last movement you feel from your child.”

The Figi family changed outcomes for so many families. They enabled us to ask our epileptologists the hard questions, “Why not CBD oil?” “Why not try this?”

They pushed the medical community and in turn enabled us desperate parents to push too.

Dr. Sanjay Gupta has written a beautiful tribute to this family: https://www.cnn.com/2020/04/08/health/sanjay-gupta-weed-charlotte-figi-tribute/index.html

We love these pioneers. Rather it’s fair of not, the special needs community attaches to these families; we watch and learn. They give us hope that someday we too can be pioneers; find that secret cure or a therapy.

I read the news last night and cried; cried for a family that fought so hard. And of course because it’s me, I posted my sad on Facebook.

“Are you okay?” A friend texted me.

“Oh. What? No, I’m fine.”

“Hmmmmm.”

Well okay, I’m not fine.

I am struggling as I think many of us are right now. But as I stated in my last post, there is an undercurrent of grief in my life that I am familiar and comfortable with. I can talk about it because it really is a part of me.

We should be sad, shouldn’t we? 88,000 people have died since December- almost 15,000 in the US alone.

It is during these times I inhale

and breathe out a collective fffffuuuuuuucccccckkkkkkk.

I just did it. Try it. It feels awesome.

I’m going to do it again, even though this is a family blog

…..fffffffffffuuuuuuuuuuccccccccckkkkkkkkk

We are not broken if we are sad. Sadness does not mean we are depressed. Sadness does not mean we will never be happy again. Sadness holds no blame. Sadness just lets you feel the feels.

We have been raised to silo our emotions. People ask how we are and we reply with one word answers; good, fine, sad, mad, happy………But we are not one word humans. We are so much more than fine.

We can be sad but still be grateful for what we have. We can be mad but still love. Emotions are not either or. We are not an x/y equation that must be solved.

Our society doesn’t help with our emotional fluidness. Media is filled with either stories of great sorrow or great triumph; peppered with all of the reasons why we should try to do what we can to be happy and find joy. We have become emotionally schizophrenic- lead by what triggers a response, not by what we really feel.

You ready? Inhale deep and do it again…..fffffffffuuuuuuuuuccccccckkkkkkk.

Am I okay? I can only be the best barometer of who and how I am today and what feels right for me. How many tears? How many kleenex? Oh yeah, it was an okay day.

And sometimes, its okay not to be okay.

Love and light to the Figi Family. We hold your sadness too.

And love to my friend. Thank you friend.

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Grief in the Time of Corona

Us Grievers are a funny lot.

We look normal.

We act normal…..most of the time????

And many of us function fairly well in everyday society.

But tiny variables throw us off a bit.

And slightly bigger issues, say a worldwide pandemic, trigger emotions that search for a place to live. Emotions buzz the face, fester, invite other friends…..and left unattended create a pool of emotional ugliness that demand to be attended.

I had to sit in my ugly on Tuesday. It was more of a plop. It was bit of hard landing which told me perhaps I had been avoiding it for a while.

I was on our mito support group call. We were talking about COVID19 and the anxiety these days produce for our medically complex community.

I should have no anxiety. Hubs and I are social distancing. We are healthy. We have our jobs.

We are fine.

We are fine.

We are fine.

But the underlying current of our fine-ness feels surface level. Underneath my skin, is a layer of trauma from times when we were not fine. A time when we lived every second with a medically complex child; this layer tends to bubble up when the earth is off its axis.

What is difficult is that my trauma has no tangible place. Our children are no longer with us. Hubs and I are healthy. I worry for my other Loves but the amount of worry for my other Loves seems sometimes seem insurmountable.

On Tuesday, as I sat in my ugly plop, it hit me. It hit me on a support call with mito patients.

“I don’t want you to die,” I blurted to the group.

Queue silence.

And more silence.

And so I went on, “I feel like such an ass. I am healthy. I am fine. Hubs is fine. Our jobs our fine. I have nothing, nothing, nothing to complain about.

“But in losing my Littles, I lost so much. And nothing else seems sacred. If I can lose them, I can lose anyone.”

I paused.

And then went on.

“I’m like Tom Hanks in the Green Mile.”

“Who?” asked a friend.

“The Green Mile. Tom Hanks had to live forever watching his loves die because he let an innocent man be executed. Well, except the mouse. The mouse was still alive. Maybe I’m the mouse.”

“You’re a mouse?”

“What? A mouse? No. I’m not. I’m okay. I just don’t want any of you to die. Really. Please don’t die.”

My support group promised to try to not die.

And so I sat a bit long in my ugly. I recognized the smell….survivors guilt with a touch of paranoia. I held it up to my nose before remembering I should not touch my face.

“Heather?” Said someone on the call.

“Yes?”

“I’m sorry. I am really, really sorry.”

“Yeah. But no, really.” I said. “Oh no. Don’t be sorry. I’m okay. I’m just happy to put a name, a face, a smell,  to the uncomfortable I have been feeling. Oh, whew. I smell.”

And with that, I heaved myself from the ick and excused myself to go to another meeting.

Be kind to you, sometimes you don’t know the battles you are fighting.

And don’t die.

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A Disruptive Variable and the FDA

Being in the rare disease space, I have been privy to several clinical trials. Clinical trials are extensive, they can be difficult in the rare disease space and many times, companies who have developed a drug for a rare condition do not get that coveted FDA approval.

This lack of approval is devestating. The financial impact to a pharma company that has dedicated time, resources and money can force a company to close it’s doors. And to families who invested time and money (many trials do not offer stipends), the biological investment of their bodies (to put THIS lightly) and the emotional investment of hope, make a failed trial hard to digest.

Clinical trials are complex. A pharmaceutical company has to gather a statistically valid group of patients with same disease, they partner closely with a medical center that can manage a clinical trial and report findings back to the FDA.

A couple of years ago, our doctors at Children’s Colorado were granted a clinical trial of a drug in Phase Three called Elamepretide. This drug showed efficacy in helping those with mitochondrial myopathies. With mitochondrial disease, the membrane of the mitochondria become ragged, making the transmission of energy even more difficult. Elamepretide smoothed out the membrane.

Brilliant! Let’s do it!

And because it addressed the foundation of the mitochondria, not the complex genetics behind it, this drug could potentially be used for multiple genetic mutations impacting the mitochondria.

WHERE DO I SIGN????

I was so stinkin’ excited for this clinical trial! Which is funny because I would only be a bystander and not a participant…..no matter…..bring me your wonky mitochondria!

And so we started to recruit for patients. This too was a challenge because is it hard to diagnose the gene that contributes to mitochondrial disease. Participants had to have a confirmed genetic mitochondrial mutation be a part of the trial.

My dear Bro was accepted into the trial. When you are a part of a clinical trial, you become one of two control groups; those who get the med and those who get the placebo. This trial was double-blind in that no one knew, not even our doctors, what version patients were getting.

I would ask him about the trial in a trying not to pry, really wanting to pry type of manner. Those who know me know how relentless I can be.

Please send notes of respect and admiration to my Bro.

For six months Bro injected himself with the (maybe) or maybe not med. He reported how his day went and attended monthly appointments.

Monthly appointments included various tests; fasting, walk tests, strength, it really is a lot to ask of patients.

I was allowed to go to the last appointment of his six month trial. On this last day, he would get the real med, no matter if he was on the placebo before. He could receive the med until we got FDA approval.

I say ‘allowed’ because sometimes I can be a tad overzealous. And I was really excited about this. We had raised so much money for our mito clinic and now they were a part of this trial and my brother could benefit………I was not just a bull in a china shop. I was like a bull who had spent four days at a rave in a China Shop.

LETS DO THIS!!!!!

Here is what I realized very quickly….people who manage clinical trial sites can smell people like me out…..immediately. And they are awesome at shutting us down.

Boom. Within five minutes she had me hog-tied and gagged in the corner. While she politely asked questions to my brother.

How was he feeling? Energy levels? Good week? Bad week? They took blood, tested his leg strength and then prepared to send him downstairs for a six minute walk test.

The walk test is a standard FDA assessment. It’s also a toughie when you have a neuro-muscular disease and walking is a challenge (this is a whole different post! Stay tuned for part three!).

“Can I go down with him?” I meekly asked from the corner.

The clinician sized me up, “Yes, my assistant will take you both downstairs for the test.”

And off we went to the bowels of Children’s Hospital. It was a long, silent hallway. The lovely clinical assistant took a tape measure and marked a certain distance. And then it was time. It was time for the walk test.

My God it was quiet. So quiet. Bro walked along. I could not just stand here all quiet and meek in the corner. I started to cheer him on.

“WHOOP! WHOOP! You got this!”

And then I decided he needed some music.

Queue the Rocky theme song which I just happened to have downloaded on my phone.

And how can you play the Rocky theme song and not SING to it????

Gettin’ strong now!

Coming on Now!

Gonna Fly Now!

FLYING HIGH NOW!!!!

Every once in a while someone would poke their head from around the corner. No matter. It was me and Bro. And a clinical trial.

And an assistant that looked really uncomfortable. Like she might throw up uncomfortable.

No matter. We owned this trial! We owned this walk test!!!!

Yeah, we really didn’t.

Here is what I realized later about collecting data during a trial. Variables need to be the same all along the trial so that data has consistency. Apparently the Rocky Theme song is not a consistent variable.

I knew none of this.

We got back up to the room to a Clinical Trial Manager who was fit to be tied.

“You cannot sing the Rocky Theme song during the walk test!’ She scolded.

“I didn’t know!” I contested. “And no one said anything! Your assistant didn’t say a word. I would have stopped singing!” In truth probably not, I mean really; I didn’t start the fire. It’s been always burning since the world’s been turning.

“I am just as unhappy with her as I am with you.”

Turns out, all was forgiven (somewhat). I took my brave Rocky-walking Bro out for sushi and a beer. And the Pharma company allowed the final report to be submitted under the caveat that data was skewed due to a disruptive variable.

A disruptive variable! How perfect.

The other day I listened to our President announce FDA approval for Chloroqunie. I watched as Dr. Fauci put his hand to his forehead.

Alas, another disruptive variable.

And onto Part Three!

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My Disruptive Relationship with the FDA Part 1

The last 18 months, I have had the amazing opportunity to see how the FDA operates in regards to drug development.

It really is amazing to witness the process. The mission of the FDA is as follows: The Food and Drug Administration is responsible for protecting the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of our nation’s food supply, cosmetics, and products that emit radiation.

Regulating all of these elements is a tall order; managing a country that seems to want to super-size, smoke or self medicate itself out difficult situations. We have grown up thinking that there has to be a pill I can take- there has to be a cure- because there is always a cure.

To be fair; my first run-in with the FDA was 14 years ago was when Samantha was in the hospital with a form of seizures called Hypsarrythmia. Here poor little brain was seizing 90% of the day these seizures had to be stopped. We were given two options: a steroid; which would be really hard on her compromised system or a medication called Vigabatrin.

“Well let’s go with the vegamite drug.” I told our doctor.

“Vigabatrin.” She said.

“Yeah, that.”

“Well, funny thing about that drug,” she said. “It’s no longer FDA approved.”

I sat back in chair, prepared for the very worst, “Oh God,” I said. “What does it do?” I thought of all the movies about a drug gone bad that in hindsight I never should have seen.

“There are some cases where use of the drug limits peripheral vision.”

“What? Peripheral vision? So maybe she can’t catch a ball?”

“Or drive when she gets older,” Our doc said.

“Well, she is my daughter so her hand-eye coordination is suspect to begin with. As for driving, I will drive her to the moon and back. We just need to give her brain a rest.”

Our doctor agreed and for a year we smuggled contraband seizure medication from Canada. We paid out of pocket and were happy to do so. This form of epilepsy disappeared from her EEG in 8 weeks.

And so began my relationship with the FDA. At that time I was perplexed by how they deemed this drug safe or not. In my mind, the outcome of the disease was much more harmful than the side effects of the drug. In their mind, they had too many data points that said no.

As a side note, Vigabatrin is now again FDA approved and used often and effectively for this form of epilepsy. And I got to live life as a smuggler running the goods from Canada.

Win-Win, right?

But the disruption does not stop here. The FDA and their meticulous data capture and me with a knack for chaos will collide again.

Onto part two.

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If You Cannot Be Anything Else. Be Honest

Dear Readers:

I would be lying if I did not say that the last couple weeks has triggered some pretty deep PTSD for me.

And so maybe some posts might be hard to read. But if you know me, you know that I put more to paper sometimes than I put to voice. I will tell you I’m fine but pour my heart out in a blog.

This is my safe space.

And so I will tell you.

I am so sad.

I am so fucking sad.

I am sad about the blame. I am sad about the denial. I am sad that the leaders in our great nation, a country that I love, have to gaslight and bolster and pontificate.

We would prefer honesty.

Honestly.

Because we know.

We know that our ICU beds can only accommodate 2 per 1,000 people. We know how many ventilators are available. We know how many people can get a COVID-19 test.

Don’t pee on my head and tell me it’s raining.

Not when it comes to my health. Not when it comes to my safety or the safety of my loves.

It is easy to dismiss medical mishaps as some else’s issue. But when we do, we forget who we leave behind.

When our son was born still at 41 weeks, we were discharged the next day with a pamphlet on grief. It was a lovely trifold in glossy paper but somehow…….

ironically……..

That tri-fold brochure on grief did not ease my pain.

One doctor called a week later. Not my primary doctor. But a doctor I remember and will admire for the rest of my life.

He asked how I was doing.

I said this was really hard. Harder than I ever thought was possible.

And he apologized.

He said in a litigious world, no one ever wants to say they are sorry. But that he really was. And he thought about Hubs and I often.

Ah. To take responsibility. It might not have been his. But as a doctor, in his practice, he took it.

Imagine. As a leader

I think about that honest conversation when I have to make really hard conversations. It compels me to pick up the phone.

I wish we could stop denying what was happening and what has happened in the last month. I wish we had a leader who would let us talk about our fears without attack. Because even if you side with our President or not, you still might be nervous, or disappointed. It would be nice it we could meet six feet across from each other and talk about this.

Because lives are at stake.

And lives cannot be returned once they are gone.

And if we cannot bank that as currency, I’m not sure where we go from here.

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Confessions of a Super Mom

I’ve been thinking of you Mamas and how crazy life is right now.

I wrote this 12 years ago about my own Mama-time. The biggest judge is you. Hang in there

“You are such a great mother.”

This statement takes me aback. I guess I should be flattered. Friends and family say it and I smile, thank them and try to change the subject. When I hear it from strangers however, it makes me a little uncomfortable. Who are you? How long have you been watching us? Did I scratch my butt? Pick my nose? Make a disparaging remark to my husband? I am not used to the attention that comes with a special needs child and when I hear the great mother comment I am tempted to come back with something smart-assed. Really? ‘Cuz I just shotgunned a beer in the bathroom.

My favorite is “You are such a good mother for taking care of her.”

I have a choice?

She is my daughter. I love her to the moon and back.

But I didn’t sign up for tube feedings, seizures, therapy and the many issues that come with being Samantha’s mom. And I would give my right arm, left leg, heart and soul to make her better and to make our life different.

Am I still a great mother?

Oh……I have days when the T.V. is on, when Samantha is wiggling around on the floor, perhaps a little too long before being repositioned. I have nights when she is awake after having a seizure and I am wandering around the house raking my sleep-starved brain for a strategy to soothe her.

I curse God, rage at the heavens and console myself with yet another glass of wine.

I do not feel like a great mother on those nights.

“I will pray for you.”

I really do appreciate this one. Any healing thoughts sent off into the universe is a good thing. However, after a tough night when I have told the world what I think of their crappy divine plan for me, when I have flipped off the heavens with both fingers, I am really tempted to say. “Well thank you but you might want to wait a day or two; God and I are in the midst of a heavy duty argument. You might not get through.”

I did not write this as my pity party. Well, okay, maybe I did. Bring some Ritz crackers, and that really funky orange cheese in the squeeze can. We can talk about your pain, my pain, examine the ingredients of that funky orange cheese and perhaps the ingredients of our lives. As parents, as humans, as people in this world, we all have pain. Just because my pain, my daughter’s disability, is visible to the world doesn’t make anyone else’s pain any less real.

It certainly doesn’t make me a better mother.

That which does not kill you, will make you stronger.”

I have evaluated the super-beings with super-human strength and they all have issues. The Incredible Hulk, major anger issues. King Kong, a great big monkey with an attachment disorder. Even Superman lived a life hiding his true identity; misunderstood and yearning to belong.

Yearning to belong.

Well heck, pass the Ritz crackers.

Whatever our pain may be; a disabled child, an ailing parent, cancer, divorce, foreclosure, it’s not the life we signed up for. When I imagined my married, parental life years ago it did not include anything messy or ugly. It did not include tough decisions. It did not include a daughter with a fatal genetic disease.

It did not require me to be such a grown up.

Am I still a great mother?

“Life is not fair.”

My Granny, Emma Mae, used to say this to me when I didn’t get my way. I used to think that life was not fair because my brother cheated at monopoly or he got the bigger slice of pizza. My reaction would be to stomp my feet, throw a couple pillows around, pout in the corner.

It still is but no one thinks it’s cute anymore.

Emma Mae never told me that the UN-fairness in life is doled out in disease, sickness and death. No one told me that ecstasy and despair are secret bedfellows and that they walk hand in hand. As an adult, moments of shear joy are coupled with moments of pain so intense it’s like someone ripped your heart out of your chest.

And I used to think fairness was all about the last slice of pizza.

I do confess….there are days where I am the Supermom. Days when Samantha feels good, the feeding pump never clogs and we don’t see a seizure. I savor those days; inhale them like lavender and the sweet smell of my daughters head. I puff out my chest. Give my best profile shot and stare knowingly into the horizon; my cape flowing in the wind.

But I do keep an eye on my back. The heavens are smiling down and yet have a complete record of the last time I flipped them the double bird.

And I do confess…..my pink Wellies and bottle of Merlot are by the door. You never know when life’s muddy slog will get the best of you.

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The Genetics of a Virus

I am cheating on my blog post today. I know, only one day into my promise and cheating already……gives you insight into what type of student I was, or am 🙂 No judging, this is a judge free zone.

I love smart sci-ency folks. If it weren’t for social distancing, I would snuggle on up to them, press their big brains against mine in hope that some of that sci-enciness would transfer. Alas, it has not happened yet but I keep hoping.

This was a facebook post from one smart friend to another smart friend who found an article here from the good people in Wisconsin: https://wsau.com/blogs/tom-kings-blog/54/its-not-just-the-flu/?fbclid=IwAR1tPcmB675Tbn0SPTekwWv0bm_V_vXQ5mptOBE-UeV7cUv8imFo04iS8s8

Ah Wisconsin. Land of beer, cheese and good people. I now have a craving for fried cheese curds and nothing can be done about it. Stupid pandemic.

Here is a summary of the article. I find it fascinating and terrifying and a reason why I am taking this seriously:

Feeling confused as to why Coronavirus is a bigger deal than Seasonal flu? Here it is in a nutshell. I hope this helps. Feel free to share this to others who don’t understand…

It has to do with RNA sequencing…. I.e. genetics.

Seasonal flu is an “all human virus”. The DNA/RNA chains that make up the virus are recognized by the human immune system. This means that your body has some immunity to it before it comes around each year… you get immunity two ways…through exposure to a virus, or by getting a flu shot.

Novel viruses, come from animals…. the WHO [World Health Organization] tracks novel viruses in animals, (sometimes for years watching for mutations). Usually these viruses only transfer from animal to animal (pigs in the case of H1N1) (birds in the case of the Spanish flu). But once one of these animal viruses mutates, and starts to transfer from animals to humans… then it’s a problem, Why? Because we have no natural or acquired immunity.. the RNA sequencing of the genes inside the virus isn’t human, and the human immune system doesn’t recognize it so, we can’t fight it off.

Now…. sometimes, the mutation only allows transfer from animal to human, for years it’s only transmission is from an infected animal to a human, before it finally mutates so that it can now transfer human to human… once that happens..we have a new contagion phase. And depending on the fashion of this new mutation, that’s what decides how contagious, or how deadly it’s gonna be..

H1N1 was deadly….but it did not mutate in a way that was as deadly as the Spanish flu. It’s RNA was slower to mutate and it attacked its host differently, too.

Fast forward.

Now, here comes this Coronavirus… it existed in animals only, for nobody knows how long…but one day, at an animal market, in Wuhan China, in December 2019, it mutated and made the jump from animal to people. At first, only animals could give it to a person… But here is the scary part…. in just TWO WEEKS it mutated again and gained the ability to jump from human to human. Scientists call this quick ability, “slippery”

This Coronavirus, not being in any form a “human” virus (whereas we would all have some natural or acquired immunity). Took off like a rocket. And this was because, Humans have no known immunity…doctors have no known medicines for it.

And it just so happens that this particular mutated animal virus, changed itself in such a way the way that it causes great damage to human lungs..

That’s why Coronavirus is different from seasonal flu, or H1N1 or any other type of influenza…. this one is slippery AF. And it’s a lung eater…And, it’s already mutated AGAIN, so that we now have two strains to deal with, strain S, and strain L….which makes it twice as hard to develop a vaccine.

We really have no tools in our shed, with this. History has shown that fast and immediate closings of public places has helped in the past pandemics. Philadelphia and Baltimore were reluctant to close events in 1918 and they were the hardest hit in the US during the Spanish Flu.

Factoid: Henry VIII stayed in his room and allowed no one near him, till the Black Plague passed…(honestly…I understand him so much better now). Just like us, he had no tools in his shed, except social isolation…

And let me end by saying….right now it’s hitting older folks harder… but this genome is so slippery…if it mutates again (and it will). Who is to say, what it will do next.

Be smart folks… acting like you’re unafraid is so not sexy right now.

#flattenthecurve. Stay home folks… and share this to those that just are not catching on. 🤓

WASH YOUR HANDS!

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Where was God.

I have a beautiful songwriter, singer, poet friend named Inda Eaton.

Inda has been on my mind the last couple days…….perhaps because yesterday was her birthday, perhaps because when I’m stuck in my life, one of her songs plays in my head.

It’s called a Prayer for Jo….take second to listen and then tell her how much you love it.

https://play.google.com/music/listen?u=0#/album/B7jflpfgqbaolqqj7endczrtkea/Inda+Eaton/Why+the+Desert

Scroll down to Prayer for Jo…..or listen to the whole album. Ya’ll might have a little extra time 🙂 The music is raw and the lyrics resonate when the world doesn’t seem to make sense………

Now where was God. When the chips came down?

Because all our dreams, they’ve been turned around.

In my mind I need a rest, from the nightmare days.

It could have been anyone, it could have been anywhere, feels like the heat from the Honduran Sun

When this songs comes to my head and I’m a little angry, I change the words chips to shit, because that’s just how I roll, potty mouth and all……

Where was God, when the shit came down? Because all my dreams, they’ve been turned around.

Go ahead, sing it. And change the words. You deserve it this week

So many things have changed- so many dreams been turned around; graduations, weddings, trips, school. People are sad, disappointed, scared and some are angry; looking for something, someone to blame.

In my mind I need a rest. From the nightmare day.

Here’s the rat bastard thing about life……sometimes there is no one to blame. Sometimes things just happen. Sometimes we have to except that we might not have any control over the big overarching issue.

Not having anyone to blame is the worst. It’s so much easier when we can stick our knowing, blaming finger in someone else’s piece of pie.

But this is life; in all of its lovely, unpredictable, heartbreaking amazing glory. This is life.

There were many times in my life when I have asked where was God…..especially when the chips where coming down.

And I have come to this conclusion; God is not what happens to us. God is how we respond to what happens to us.

May we respond with grace. May we respond fearlessly, responsibly and without blame……that is where God is when the chips come down.

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My Corona

I remember a hospital stay with Samantha. She had a temp of 102. She could not hold her oxygen. Her lungs were junky so we consistently had to take a tube that was attached to a suction machine, stick it up her nose and suck yellow glop out of her sinus’ into a canister attached.

Note to reader…… Are you eating? I hope you’re not eating…..

Cough. Go ahead right now. Give yourself a good cough. Make sure you cough into your elbow and wash your hands after- because, well COVID-19. But after you do that, think about all of the muscles it took to cough.

You inhale, deeply. Inhale into your strong, capable lungs. Your diaphragm tenses up, perhaps along with your abdominal muscles. Your throat muscles close your glottis while chest muscles exert pressure. Your glottis opens back up and expels whatever ick seems to be residing in your chest cavity.

Whew! That was a lot. Now imagine living in a body with a compromised diaphragm. With a respiratory system that cannot force air out properly so all of that ick pools back into your beautiful lungs, perhaps damaging your tiny, precious alveoli.

I remember wrestling with Samantha and the suction machine; neither was cooperating. The doctor came in and said, “Your daughter has the Rhinovirus!”

“Oh my God,” I said. “Not the Rhinovirus. What do we do? This is horrible!” I then paused, turned off the suction machine and said, “What is the Rhinovirus?”

“It’s a common head cold.” He pointed to his nose. “Rhino? Nose?”

I looked around at tubes and the machines.

“All of this for a head cold?”

“Well, yes. When your body cannot expel the nastiness collecting in your lungs, all of this for a head cold.”

“What can we do?”

“Nothing, its a virus. Lets get her stable and her fever down. We can send you home with a suction machine.”

I learned how to suction like no one has ever suctioned before, well, except for my friend Maria, she could suction her son Jacob with a skill and finesse that really was quite impressive. In fact, all of my mito moms can suction their Loves with ease. Because being able to cough is a big deal and not being able to cough is an even bigger deal.

The common cold became my Corona.

And now, ten years later, I read the current news updates. Tonight I cancelled an event with friends. I do not condemn medical professionals for what they are doing nor do I think we are over reacting.

I do think the toilet paper thing is odd. But that’s another topic.

Here is what I do know. Our medical system is taxed on a good day. Don’t believe me? Go sit in an ER during flu season. Hang out in an ER room for 36 hours because there are no rooms available inpatient. Wait. Because there is nothing else you can do.

We have a medical system designed to get patients in and out of hospital beds as quickly as possible. Empty beds mean money wasted- want to cut costs? Remove beds. And so our system has done so.

This is not a criticism of our system, it’s just fact.

And for you, healthy, beautiful person with strong abs and a functioning glottis, this is no big deal. You might get sick. You might not. It might suck. It might not. Regardless, I hope I never, ever have to suction you.

But think about every single person you come in contact with today and what they might go home to.

Health is our most precious gift. More precious than the stock market. More precious than that Spring Break trip. Be so very grateful for the lovely, functioning coughing body you have.

And in that gratitude, please be respectful and aware of those who do not.

And Wash. Your. Hands.

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RARE

Join us for International Rare Disease Day, February 29, 2020. Go to http://www.rarediseaseday.org for more information

What does it mean to be Rare?

We have one extra day in February this year! One more day to be with your family. One more day to catch up on that list that keeps nagging you. Another day just to be.

And a day to rally around Rare Disease Day! Rare Disease Day falls on the last day of February; this year a leap day, making the day even more special.

Ironically, us rare folks aren’t so very rare. 1 in 20 of us will be diagnosed with a rare disease in our lifetime. But when you have a genetic mutation shared by 1 in 400,000 in the world, you can feel pretty alone.

One voice in 400,000 is not very loud. But one voice in twenty can create quite a ruckus. Rare Disease Day focuses on that ruckus, focusing on the 300 MM of us with a Rare Disease diagnosis or affiliation to that disease. We represent 6,000 identified diseases. 72% of these diseases are genetic and 70% of these diseases start in childhood.

Rare is defined when 1 in 2,000 are impacted.

Mitochondrial Disease is a rare disease. We will be sounding our YOPP in the next couple weeks- letting the world know that we are not so rare.

What does our YOPP entail?

The rare disease community has several asks and many of them focus around access to scientific knowledge and quality information. Misdiagnosis or delays in diagnosis are life limiting. Since so many of these diseases are identified in childhood, pediatricians need to know when to refer families for genetic testing or to a specialist that can manage complex medical care.

Better counseling and access to newborn screening. Newborn screening saves lives! It is one of our greatest medical advancements. We need to talk to families about this process not in the context of fear, that something could be wrong with their beautiful baby but around good pediatric, preventative care.

I will be in DC the week of February 24th– talking about my family and the families we represent. I am so very honored to do so. Rare can be terrifying. It’s good to know we are not alone.

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Happy New Decade

Stella!!!!!

Ten years is a long time.

If we’re lucky we get 8 or 9 (10?) decades in the precious world. Decades are defined in history; we talk about the 1960’s, the 70’s in chunks of events that forms our world today.

How will our tween and teen years define us?

I thought about this today as Hubs and I drove home from the mountains. What have the last ten years been for me.

In spite of the amazing things that envelope my life today, two words immediately popped into my head.

I fought.

Well, yeah. I guess I kind of did.

In this long span of ten years, I fought for my child, I fought to define a life without my child and without the prospect of additional children. I fought to find myself, to redefine myself, my marriage, my relationship with Hubs and my relationship within this world.

In the span of ten years, I am grateful that I no longer have to fight to keep my head above water but I cannot dismiss the times of frantically treading.

It is true that time heals wounds. It is a horrible truth especially in this society where we expect instant gratification; one day delivery, a pill to make things better, a ‘like’ to verify our worth. Time knows nothing of these things. Time makes us wait, feel, and then poof, hands us ten years of life wrapped up in a messy, beautiful package.

A decade is a long time.

I saddled up this past decade, handed it it’s hat, looked it straight in the eye and said, “You were kind of a bitch.”

It winked at me and rode off into the sunset.

After any great fight, there is reflection.

In the words of our great muse, Rocky Balboa, “It ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward.”

Amen Rocky.

Amen.

Onto our 20’s!

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This time on this Earth

I know this much is true: I feel grateful every, single day for all of you in my life. I am grateful for this life; no matter how hard it has been at times; I am truly grateful.

I am grateful my lungs take in air, my heart pumps my blood and those things allow me to be a person on this earth. Somedays I forget to be grateful of these facts, other days, something amazing happens allowing my gratitude to be compounded by 1,000.

I love the compounded by 1,000 days. Those days when the elements of my life come together in an amazing gratitude vortex ; I walk around with a silly grin on my face.

I am so stinkin’ lucky be alive.

Those days are my elixir, a tonic for harder days.

Happily, as I get older, the compounded by 1,000 days show up more often. Perhaps I search for them more, perhaps the nuances of my life allow me to see them a bit more clearly.

Last summer, I rafted the Grand Canyon with my Hubs’ family. This was not my first trip down the Colorado.  15 years prior, I rafted half the river and hiked out of Bright Angel with my mom, stepdad and brother.

It’s hard not to fall in love with that area. The beauty is raw, untouched and dangerous. Canyon walls touch the sky exposing billion of years of our earth’s evolution. One floats through 75 miles of canyonland, small, realizing how fleeting life can be.

My brother fell in love with that Canyon, like he does with all wild lands. I think he was a bear in his past life.

Last summer I was looking forward to my trip but like everything gets in the way. I landed from a business trip the night before we left, packed in a rush and monitored my business email as we drove towards Utah.

My brother wrote me an email:

“Sis, don’t forget to explore the Little Colorado, stop at Elves Chasm and hang on at Lava Rapids! Look up! Look down! Have a great time. I loved the Canyon!”

I read this and got tears in my eyes. My brother bear can no longer do this trip because mitochondrial disease is a sick, selfish ass.

“Stop,” I told myself as I was frantically trying to answer another work email.

“Look.”

“Remember this time.”

“Be in this life.”

And so I left my phone in car and jumped in a raft.

The River Crew! I am the shortest person in the group!

The first night I woke up to an amazing roar. It was the Colorado, charging down the canyon. I looked up to a cascade of stars framed against the black of the canyon walls. The Milky Way actually looked Milky! There were so many shooting stars, I ran out of wishes. I laid in my sleeping bag feeling infinitely small against this amazing universe.

And I started to cry.

Hubs woke up. “Are you okay?”

“It’s so beautiful. It is so beautiful. We’re so lucky to be here.”

He patted my leg.

“I am just so grateful for this life. To be here, in the Grand Canyon. With you.”  

Sooooooo schmaltzy, right??? But so true. There are not enough words in this language to explain the overwhelming sense of love and appreciation I had for that moment. That moment that is my life.

I am so stinkin’ lucky to be alive

Loss has made me appreciate what is left. When what is left is nurtured, fed and loved, it grows into its own beauty. The beauty will never be what was anticipated, the beauty will always house the loss. But it is beautiful, unexpected and rare in its very own way.

Look around at your table tomorrow; the beauty of a meal, being fed, surrounded by Loves, or maybe surrounded by Likes, make a Like a Love.

And think for a quick moment, I am so stinkin’ lucky just so lucky to be alive.

Happy Thanksgiving!

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Beauty and the Grief

I love pretty things.

I do.

As a little girl, I loved dressing up. I loved make-up. Playing with my Grandma Dodie’s lipstick. When I was three my Papa and Dodie bought me a new dress with pink ruffled undies. They took me out to dinner. I ordered a Shirley Temple and proceed to show off those amazing pink undies.

I tapped around that restaurant in my patent leather shoes like I owned the place.

I still love patent leather shoes. Because they are sooooo shiney.

I wore a tiara in my hair when I got married. I loved it so much I wore it the next day to brunch.

Because I could.

I love pretty. I have battled with pretty. I went prematurely gray at 22. I have varicose veins that look like someone shoved a hose in my leg and I have a speckled face from skin damage. Mohs surgery and a bad accident with Ultimate Frisbee didn’t help any of that. Life has not been kind.

But I still want to be pretty.

It is especially hard to be pretty when grieving. I didn’t dye my hair when pregnant with Jack. When we lost him, I marched into a Fantastic Sam’s and told them to cut my hair as short as they could to let the rest of the grey grow out. The poor hair stylist did this with trepidation and then apologized as I sat in her chair and sobbed. I looked as sad as I felt. I should probably write that poor woman a thank you note.

When Samantha was sick, my only concern was to make sure I didn’t stink.

Breath? Check

Pits? Check

All is good. Bring in the doctors. Pretty is an after thought.

This week I signed up to be a consultant for a skin care line called Rodan and Fields. I have been using their product for two years and I really like it.

It makes me feel…….pretty. My poor face doesn’t look so grievous and dehydrated.

I write this with my new favorite word; trepidation. Being almost 49, my time as Miss Universe has probably passed 🙂 But all of us, no matter what we have gone through, deserve to feel our very best- grieving or not. Crisis or not, we can still be our very best.

And wear our tiara 🙂

You can find me peddling my wares at: https://heathersch.myrandf.com

Or shoot me a message- I will send you samples. And maybe a tiara 🙂

I am now going to enjoy a Shirley Temple. Happy Thursday all.

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Kindness and Your Place in the World

Tomorrow is World Kindness Day. I have a crush on this day. As I sit here and type, I am thinking of ways I can be kind tomorrow and perhaps incorporate acts of kindness into my life beyond tomorrow.

I have been the recipient of many acts of kindness and it has made all the difference. In my deepest, darkest times, I have felt unconditionally loved and that…..that has made all the difference in how I have bounced back from tragedy. YOUR act of kindness has been support and acknowledgement; creating a truth I have clung to; that I am loved and I will be okay.

Acts of kindness, reinforcement from an amazing community, a strong family, all of this creates resiliency to move forward in our darkest times.

Isn’t that what being kind is? Acknowledging another as a worthy person?

I see you, random car behind me at Starbucks. I see you. And I will buy you a coffee.

I see you person running up the stairs to the office and I will hold the door.

I see you team member at work and I will announce to my peers what a good job you are doing.

In holding a door, in buying a coffee, in acknowledging a co-worker, we may give a bit of ourselves, we give time, money, our status at work but more importantly, we show another we see them.

I see you.

In this world we are so busy. We glance at phones, look for likes, ignore what is in front of us.

For one day…..In honor of World Kindness Day.

Stop

Hold a door. Look someone in the eye. Give a dollar. Say good morning. Buy a coffee…..with the expectation that nothing may ever be reciprocated.

Just for one day.

Tomorrow I am channeling my inner Mr. Rogers. I will proudly wear my red cardigan and prompt you to be my neighbor. I’ve always wanted a friend just like you.

Mr Rogers Dance GIF by Won't You Be My Neighbor - Find & Share on GIPHY

In the words of this man, The world needs a sense of worth, and it will achieve it only by its people feeling that they are worthwhile.

Happy World Kindness Day. You know what to do.

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Zombies vs. Calavera- Perhaps this is what’s wrong in our culture

Happy Dia de los Muertos! Or Day of the Dead for those of us who did not do well in high school Spanish 🙂

I love this holiday. Celebrated all throughout Latin America-celebrating our dead, a celebration of love and respect for our family members who are no longer with us.

What a cool day. Because let’s face it, the only two constants in life are death and taxes.

In contrast, we have Halloween. I’m a so-so fan of Halloween but I’m not a big fan of super spooky things.

Halloween is spooky and marked with fear. The Celts began a festival called Samhain 2,000 years ago. It marked the end of summer and the beginning of winter- a time when us humans are vulnerable to cold, disease and an absence of food. For one night, October 31st, the ghost of the dead came back to earth and caused mischief, damaged crops and terrorized the poor Celts. Animals were sacrificed, crops were burned; all to keep these mischief makers away for the rest of the winter.

And today- our dead are menacing. They come out of the ground, all decayed and stinky, they eat our brains and the only way to ‘kill the undead’ is to crop off their heads and burying them deep in the ground where they can never come back again.

Gruesome. Right? Don’t mention the dead because they are bad and they will eat your brains.

Perhaps this underlying stigma is why those of us who grieve; search for a way to grieve and honor our loves without losing brain matter.

On Dias de los Muertos, alters are built in homes to invite loved ones back into the realm of the living. Water and food are offered after such a long journey. Marigolds are scattered in the household. And to date, not one person has been eaten by a zombie.

Not one person!

I know my Loves are around. I feel them in a pink sunrise, I smell them after a Spring rain. How lovely to have a day to celebrate the people we love with color, joy and song instead of shoving them back into the ground.

Happy Dia de los Muertos! I challenge you on this day to look around and remember your Loves with joy and celebration. I challenge you to ask one person about a Love they miss. My Grandma Dodie loved a good, dry martini; perhaps today we will have one together 🙂

The Samantha Years

Serenity Now!

It’s been a hell of a day.

That’s right…..I skipped ‘quite a day’…..

Passed over ‘heck of a day’….

And went straight to hell.

The good news is (knock on wood, knock on wood) it’s day two and no seizures.

The bad news is Samantha still has pancreatitis. Your pancreas secretes an enzyme called lipase. Normal lipase levels range from 10 to 150. Samantha’s lipase is 476; meaning her pancreas is working overtime and is still inflamed.

Pancreatitis is very painful and the only thing you can really do is give your belly a rest. We ‘rested’ her system a couple days ago but only for 12 hours. As soon as we started feeding her again, her levels climbed up.

So she’s back on I.V. fluids and the keto wean is on hold.

Samantha in extreme pain is just awful. She writhes, cries and can’t tell you what’s wrong. Today she has gone from sleeping, to crying, to sleeping, to crying. I am hoping this belly rest will help.

But again, the pancreatitis is a result of the diet so I do feel we’re doing the right thing in taking her off.

Hubby could not make it out of Budapest before the ash shut the airport down. Therefore he and a buddy hired a car and drove from Budapest to Rome….one of the only airports still operating in Europe.

Ah….the 12 hour scenic tour through Hungary, Austria and Italy. He should be driving through the gates of Rome as I type.

If all goes well, he will leave tomorrow morning, onto Boston and home tomorrow night. If Rome closes in the next 12 hours, he will probably take a boat to Northern Africa and fly out from there in the next couple days.

But to quote Scarlett O’hara, “I won’t think about that now. I’ll think about that tomorrow.”