Life, Grief, Hope, Joy, Writing it Out and Loving your Mitochondria:
Today was a non-descript day but you know what was fun?
Determining what would be my main cause of delight……
Was it my new slippers?
Was it the joy in delivering meals to friends?
Was it listening to Eddie Vedder?
There was no winner. Only thinking through the day what elicits delights.
Today was a day.
Today was a day filled with more news of those who lost houses.
Today we said goodbye to a good man- we watched the service via Facebook Live due to COVID outbreaks.
But today as I absently took out the trash, I was greeted with cold Winter air and this clear sky above.
The simple, unexpected beauty took my breath away.
And that’s the thing about Delights. It’s not day or a time. Delights are fleeting moments of Joy right before our eyes…..begging our attention, wanting to be noticed.
If only for a brief moment while taking out the trash.
Happy Day Three.
I think many people come to this area in search of beauty- in search of connecting their soul to something a bit more wild.
My own healing weaves heart-pumping climbs up Flagstaff mountain to look over the front range. As I stand on top of summits, stinky and sweaty, I always think in gratitude how extremely lucky I am to live in such a place; to summit such beauty in the morning, indulge in a breakfast burrito and be at my desk at 8:30…..okay maybe 9:00.
And the majesty of the view extends to the beauty of this community. My social media channels are full of friends reaching out to others with GoFundMe links- supporting so many who have lost. Donation centers are posting that they have so much- they are asking people to spread the word to let those impacted by the fire that they have supplies and would love to distribute to those who need them.
Therefore, my second Delight of the Year is this amazing, compassionate, generous community. How lucky am I to not only live in this place but live here with you.
Christmas night I sat with family and friends and we talked about bidding adieu to 2021- a year of false starts, unmet expectations and uncertainty.
“I never like to hold a grudge on a year,” my friend Heather said, “365 days lead to good things and bad things. No year is ever, truly 100% bad, is it?”
I fully agree! As a person who does not like sadness, my religion is finding the not sadness 🙂
I say this having just come off an ugly cry phone call with a friend- a dear friend whose SIL lost her home in the Marshall Fire.
This time is heavy. F*ck this time is heavy.
I was speaking to another friend today, “It is in my person to feel the feels, but Ginger….I’m tired of feeling the feels! We need a break. How much can we absorb?”
I am not a bounty paper towel.
And we are fine. Just like any other time of crisis in the last two years……we have heat, we have water, we have each other. We are fine.
But winds raged in our part of town on December 30th- 110 mile winds ripped power lines. Broken power lines hit dry grasses that have not seen rain in over four months. Dry grasses made explosive kindling. Kindling made hot embers. Embers flew through the sky in 110 mile winds…..hitting other trees, barns, homes……so many homes.
And suddenly my beautiful part of the world was on fire- extreme, intense, firestorm, fire. As pre-evac warnings were issued, my brother’s family stared to pack their van. My nephews packed their nerf guns from Santa. When you are five and told to pack a bag of important items, screw the toothbrush, get the nerf guns.
I write this knowing how fortunate they were to consider what to pack- thousands of other families grabbed their loves and left with hope and a prayer.
And now we sit in the new year in this charred land- a land that we love. A land that we hike, bike and live in. Where do we find hope in this promised new year? How do we say goodbye to a year of conflict, heartbreak and loss?
Well, I just don’t know.
And because I just don’t know, I had to write down my top ten list of gratitudes for 2021: Things are quite crappy but what makes us happy 2021 list:
Another year- a year of life with you lovely humans.
AND because no good deed goes unpunished- no awesome event is without numerous failures…..I feel we must try for another 365 days of delight.
Last year I made it to February. Lets try for March! Check out tomorrow for day two of Delights.
Delight Day One: I delight in my Tribe. Those who offer no solution, only communion, harmony and trust. Lets move together in this New Year. Let’s pause to Feel the Feels, knowing we are human complex beings.
It won’t always be good.
It won’t always be bad.
It will be.
And I will be with you.
Today I deleted my Miracles for Mito auto signature from my Google account.
And I wondered, “will I ever be an Executive Director again?”
And then I wondered if I wanted to be an Executive Director again.
Many have reached out to me as we have closed Miracles for Mito, asking if I am okay. Some have noticed a change in my tone, perhaps an underlying touch of sadness.
Ugh. I hate sadness. Sadness sucks. I am much better at happy.
And I appreciate those who have called me out on my tone. Yes, I have sugar coated this transition a bit. Yes, my heart is bruised a bit.
Ironic isn’t it? I have posted here when Hubs and I have gone through tough times, chatted about my inmate journey with grief, cried like a baby with you when we moved out of our old house, but I have diverted this very important, painful decision…..nothing to see here….nothing to see.….keep moving on….
I wonder if I will ever be so passionate about a cause again. I know the answer is no and I know that’s okay. Nothing is stronger than Mama love coupled with grief and the desire, no……the NEED to change the world.
I still have a little ember burning in my belly but it’s not enough to burn the house down.
I have learned that this rare disease space is hard. Family support is hard and a huge trigger for my own trauma. We are all fighting to tell our stories. It is in our stories that our kiddos live on. In our stories that their legacy prevails. As a result, we are driven by broken hearts. Collaboration is hard. We all want to be the hero in advocating for a horrible, rare disease that has no good outcome and crappy federal funding.
I do not regret my decision. I am excited to see how we can rally around my brother and move the needle on mitochondrial research in a local capacity. But I do believe you can live in a place of certainty and heartache; knowing that your heart will heal and trust the certainty of your decision.
And as thoughts come during the winter solstice, during our darkest days, it is time for me to trust what I cannot see next- feeling, touching, reaching out for this next truth.
Many of close the year with bruised hearts. May the certainty of our decisions carry us to our next light. May the light in me honor the light in you.
And yes, hard feelings are still hard.
On Sunday I made a pie. It was a good pie, a pretty pie. A pie so pretty I felt the need to post my pie prowess on Facebook.
Who am I kidding, I post everything on Facebook but I did like this pie.
And a couple people responded with pie crust angst- people who I admire, smart people who I respect…alas, the saying easy as pie is just untrue. Pie, like everything else can be difficult.
I too once had pie crust angst…..therefore I am posting a post about food.
Don’t let me get into this habit. It’s so easy to talk about food. Almost…..as easy as pie.
So here folks, is my story about the butter crust.
I did not grow up on butter. As a child of the 70’s, food was not edible unless it was processed. Margarine, American Cheese, Cool Whip……butter was evil and fattening…..pass the Velveeta, Miracle Whip and Wonder Bread.
Time in Germany and marrying a man with Danish heritage has taught me one thing….
Butter is love.
The amount of butter we consume is somewhat staggering.
Last weekend we entertained. The conversation went somewhat like this……
“The crust on this filet is great. What did you do?”
“Sautéed them in butter.”
“These onions are amazing. How did you get them to caramelize like this?”
“Butter.”
“Blistered greens beans?”
“Yeah…butter. Would you like some more wine?”
So back to the pie.
Butter.
I too was daunted by a non-processed, whole butter pie crust.
But you can do this. Lets start with some basics…..
Number One:
This is a pastry cutter.
You need this. It’s like four forks on steroids’. You need this to break up the butter in the amazing butter crust. Some say a Cuisinart will mix the same. I say no! Seriously, I think too much air gets in the crust with a Cuisinart. Get your arms in there with a pastry cutter- remember this is love.
How can you celebrate a holiday if you can’t tell your family how sore you are from making pie dough?
On another note…..I was going to take my pastry cutter to Virginia for Thanksgiving but I think TSA might confiscate it as a weapon.
Thought Number Two: Vodka vs. Ice Water
What the whaaaaaaa? Yes, I can mix alcohol into any conversation. There are many recipes that use cold vodka instead of ice water to mix the crust.
My thought– Sigh, no vodka. I know, it breaks my heart to say so but I think vodka makes the crust too dry. Granted, I live in Colorado and we haven’t seen moisture in like 3,421 days…..so go with what works.
Thought Number Three: Plastic Wrap
Who promotes plastic wrap for anything? Yes……the evil of all globally minded citizens but trust me…..take that chilled ball of dough and roll it between two sheets of plastic wrap. Forget the flour- go straight to plastic wrap. The crust rolls out beautifully and slides right into the pie pan.
Cold butter, cold (ice) water, pastry cutter, plastic wrap and a sense of ‘hey y’all…… I’m making you a pie. It might not be the best pie but it’s a butter crusted pie. Because I love you.’
Love goes a long way….almost as long as butter.
And because I get ALL of my sources from The Google…..here is the recipe I use. Go forth with love and butter. One more note- I use salted butter and do not add the extra salt….. really…..unsalted butter should be banned from civilized society.
And Happy Thanksgiving Dear Tribe. I am grateful for you all.
July 25, 2010, I sat on a gurney in the middle of Littleton Hospital. I had wiped a series of endless tears, knees curled up, police milling around, nurses giving me sad, uncomfortable looks……I was desperately searching for meaning in my life.
We had just lost our girl.
I took a wadded, snotty Kleenex in one hand and held my Aunt Tracy’s palm in the other, “I don’t know what to do with the rest of my life.”
She squeezed my snotty hand back, “You will find it.”
I wasn’t so sure. I wasn’t so sure at all.
Somewhere along the twisted, half-blind trail of grief, we started a memorial fund for Samantha. I stared at the $8,000 we had raised and wondered the next step. What to do with this money? Donate to Children’s Hospital? Give to the United Mitochondrial Disease Foundation? Take the money and run? Mexico is nice this time of year……
Instead, my dad and I filled out an application with the Colorado Non-Profit Development Center (CNDC), with the goal to become a nonprofit supporting families impacted by mitochondrial disease in Colorado.
We thought about a name……I wanted a name that was agnostic to my grief, a name that was not about me or my family, I wanted a name that everyone could relate to…..and Miracles for Mito was born.
In the spirit of strength- because no one should walk this journey alone.
The CNDC accepted our application and we started with the $8,000 from Samantha’s Memorial Fund. My friend Laura helped to create our beautiful logo. I cried in a Walmart parking lot as I reviewed the butterfly composed of two hearts with the intricate mitochondria connecting the wings. It was perfect.
It was love. It was my heart. It was my grief, my soul.
Eleven years later, it is with bittersweet feelings that I write this post. Eleven years later, I announce to this sacred tribe that we are dissolving Miracles for Mito as a nonprofit.
I want you to know that eleven years later, my heart and mind have settled into this decision. I will always walk away with apprehension, wondering what more we could have done, the difference that could have been made.
I also want you to know that eleven years later, I am okay to move on from this space. I need to move on from this space. That eleven years later, the half blind, grievous person has given herself permission to do something else with her life.
Sometimes movement is a gift.
What will we do next? Stay tuned. I will not sway far. I will continue to climb mountains and ask you for money in the sake of mitochondrial research and my dear family……it will just look a little different.
Elven years ago I was shattered. Eleven years ago you supported my cause…lets move forward in the spirit of strength…..and I thank you for never letting me walk this journey alone.
Let’s find out what’s next.
Sigh.
That is my post-two-girls-weekends’ sigh. My post belly laugh, very dehydrated, kinda tired, so grateful sigh.
The past 20 months took so much: over 5 Million souls worldwide, 775,000 in the US.
The past 20 months reset everything; our work, our relationships, our health, our trust.
Personally, I have navigated these times somewhat unscathed, so unscathed and so distracted by everything else going on the in world, that I didn’t realize I was kind of scathed.
We need each other- not just in a zoomie call sense or a text-you sense but a I need my people in a deep hug, embrace you, committed time sense. In the last 20 months of convincing myself I was okay, I forgot how much I miss you and that I’m really not so okay if I can’t be right there with you.
Driving up to Vail on Girl’s Weekend part 2, I was talking to a friend on how best to connect when things are chaotic. “When things are nuts,” she said, “I can’t dive into the nuttiness over a quick conversation. I need time; time to unravel my feelings, time to separate myself from the chaos.”
I laughed at the irony, “So when I call on my way to swim and I say I have ten minutes and cell phone service is bad but I really want to know how are you doing……that’s not helpful?”
I love this word….unravel.
To unravel: to resolve the intricacy, complexity, obscurity of……..
Unravel takes time; coffee by the pool, hikes in Vail Valley. Unravel takes hugs so deep you feel the others’ shoulders relax and you breathe the same breath. Unravel takes trust, heads on shoulders, someone grabbing your hand and saying, “I’m so sorry about your Grandma,” and you holding back and saying, “I’m so sorry about your Mama.”
Unravel is a box of See’s Candy purchased last minute in the airport to honor a dear Love, Melissa Etheridge, Crowded House and an impromptu dance party. It’s only once the tension is released and the knots loosen that what once seemed like an insufferable, unworkable mess becomes the material for the next great project.
I forgot how lovely it was to unravel with my friends. The importance of unraveling. The need to unravel.
After two glorious weekends, I came home and kissed my husband; my partner in these last twenty months, the one who consoled me when I told him through big tears during our stay at home orders that I needed him to be a better girlfriend. My person during this time.
“How was the weekend?” he asked.
“So lovely. I love this time with my beautiful, strong, complex friends. We unraveled.”
This year collaborative efforts from Summits for Samantha, Miracles for Mito and generous personal donations marks $1 Million donated to the Mitochondrial Clinic at CU Anschutz…..ridiculously proud does not do justice to how I feel about this number.
It’s pretty fun to make this announcement during Mitochondrial Awareness week- a week committed to education and awareness about this incredibly sucky disease. If you know me and have traveled on this journey, you know ALL ABOUT your mitochondria and the need to love them unconditionally. LOVE YOUR MITOCHONDRIA!!!!!
But I have a confession……
16 years ago I really knew nothing about my mitochondria. I knew them from biology class as the Mighty Mitochondria, the powerhouse of our cells but I really had no idea how freakin’ awesome and instrumental they are to life.
I miss those days.
A mitochondrial diagnosis is so hard. Half the journey of getting to a mitochondrial diagnosis is getting the disease diagnosed. And after many tears have been shed, many of us sit across from a specialist to only hear fated words…..
There is no cure……
Progressive……
We just don’t know……
And we walk away wondering…..how can you not know? How can you not tell me what to expect? How can you shrug your shoulders? How can there not be something, something hopeful or at least definitive that you can tell me?
It sucks being a medical pioneer. Or having your child be a medical pioneer or in many cases, many Loves in your family, being a medical pioneers; to be the first to adapt to new technologies, medicines and therapies…..
And in many cases we are the first……The first family to have a certain mutation. The first to be part of a clinical trial. The first to rally around new FDA guidelines. The first to try an off-label med.
Why is Mito so hard?
In many ways Mito is new territory. The first molecular diagnosis of a mitochondrial disorder was in 1988- 33 years ago.
33 year ago I was a junior in high school. Now, I KNOW I’m an old lady but when the Greek physician Hippocrates (460-370 BC) used the word carcinoma to describe cancer forming tumors, you know we are a bit behind in Mitochondrial research.
Ironically, both cancer and mitochondrial research have advanced significantly since I was a junior in high school- much of this has come from the world’s largest collaborative biological project- we mapped the human genome. It took us 13 years to map the base pairs that make up the human DNA. This mapping has been a springboard to faster genetic diagnosis’, identifying causes of rare diseases and ultimately therapies and cures to these diseases.
In 1988 we identified ONE molecular diagnosis of a mitochondrial disorder. In 2021, we have identified over 260 genetic mutations that contribute to mitochondrial myopathy.
Is 33 years the speed of light?
In the realm of science, 33 years is pretty fast.
But when your Love is suffering, progress seems horribly, frustratingly slow and we will never get there in time. For those watching skills slip away, for those who live everyday in the face of a progressive disease, nothing is fast enough.
And for that, there is nothing I can say except for I get it. And believe it or not, science gets it too and our amazing doctors at Anschutz…..yeah they get it.
May the next 33 years be absolutely unbelievable.
I know enough about football to make myself sound really dumb sometimes. …..
So please forgive me if you football fans read this and think, “she knows nothing about football and should not be posting about football.”
Because you’re right.
Lately with so much shit going on in the world, I find myself going internal to protect my own energy.
Protect.
What a word.
In going with the protect theme, yesterday I looked up videos around the Under Armour campaign….We Must Protect This House……and yes.
It’s true.
I must protect this house. But I say that and it sounds tribal, defensive, you against me…..
You against me does not feed my well being. I don’t want to protect my house from you. I would like to open my house and feed you yum-yums and wine.
But like any good football game, there is a time and strategy for everything
OFFENSE: To Score!
What makes me happy. What brings me joy. What makes me smile. I will go in search of this like a wild bunny on an Easter Egg Hunt. When I find it, I will record it, catch that ball and do a little dance at the goal line, shake my booty and remember that time when I found it, I caught it and shook it up.
Yes, I did use the word Goal Line. Yes, I did have to google it to make sure the terminology was correct.
DEFENSE: Oh…..get my big players out there to stop whatever it is that needs to be stopped. What is in my way from joy, success, happiness… heck not even that, what is in may way of just getting a good nights sleep…..find that out, keep it from scoring and in that case…yes, even protect this house.
PUNT: I am a HUGE fan of the punt right now……don’t know what to do with it, belongs to someone else, not mine, punt.
Okay……I really do know in football that the punt is super important and everyone wants the ball but this is my blog. And when big people are running towards you…. you all punt.
One thing that has resonated through 2020 and 2021 is that I need to up my game. What if I blocked this negativity like a linebacker? What if I punted what was not mine. What if I danced at my touchdowns.
What if I put as much energy into my mental me as my physical me? What if they were both on the same team?
I’ve received some lovely notes from dear friends who feel the heavy. And goodness, after today….it is so fucking heavy.
Fight for that ball- dance when you get it. Protect your house. And Punt.
I’ll be on the sides, with a beer and a hot dog cheering for you.
Welcome to Samsmom. I'm Heather and this is my journey as we navigate love, loss, rare disease, hope and resilency. Our family carries a POLG-1 genetic mutation that took my two children, Jack and Samantha and most recently, my brother Ryan. It's not an easy place to be, but here we are- with humor, love and grace, here we are. 