Monday, December 5, 2016

Colorado Gives Day- Give Where You Live

When Samantha died we raised $8,000 from her Memorial Fund.

$8,000 is a lot of money.

And it could have gone a lot of places; Children's Colorado, the UMDF, MitoAction.....but nothing resonated.

I wanted to make this $8,000 count. Really count. Like Superman stopping the earthquake count.

I wanted to make this Memorial Fund money as impactful as Samantha.

And whatever materialized from this fund, I wanted to keep this money in Colorado.

Because when you are sick, when you are searching for your tribe, it's good to know you have something in your backyard.

Many times I was told how great the Mito clinic in Cleveland is.

And you know what? It is great. It is an awesome clinic. But if you are sick or your kiddo is sick, sometimes Cleveland might as well be on the moon.

Colorado Gives is not just about us: it's about all of the other services our state provides from the Mental Health Center of Denver, to Animal House, to Rocky Mountain Food Bank.....the care and compassion generated here is pretty stinkin' awesome.

So tomorrow if you have an extra 10 spot in your chinos, pass it onto your favorite local nonprofit.

Give local.

Because if you are ever looking for never helps to hear "well you know, they have a great center for this in Albany."

Thank you awesome tribe. You can donate to your favorite Mito Cause here:

Friday, November 11, 2016

Happy Veterans Day

I spent three years in Germany during my twenties.

It was one of the most memorable times of my life. I was a civilian working for the military at an Armed Forces Recreational Center.

I served those who served.

Really I taught the Littles of those who served how to ski, which wasn't a bad gig in the German Alps.

In the summer I found random jobs; lifeguard, pizza delivery and one summer at the German-American Golf Course.

I worked in one of the most beautiful places on 

Image result for garmisch germanyearth

It was also 1994, 50 years since World War II  and the impact of what happened here two generations ago was palpable.

The golf course sold American candy which was crazy because we lived in the land of the very best chocolate and we were trying to pawn off Twix Bars and Reese's Pieces. A Germany man would come in often and buy ten Hersey bars at a time.

I asked why the Hersey Bars.

"You have the very best chocolate! Right here! What's so special about a Hersey Bar?"

He told me that the Americans came through Garmisch on April 29, 1945.

He was six.

"I was so hungry. We didn't have anything left to eat. The soldiers arrived and they gave the children Hersey bars. They were the very best thing I ever ate. Nothing in the world tastes as good as a Hersey Bar."

He carefully unwrapped the chocolate and gave me a piece. I closed my eyes and tried to taste what he tasted.

I could not

I have never been that hungry. I have never been that scared. I have not had my world turned upside down at age six. 

As he ate I piece, he smiled and nodded his head; perhaps thoughts of hope, gratitude, memories of a six year old belly that felt a little less empty.

I felt so honored. Honored that this man shared this sacred memory and his sacred chocolate. Honored that he remembered the day 49 years ago not with tanks and strange men but with soldiers who share chocolate. And I felt honored that these brave men, my fellow Americans made this small boy feel so much better.

Happy Veterans Day.  

Sunday, November 6, 2016

Angry Brain

Earlier this week I felt I had been wronged.


And it made me angry.


And I played scenarios in my head. And I rethought conversations. And I sat. I sat in my anger.

And it made me dumb.

I am not joking.

On Tuesday I was at work with my anger.

I went into the kitchen to get my yogurt.

And I walked back to my desk with a spoon- no yogurt, which was in the refrigerator NEXT to the spoons. No yogurt just a lonely spoon.

And so I went back into the kitchen to get my yogurt.

And returned with a napkin which I sat under the spoon that both waited for the yogurt.

At this point I started laughing and realized how this issue had taken over my brain.

My anger made me dumb.

No one should go into the kitchen three times for yogurt- no matter how tasty it is.

I finally sat at my desk and peeled back the top foil of the container. The caption on the cover had a statement on top.

BEST DAY EVER- it said.

Enough. I told myself.


Enough being angry. Not that I didn't mind being angry. I felt justified in my anger! Righteous in my anger! But my anger was taking too much space. My angry brain was consuming my yogurt brain. My yogurt brain was just hungry.

I looked at the foil that read BEST DAY EVER and I told myself to be mindful to make this day my BEST DAY EVER.

I licked the blueberry remnants off the foil and stuck the reminder on my cubbie wall.

Yes. Yes, there is a slobbery blueberry yogurt foil stating BEST DAY EVER pinned to my wall now. You call it gross, I call it fung shui.

It was not my best day ever but it was better. Much better that I decided not to let the anger take up so much space.

This anger had nothing to do with the election but it made me think of our politics and how we are two days from Tuesday and that some people are so, so mad. And you know what? You are probably justified in your anger, you are righteous in your anger.... 

But don't let it take up your good parts.

Do this for you, do this for yourself....don't let your angry brain take over. Trust me. I walked a mile to get my yogurt.

Sunday, October 23, 2016

When a Pregnancy doesn't turn out- please note- tough read

The history of my last ten years have placed me on the fringes of normal society.

Sometimes I embrace living on the peripheral.

Other times I hate it.

Most often I try to blend; which means biting my tongue, smiling politely and trying to think of a vague response when asked at a cocktail party how many children I have.

Sometimes I reach my point and have to use my voice.

Today is one of those days.

I can't get words from Wednesday's debate out of my head.

The descriptive 'rip the baby out of the womb at nine months' out of my head. And sadly, the repeated posts on facebook continue to haunt me.

I should unfriend, I should hide,  but thoughts about our own experience are eating my brain so, I will write.

Our son died in utero at 9 months. I remember the doctor searching for a heartbeat and clearing out the ultrasound room to confirm our worst thoughts.

I was given the choice of having a C-section or birthing a baby I would never hear cry.

I opt'd for the C-section. "Please just knock my out," I said

The doctor looked at me sadly, "We can do that but it's major surgery. You will have to stay in the hospital for at least 3 days to recover and it would be six months before we would recommend getting pregnant again. Your body will heal faster with a natural birth"

So, I was induced and waited through the night to have my son.

There was no ripping. Ripping would have been an easier choice.

All babies are born in the maternity ward- no matter the outcome. We heard lullabies played over the speakers when another child was born. My husband had to walk by congratulatory families in the hallway as he went to get a cup of coffee.

We left 24 hours later; greeted by a nursery that would not see a baby and a recommendation for a funeral home. My milk came in the next day and I sat in the shower and cried.

The only thing that was violently ripped out that day was my heart.

"But Heather," you say, "You did not abort your baby. Your situation was different."

And if you still hold onto that argument, you missed the point. This is how babies come into the world no matter the outcome, at nine months.

No one would choose to go through this because they want to.....because they 'changed their mind' about having a baby. When something goes wrong this late in a pregnancy, it goes very, very wrong.

So Stop- please stop using verbiage that sounds easy, dramatic, evil. The ones you are hurting are the ones who are already hurting.

Thursday, September 22, 2016

Show Up

It is Mitochondrial Awareness Week. 

And you know I and I know you.....are aware of your mitochondria every single day. 

It's tough to give insight just on this I thought, what about those who need a little insight? 

What would I tell someone whose loved one, whose friend, was new to this mitochondrial journey?"

So here is my top 5- please note, the collective 'we' is just my opinion on the mitochondrial community, the community may disagree at will :) No harm, no foul.

Anyway, Top 5: 

1. Show Up: 

Know that we might not show up back. 

Please don't take this personally, we are in the midst of a health crisis and we might not ever, ever acknowledge that you showed up but we know, and we remember. And we love that you showed up. 

When Jack died, A neighbor whom I had never met showed up with a chicken, a delicious roasted chicken. She cried as she dropped it off. I don't know her name but I will remember her sweet face forever. 

She showed up. 

Ring the bell and know that we might be home but just cant answer....perhaps because our child is seizing, or projectile pooping on the wall five feet away, or maybe they are doing none of these things but we just got two minutes of peace and have fallen asleep. 

Show Up

2. Show up with a good story: 

You are 30 minutes late to the hospital. Traffic was awful, your boss is pissed and you had a fight with your son. 

Leave it. Before you enter our hospital room (or house)  take a deep breath and know that whatever horrific crapiness happened today, it was probably better than what we went through. 

One of the very best hospital visits was by a friend who dropped off a meal and told us how he had fallen completely in love. It was awesome- there was not a problem in the world! 

Such great energy after a crappy day. Find a good story, dig deep if you have to but find something good to tell. 

**Caveat....if it is a great story about your healthy kiddo and you are going to visit a mito that story for later....maybe tell a story about a beautiful butterfly you saw in the atrium, even if you didn't....little white lies are awesome. 

3. Know that we will Change: 

Of course we will change! Everyone changes. And change is not always bad. The circumstances that brought us to this change are bad.....but respect the person we have had to become. 

That person is awesome, and tough as nails, and strong as hell and lippy.....respect is the operative word. 

4. Do Not Be Afraid: 

Okay, that one is kind of stupid, Because of course you are afraid. We are all afraid. 

Anyone dealing with mito is scared shitless. But don't be afraid of the person- the person is lovely and vulnerable and maybe just wants their feet rubbed. 

The very best people were the ones who just embraced Samantha for her smoochiness.....lines, oxygen, seizures and all. 

A friend and I once gave a very stinky Samantha a bath in the hospital. She was so sick and so stinky. And the way we worked to clear lines, tubes and wires was beautiful, all to bathe my child.....

I will remember that moment forever- just like the delicious chicken. 

5. Let us Cry, or Laugh, or be Horribly Inappropriate: 

We really do know that rectal Valium is outside the realms of what is polite dinner conversation. 

We know that when we have to explain to the nurse that the stain on hospital sheet is not really blood but Cabernet; that there might be issues. 

We tell you these stories not so that you feel bad or take pity on our life but because this is our life. Our amazing, terrifying life. A life we would have never, ever chosen but a life that the more we embrace, the more beautiful and scared it becomes. 

We know Mitochondrial Awareness week is overwhelming. Even the name Mitochondrial......sounds so formal. And the fact that there is no cure or therapeutic treatment makes the word Mitochondrial absolutely terrifying. 

A lot of friends will jump this crazy ship and I can't say I blame them but, in the words of some unknown author, 

"The World is Run by Those Who Show Up." 

I love that this quote is about showing up but we don't know who to credit the showing up to.....

Maybe that's the point about showing up, no one has to remember that you were there but you know, in your heart you know and that made a difference.

Show up. 

Monday, September 19, 2016

Our Most Vulnerable

Yesterday kicked off Mitochondrial Awareness week. 

I am a day behind in making you aware of the importance of your mitochondria. 

But if you know me and you know my blog, you know that mitochondrial function is pretty darn important. 

Love your mitochondria. 

Seriously, right now....take that thigh in your hand, give it a little wiggle and say "I love you little mitochondria, yes I do, yes I do, yes I do." 

Because sometimes you don't know what you got until it's gone. 

When we lose something, we feel so vulnerable. 

We feel it in the simple little things, where did I put my phone? Did I leave my wallet at the restaurant? 

And those suffering from this disease feel it in the ginormous things, I can no longer feel my feet, my baby cannot make eye contact, what the freakin hell has happened to our life? 

It is hard to be vulnerable. 

On Saturday, I volunteered at our Community Food Bank. I did it as a favor and grumbled through the day until I showed up to help serve the Saturday meal. 

If you have never done this, you should. It's kind of awesome. You are there to do the most primal of gracious FEED someone a MEAL. 

At 2:20 we started pulling out desserts, cupcakes and cookies from Krogers and Safeway that had expired. At one point an entire birthday cake was pulled from the freezer and sliced up. 

Meals on Wheels brought spaghetti and meat sauce for 50 at 2:30. Food was served at 3:00; so we started to heat things up. 

At 2:40, there was a knock on the door....a door which I happened to answer. 

"Can I come in?" 

I didn't was 2:40 and we don't start until I asked someone else...

"Can he come in?" I asked

"We serve at 3:00." 

"I'm sorry," I said, "We serve at 3:00." 

"I just want to sit. They usually let me come in and sit." 

Oh for pity's sake! 

"Yes, please.....please come in and sit." 

And so this man came in. 

And sat. 

And then got himself a big stinkin bear claw. 

As people filed in, some collected loaves of bread for later. Some coveted several desserts. One man went into the bread pantry and got a whole loaf of Safeway buttered garlic bread, sat at a table and shared slices with his friends. 

I have always wanted to dive head first into a loaf of Safeway buttered garlic bread.

I was a tad envious. 

We fed 65 people on Saturday. Not bad for our little town of  Loveland. Some were crazy gracious. Some wondered where the Parmesan the hell can you serve spaghetti without Parmesan???  

I have no idea

Some seemed in good shape, others not so much. 

Some came, ate and left, others stayed, roamed from table to table with a cup of coffee and a piece of leftover birthday cake. 

We ran out of spaghetti, had to reheat the meatloaf and finally onto the chicken ala king. 

 note; get to the community kitchen before the chicken ala king. I beg of you

The kitchen also gives out snack packs to those who ask. One man asked for a snack pack, "But make sure the drink is Capri Sun, none of that Kool-Aid Crap." 

I wholeheartedly agree

It sucks to be an outlier in our society. We talk tolerance, we talk diversity but to live as an outlier can be horrifically isolating; whether you are homeless, impoverished,'s not so fun to be on the bad end of the bell curve.

So on this week of mitochondrial awareness, I ask you to give us a seat at the table, let us in early, listen to our stories and feed us a bear claw.  We are a community shouting to be heard: grieving, under represented, searching desperately for a voice and so amazingly beautiful 

And in the words of the fabulous Berne' Brown....what makes you vulnerable makes you beautiful 

I leave you all a Kroger pastry and a world void of chicken ala king. 

Sunday, August 28, 2016

What the Heck are You Doing with My Money?

We are are 72 hours out from closing our 8th year as Summits for Samantha. 

That's right, in 72 hours I will stop my plea for donations to my ride and start my requests for RSVP's to our silent auction. 

I apologize now. 

It has been another banner year, our third year hitting six figures for the Mitochondrial Clinic in Colorado. 

"That is so super great, Heather." you say, "But this is my bazillionth year donating to your crazy ride. Um, what are you really doing with my money?" 

Well sit on down dear fundraiser......I'm going to tell you a story.....

This June I was at the United Mitochondrial Disease Foundation Symposium. I was stressed and worried. Our amazing president was at home with her son Jacob, he was far too sick for her to travel. I was worried about them all. 

And I was presenting for two hours on Grief and Resiliency. 

I love to talk. But two hours about Grief....holy schmoly. 

I sat at lunch with my mom and fellow Mito mom, Tina; reviewing my notes, trying to figure out how to make grief fun for two hours and eyeing the last piece of key lime pie. 

Our Mito Doc, Dr. V came up next to me. 

"I want to talk to you about the lab." He said. 

"Okay." I said in return. 

Because when a world renown Mito doc seeks you out at an International Mitochondrial conference to chat, you listen. 

I am not a world renown Mito doc. I was a mediocre English major and a really good ski bum. But I donned my very best thinking hat and listened as he told me what our ride was supporting. 

"We are in the very early stages of developing a method for the delivery of a functional protein to cells and subsequently to their mitochondria," He said,  "Our eventual goal is to be able to restore normal activity of a defective protein known to be responsible for the mitochondrial defect through the targeted delivery of the functional protein into the mitochondria." 

I listened so hard my eye balls hurt. Why, WHY didn't I pay more attention in biology. 

"But Samantha's deficiency wasn't in a protein," I  said. "It was in her gene, her POLG 1 gene." 

And this is where I love Dr. V., because he told me this story about our genes and our proteins.....that it is the job of the gene to tell the protein what to do. That the POLG1 makes a protein called polymerase gamma. Polymerase gamma plays a role in the process that converts food into energy that cells can use. 

CARS2, the gene mutation that Jacob had is also a protein coding gene known as Cysteinyl-TRNA Synthetase 2 and when having a mutation, also contributes to oxidative polyphosphorylation deficiency, or mitochondrial disease. In fact, Dr. V discovered the CARS2 gene as being another gene contributing to mitochondrial disease. 

Good lord. 

"So our genes are maps to tell the proteins what to do?" I asked Dr. V. 

He gave me the sweetest look a world renown Mitochondrial Doctor can when talking to an English major. 

"In a sense, yes." 


"We need a delivery mechanism." Dr V. said. "A way to get the cell to accept the protein. We need a peptide." 


And then Dr. V talked about amino acids bonding with peptides to create a delivery format for polymerase gamma or Cysteinyl-TRNA Synthetase 2, whatever the protein may be. 

"If we do this, will mitochondria function improve?" 

'That is our hope," he said. 

And then I swear....My thinking cap exploded....tiny little pieces into that slice of key lime pie. 

I went on through the day to present on Grief. 

I went on the next day to learn that we were losing Jacob. 

And I had a good cry about it all in the Seattle airport. 

Dr. V has always said he does not want to be named after a disease. He wanted to be named after a cure. That weekend was so hard and heartbreaking but one thing resonated......

We are doing such good work in the investment of this clinic. 

And this investment is so needed. 

So that, dear friend, is where you money is going. I hope you are as proud to give as I am to represent. 

You are making a difference. 

I have enclosed a photo of proteins being absorbed by monkey cells. Crazy, amazing stuff

Thursday, August 18, 2016

Own your dirtbagginess

This might come as a bit of a surprise....

But there were a few instances in my young adulthood where I was a bit of a dirtbag. 

Only a few. 

And just a tad :) 

So I am somewhat empathetic to those who find themselves making bad choices. My reaction is not a judgement but more of a 'oof.....that's going to hurt.' and 'this too shall pass' combo. 

But there comes a time when you just need to own your mistake. When you need to say to the world, 'That move I just made? That was a dirtbag move and I'm sorry. It's not really me, it's just a move. Please forgive my act of dirtbagginess.'

And the World, having experienced many dirtbag moments, is usually forgiving. 

But you gotta own it. 

It's when you sweep it under the rug that things get messy. Dirtbags tend to grow with lies. 

I was sad to hear that four Olympic swimmers were robbed at gun point. But I was floored when I heard that it was fabricated in order to hide a night of decisions that could have been better. 

Because most of us understand a night of bad decisions. 

Many of us have wee'd in a public place after too many Pisco Sours. 

My public wee'ing however has usually been outside of the convenience store, not inside next to the Funyuns. 

Reason number one is that consuming a bag of Funyons was going to be my next bad decision. 
Reason number two is that public urination is frowned upon in any circumstance, but particularly nasty inside a public place.  

But we probably would have turned an eye. It would have been a stink eye but we would have turned it. 

We would have been disappointed with the bathroom door and belligerent behavior but we still may have purchased the box of Wheaties with your face on it. 

Because Wheaties are delicious

Not really.

But the trifecta was to lie to the world. 

And to lie to Matt Lauer. Matt Lauer! Which is like telling your best friend's Dad you don't know who bought the beer for the party and threw up on the cat as you are hiding your fake id in your shoe. Alas, I can stomach many things.......

Many of us have had night. We have had to come to the table the next morning with our dirtbagginess and own it. 

We have not been in the spotlight that these four swimmers are in but ownership and apology go a long way and many of us respect that. 

I however have no respect for wee'ing next to the Funyons and then saying that your cousin did it. 

And ya'll know how I feel about Matt.