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One Million for Mitochondria- Blazing the Next Trail

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.

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Offense, Defense, Punt

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.

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Blame is awesome

Poop-a-loop. It seems…..that as hard as I try to make my life simple, sometimes life is just hard.

And I don’t try to make it hard. But lately, lets really face it.

Life is kinda hard right now.

When life is hard the thing I really, really, really like to do is blame someone.

OHHHHHHHHH blame so fun. It really is.

Blame takes all my fear and anger it rolls it up into a flaming ball that is so easy to hold in my hand and launch.

Launch.

I don’t care where its going but its going to be good- its gonna hit with a BOOM and people are gonna know.

That I’m angry.

And my flaming blame ball hits. I feel its heat. Its wrath, MY wrath. My Power….BAHAHAHAHHAHA.

But.

Like pouring lighter fuel on a fire, it only singes some eyebrows and is done in seconds.

It’s awesome. And then unfulfilling.

And leaves me wanting more.

So let’s launch another.

And another.

And then I don’t know why I’m launching, why I’m SO angry…….only that it feels good.

For a second.

But life as blame is hard.

It’s almost as hard as life as joy.

It’s harder to create a big ball of joy to throw at someone.

Joy is squishy. It does not conform to one shape.

It has no rules, it cannot be contained. It requires time and thought.

It does not create a BOOM. God, I love a BOOM.

I’ve seen a lot this week. Battles between maskers and unmaskers. Vaxers and Unvaxers

I still have not seen my mountains.

Mice ate my Mercedes.

I’ve seen desperate people chase a plane to escape their country.

Stop.

I’ve seen desperate people chase a plane to escape their country.

And I have to focus on that last point. As I sit here, in my house….knowing that my loves are safe, and fed and I have few discomforts and I don’t have to race a plane……

I have one job……What can I do to de-escalate the blame?

I think I’m okay. I think you might be okay. What can we do, as people in a safe space, what can we do to stop the blame?

Where is my squishy, non-conforming joy ball?

However, I still do….blame the mice.

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Delta

And so you’re back from outer space
I just walked in to find you here with that sick look upon your face
I should have changed that stupid lock
I should have made you leave your key
If I’d known for just one second you’d be back to bother me

Lordy.

How are we back here?

How? I want to be super angry. I want to school some people on public health; small pox, polio, seizures, erectile dysfunction and how science solved these issues. .

But anger gets us nowhere and perhaps fuels additional anger so instead I am channeling my inner newly vaccinated, hopeful, Springtime Heather.

Rewind back to March 22, 2021 Heather.

Oh, she was so sassy and unshaven…..because she really had not gone anywhere for a year.

My Vax date was March 22: 11:45 am MST

I printed out everything. Every notice, every request for information….I filled it out,

Signed, sealed delivered. I’m yours.

At 11:00 am MST, I jumped in my car and drove to the Adams12 Fairground and waited. And cried in my homemade RBG mask.

And thought- thought about the past year.

How much had changed- plans that were canceled……I thought of my entire at-risk family, how much l love each and every one of them and how fortunate we all were to come out of this and get a shot 12 months later.

Waited.

So Grateful.

For that first COVID shot.

And then I got bored.

And switched from Aretha to Hamilton

I am not throwin’ away my SHOT!

I am not throwin’ away my SHOT!

Heck ya Ham BONE! This nonsense is over. OOOOOVVVEEER. We were all gonna get our shot. We were gonna kiss each other; super sloppy on mouth. No tongue……’cause that’s weird.

I drove my car into this great big garage where a lovely woman took my information as I cried.

She asked if I was scared.

Heck no lovely 12 year old nurse, I’m not scared I just love you. And I love what the HELL ever you are shooting in my arm if that means I can love on my Granny, and my family….

Can I go on vacation? Someday? Your sloppy bun is super cute.

She stuck a needle in my arm and let me take her picture. First shot done…..the rest of my life…..right ahead of me….save three more weeks and another shot….

I’ve got all my life to live

I’ve got all my love to give

I am not throwing away my shot!

And today Heather?

F*cking Delta.

And just like the virus, the talk now seems more harmful, contagious, deadly to a society that just…..wants…..to…..move…..on.

Being scared is hard. Wanna be super scared? Come sit in an ICU where no one has the answers. Come sit where you have to face the reality that you have absolutely no control.

I got joyfully, proudly vaccinated 5 months ago.

And I promise I have not grown a second head nor do I feel a need for brains, extreme violence or human blood.

But I do……..

I do feel a need for connection.

Community. I neeeeeeeeeeeeeeeeeeddddddd that. I need it without fear. I need it without anger.

I need to love on my sweet nephews who are about to start elementary school. My sweet, smart boys who think farts are super funny and cats rule the world and cannot get vaccinated yet.

I need to love on them without worry.

Please give me that.

Do not throw away your shot.

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Words to Gran:

We said goodbye to my Gran this weekend. It was lovely and sad and heartfelt and full of family. I had the honor to share my thoughts at the service. I thought I would share with you 🙂

Earlier this year my Gran, my mom and I all qualified for AARP.

It was a magic moment.

I grew up with my Gran.

And my Gran grew up with me.

It was lovely.

And terrifying.

I got to know my Gran in a way few people have the luxury to know their Grandparents.

I had a gift. Perhaps the most precious gift- the gift of time.

I lived 50 years, five months and 28 days with my Grandmother.

Very few people get 50 years, five months and 28 days of unconditional love. I stand in front of you having unconditional love withdrawals. If anyone would like to pat my head, hold my hand, and tell me how beautiful I was a baby, I would really appreciate it. Seriously, there are applications in the back.

How amazingly lucky am I to have had my entire life with my Gran.

She is a part of who I am. I would refer to my Grandma at work. Something would come up around a Veterans organization or a nonprofit and I would say, “Well I was talking to my Grandma about this…….”

And everyone younger than me in the room would give me a look……… “No you weren’t. You were not talking to your Grandma about this because you are old and old people do not have Grandmas.”

But I did.

I had my Grandma for 50 years, five months and 28 days.

When people heard of her passing, the stories shared were amazing….a contagious laugh, a mischievous spirit, a tad irreverent and joyful.

So very joyful.

My Gran chose joy.

My Gran. At 25 she became a widow with two small children. It was 1956- a time when women could not open a bank account.

Women could not buy a house. They could not establish a line of credit. And she was grieving a terrible, terrible loss.

She was 25.

I think when life hands you something so hard when you are so young you can either retreat or you can declare to the universe that this will not destroy you.

I do believe my Gran made this declaration with a resounding yawp; determined to make the best of life when life presented her with the very worst.

And so she did.

My Gran chose joy.

Perhaps chose is the wrong word.

She owned it.

My Gran was big when you should be small.

Naughty when you should be nice.

Loud when you should be quiet.

And the more you asked her to hush, the more she was unable to restrain herself. To ask  my Granny to be any less than who she was like asking the sun not to rise in the morning.

Beautiful, amazing, and unapologetically unconventional

She told me……ladies did not pass gas.

She told me……ladies fart.

And as we all tried to block out some really stinky holidays; holding a nose at Christmas Eve, wondering why that scented Christmas candle isn’t working as it should, we were laughing uncontrollably, wiping tears from our eyes and hoping

Hoping.

That you did not inherit Granny’s super tiny bladder.

My Gran was a full grown up with the bladder of a two year old.

I say this because incidentally, I have inherited said bladder. It is a constant struggle- do I laugh or do I pee my pants.

Usually it is the later.

“Tell me about your family.”

“Well, they fart and then laugh until they cry and then try not to wee their pants. It is a family trifecta.”

And. It is a beautiful trifecta.

My Grandmother worked her life as a solderer.

In full disclosure I had to google what it meant to be a solderer:

To solder: To solder is to apply an alloy;  a copper or a silver, to a joint to unite two metal objects together- without heating those objects to the melting point.

Solder is also referred to as anything that joins or unites.

Of course my Grandmother was a solderer. 

Because my Gran was solder.

She was able to join and unite so many people around incredibly random events.

She could- heat up a group to almost…almost….but not quite to the melting point and fusing them together.

No wonder Honeywell and Martin Marietta loved her so much.

My Gran became a Hospice volunteer when her sister Annie died. She loved this work.  In my own memories, I remember her talking about this work more than any other career. Perhaps this was her way to let others know, they could still chose joy.

This joyful woman found my Grandpa Al and in June they celebrated their 64th wedding anniversary. The day she passed we sat with Grandpa and gazed at their wedding photo;

She was 26. So much life already lived and so much life ahead.

“Youth is a gift of nature, but age is a work of art”.

How lucky I was to be a part of that tapestry.

Yes. 91 years. And we can say she lived a full life and it was her time and blah, blah, blah. But I will fiercely miss my irreverent, loving, lippy, naughty, joyful, flatulent, tiny bladdered, perfectly imperfect grandmother.