YOPP!

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

Ah, thank you Dr. Seuss.

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

Energy…..tired…..

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

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

Energy is everything. Energy keeps us alive.

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

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

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

We had an ear for a day.

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

My our YOPPs be heard.

 

I have PTSD- and that’s okay

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

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

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

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

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

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

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

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

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

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

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

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

Combat changed her, some may say

Her child changed her, some may say

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

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

To Healing.

Shiny New Penny- Week One Check In

New Years check in week one.

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

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

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

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

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

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

That’s right. Minivan.

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

Brother has this because he needs it.

Did I mention that Loveland was nutty for a Thursday?

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

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

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

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

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

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

No answer.

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

“Hi! Are you parking here?” 

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

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

“Oh. I didn’t hear you.”

“I told you……three times”

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

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

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

But I was bothered by this interaction.

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

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

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

I walked over to him.

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

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

“Things get a little crazy with these spots.”

He laughed. “Yes, yes they do.”

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

And this time I meant it.

Week one under the belt.

 

 

 

 

Well Hello New Year

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

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

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

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

Perhaps it is.

Perhaps this is something to work on in 2019.

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

Ironic, huh?

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

I am letting go of my lies.

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

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

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

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

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

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

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

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

Happy New Year.

How Very Grateful

I have just finished Girl Wash Your Face by Rachel Hollis. And I recommend. It’s an easy read, a funny book and I keep quoting her.

She talks about the lies we tell ourselves. The lies we believe and repeat to ourselves. And repeat. And repeat. And repeat.

As a grieving Mama, I thought ‘what lie do I tell myself?’

‘I should be beyond my grief.’

‘I should be beyond my grief.’

‘I should be beyond my grief.’

Truth is I am no. Heck no. Nope. No sireeee.

And when I believe my lie, my real feelings fester and my voice is subdued. Sometimes my voice is all I have and fester is such an ugly word.

This weekend, a dear friend sent me this gift; the video below with the wish that Samantha would have been in the Super Power Baby Book.

I sat in a coffee shop with non-lie alligator tears streaming down my face embracing my Christmas blend. Vulnerable, raw, honest.

Thank you dear friend for helping me live in my truth.

Watch here.

May the Gratitude in My Heart Kiss All the Universe- Hafiz, Sufi Poet

Loves.

Loves,  loves, loves.

Yesterday was Colorado Gives Day, a chance to give to our local nonprofits.

And Lordy you gave!

You sponsored a top family grant

Help with respite

30 bottles of ubiquinol shipped from Montana to New Mexico

Gas Cards

30 stays at the hotel across from Children’s so tired families can be close to their loves.

Gift cards that can be collected at the hospital for a much needed cup of coffee

Scholarships to national mitochondrial conferences

And a support group to families when life seems unsupportable

I KISS THE UNIVERSE in my gratitude! You are love. And I love your love.

thank you text on black and brown board
Photo by rawpixel.com on Pexels.com

Two Days Until Colorado Gives Day!

Did you know?

If you are a mito patient at Children’s Colorado, you can mosey on down to the volunteer office and ask for a gift card?

And they will hand you that gift card.

And you can use it for whatever you please.

Be it a Green Goddess Salad over at Panera.

Or the French Toast at the cafeteria (which is really pretty good)

Or some fancy lotion and some cozy socks.

Or COFFEE at Daz Bog!

No matter.

All because of Miracles for Mito.

Yeah, we got your back.

The Kids are Alright

I have been looking through quotes to find the right words.

I have looked through George H.W Bush’s repertoire to state how I feel. RIP 41.

And I found the quote about broccoli. But I like broccoli.

And then as I started to write this post, Hubs put on The Who and the song The Kids are Alright came on.

The Kids are Alright. And that is it.

ethan santa

Miracles for Mito hosted a Christmas Party today. It was a great day! We were at the Anchor Center for Blind Children which is an amazing place. Samantha was a student there and everytime we host a party, I feel a tad nostalgic. My nephews joined us today. They ran up and gave me a hug.

“Isn’t this a cool place?” I said. “Samantha went to school here.”

“She was so lucky! She had a ball pit!” Said one of the Phews.

And that got me all teary.

But the Kids are Alright.

nat and santa

Today every kiddo got a present. We had amazing food compliments of Angela and Matt. Our docs talked about what we are doing here in Colorado. And really, we are doing some cool things

austin pic

Here is our doc talking about current research. I love this community.

I MAY have been related to Santa and Mrs. Claus today. Jim, my stepdad stepped up to be Santa and he was amazing. Mama Judi was Mrs. Claus. We talked about being Santa last week.

“You got this,” I said to Jim. “Just be Samantha’s Santa.”

And he was. He went up to every kiddo in a wheelchair who could not come to him. He talked to them, held their hand….Missy Moo was proud.

And The Kids are Alright

kiddos santa

It is hard to put into words……this devastating disease, this strapped community, our own  personal grief……and come out on the other side with hope, love and and overwhelming sense of gratitude.

But thats how today was. My heart is so full. You all are amazing. And if we have nothing else, I guess we have each other, and tonight? That is enough.

This Kid is Alright

Thank you. Seriously. Thank you

 

 

 

 

Five Days Before Colorado Gives Day!

Yesterday the world came together in a philanthropic effort for Giving Tuesday! It was impressive and heartwarming to see all of these amazing organizations.

And alas, Miracles for Mito was silent on this day.

Do you know why?

We are saving all of our donation moxie for Colorado Gives Day; only five short days away!!!!

Since are nonprofit was born in Colorado, serves the Rocky Mountain region and supports research at the University of Colorado, Colorado Gives Day seems appropriate.

For the next FIVE DAYS, I will post how our grassroots org has made an impact in this state we love.

Here is day Number 1!

DO YOU KNOW that many mito patients are told to take a very pure form of COQ10 called Ubiquinol as a therapeutic remedy?

A bottle of Ubiquinol is $125.00 out of pocket.

Miracles for Mito delivers Ubiquinol free of charge to our Mito families.

Your donation helps our families receive this supplement.

So hey, thanks! That’s pretty nice of you 🙂

I Love My Mitochondria

Lordy I do.

I do, do, do-do-y do.

None of us would be here without these tiny, beautiful organelles.

Like any love affair it is peppered with imperfections, loss, heart ache, curses, and the occasional throwing of a dinner plate across the dining room.

Regardless. At the end of the day. I love my mitochondria.

I love them so very much me and my favorite people made a t-shirt to proclaim our love.

I love this t-shirt.

I love my mito shirt

Here is what I love most about this messaging. Mitochondria are complicated, mitochondrial diseases are terrifying, if I hadn’t been forced to know about my mitochondria, I wouldn’t know about my mitochondria.

But now I know. And now I love them and I want the rest of the world to know them and love them too.

So hence my shirt. Which can be your shirt too! Send me an email and we can get you all set up.

Second best thing about this shirt? It makes you look really smart. Like crazy scientist smart. And for someone who got a D in chemistry junior year, I love to look scientist smart.

Here’s me and researcher in Toronto. He stopped me wearing last years shirt, “Hey, I love my mitochondria, are you a scientist?”

scientist

“Well of course! What other nerd would be wearing an I love my mitochondria shirt?”

No, alas, I cannot lie. I am merely a paramour of my mitochondria.

But keep working smart devoted researcher. Keep working on these complex forces of energy…..I’ll keep talking about how super important they are.

Love.

Your.

Mitochondria.

And get a shirt too!