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 acts…..to 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 know…..it was 2:40 and we don’t start until 3:00….so 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 was….how 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, disabled…..it’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. 

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. 

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. 

You should sit down. 

Are you sitting? 

This weekend I found myself at a loss for words. 

Nothing….to…say.

In fact I feel that the English language has completely failed me. This is ironic because I am an English major and I have recently become completely obsessed with Words with Friends. And I LOVE to talk.

But sometimes there are no words. 

There are no words when you look out at a group of people who have ridden 120+ miles for your cause. 

There are no words for a group that has given thousands of dollars for an obscure disease with no cure.

Thank you doesn’t seem to cut it. 

Gratitude seems trite. 

MY GOD YOU ARE SO AWESOME I COULD JUST SMOTHER YOU WITH SLOBBERY KISSES. Seems awkward. 

This weekend was life. In its beauty. In its sadness. In its loss. In its hope and in its love. It was all wrapped up over two days, 3 mountain passes and 6,000 feet in elevation. 

“It was the hardest thing I have ever done.” said one rider. 

Maria likened this ride to what Jacob went through every day. 

I just thought it was hard. And amazing. And what is the word for that? Hamazing? 

Yes, it was Hamazing. 

As us riders rode, our incredible group at the house prepped a total of 150lbs of smoked yumminess from Texas, a vat of potato salad and endless pans of macaroni and cheese. 

YUMazing. 


On Saturday evening I stood in front of this group. My heart felt so full it could float out of my chest. And there was nothing I could say that would do this feeling justice. 

So I cried. 

Six years ago yesterday we lost our Miss to this awful disease.

I had no words then. 

Yesterday I drove down from Copper; tired, joyful sad, and so overwhelmingly grateful. 

And I have no words now. 

Perhaps my emotions cannot be contained by Webster’s. It cannot be defined or explained. 

But I am in awe of all of you and what you have done this weekend. 

Thank you.

 

And gray and green for the Gents. 

But my favorite is the back. I love this quote by Rudy Francisco. 

The Men’s shirts showed up today and I held one up for Hubs. 

“What do you think?” I asked

“I don’t get the quote.” 

“You don’t get it?” 

“I don’t get it.” 

“Don’t you remember learning how to ride a bike and you were so scared and the bike wobbled and you were all like whoa………do I have this? I don’t think I have this. And you were so afraid that you would fall and you did fall and it hurt but you got back up?” 

“I don’t remember this,” he said. 

“Well you should!” 

And then I went on my tangent… 

“My first bike was a Schwinn and she was rainbow colored and she had a yellow banana seat and I named her Rainbow, which wasn’t very original but I was six. And I LOVED her! And Rainbow and I would ride in the middle of the road and do figure eights and I would pretend she was a pony. One day I got honked at- which was rude.”

I paused.

“I wonder where Rainbow is now.” 

Hubs continued to look at me.

So I went on…….

“But being in love is kind of like this. You could fall, you could get horrifically banged up, you WILL fall but you have to be reckless- you have to trust the bike.” 

And I went on.

“AND loving someone whole-heartedly? Someone who is sick? Someone who you know will leave this life before you? How reckless and scary is that? But you do it anyway, because you can’t help yourself. Because it is love. And that’s what this ride is about- for all of these families; for us, it is reckless, and scary and love.” 

“Don’t you love these shirts?” 

He looked at me and paused, “I love these shirts.” 

I tossed Hubs a large. 

Reckless.

And Scary

And love. 

Maria Hopfgarten	9/11/09
to me

Hi Heather,My name is Maria Hopfgarten, and I came across your blog as I read your article in the PASCO newsletter. I LOVE your blog, and your story so reminds me of my journey with my son Jacob. I also love that you bike! I don’t get out on the road, but I do use my spinning bike in the basement for mental strength:-Jacob is 3,5 years old, and has an unspecified mitochondrial disorder. I can see from your blog that Dr. E is also following your little girl. We don’t know what we would do without her.My son is in the hospital tonight again with a bacterial infection of some sort (waiting for the 48 hours blood culture), the 3^rd admission in 4 weeks. We feel Children’s is our second home.You can read my son’s story at: www.caringbridge.org/visit/jacobhallbergIf you camp out at Children’s, let me know, and maybe we can meet for a coffee one day?

I like to challenge myself.

You name it……

Hot dog eating contests

Pie eating…..

Wine shots….

Half Ironmen I’m not quite….. ready….. for…..

And Grief. 

Sunday was Mother’s Day which is the MOTHER of ALL DAYS for those who have lost.

But I took it. I took the Mother’s Day Challenge. I made a decision to embrace the idea of Mother’s Day….to not be hatin’, to be out there, fully, me and Mother’s Day.  

And to smile. 

There was some thought behind it. I love my friends who are Moms, I loved being a mom and I love my mom. So there you have it. 

HAHA! Here I am…..Take that Mother’s Day! 








This isn’t me. 

This isn’t even two Moms. 

This is Tenzing Norgay and Sir Edmund Hilary after summitting Mt. Everest. 

But hey, my grief is a mountain and this is a journey….they look happy….and by God, I will take this Mother’s Day Challenge. 

I even told my friend Maria on Friday. 

“Mother’s Day will not get me down this year!” 

“Ah Yah.” She said with her skeptical Swedish grin. Why do the Swedish do that grin so well??? 

“Heather, it is okay, you know. You do not have to like this day.” 

“I do Maria. I can.” 

“Yes but if you change your mind, it is okay. And we love you” 

And with that she tossed me a delicious Swedish Fish and left the building

Alas, another Mother’s Day Challenge. 

And so, So……I bought….I purchased cards with vigor, Mother’s Day tissue paper and gift bags. 

And I cooked. I made a mean potato salad with a lovely dill dressing. A baby green with buffalo mozzarella and fresh basil; champagne dressing.

And of course, a crisp Prosecco to wash it all down. 

I did this with a Tenzing Norgay smile. And I stood on top of my Everest……with potato salad in hand!!!!!!

And got a migraine. 

Not Just A Migraine. 

The Mother F*ckers of Migraines. The ‘Oh My HELL my head should no longer be a part of my BODY migraines. The cluster of aura, numbness, headache migraine. The migraines that hurt so bad you throw up….because nothing wants to be in your body at that time.

You can’t fight city hall. 

You can’t always fight the grief

And apparently Mother’s Day is ALL WRAPPED UP with City Hall and bedfellows with the grief. 

I met a friend at work on Monday. 

“How was your Mother’s Day?” She said.

“I got a piecing migraine and spent the day whimpering in my penguin pj’s. How was yours? ” 

“I got food poisoning and almost pooped my pants next to the hummus and carrots at King Soopers.” 

“Good Times?” 

“Good Times.” 

A friend of mine is losing his battle with cancer.

This crappy disease has spread, the chemo has been halted and the doctors have declared it incurable.

Well shit.

I hate this news. 

I met my friend….I shall call him George…..23 years ago in Germany and it’s been a while since I saw him last but he’s one of those people you just remember. He is kind, welcoming, sarcastic, funny and enjoys a good Pils; typical Brit.

He also skis, sails and uses the F word a lot. I adore beer drinking, sarcastic, skiing, cursing Brits……we became fast friends.

We reconnected on Facebook a couple years ago and now here we are.

And I hate that he is losing this battle.

But I love his honesty. His this-is-it-mother-fu*cker honesty. And I know George has fought hard.

He posted on Facebook this week that his fight was coming to an end. 

My facebook reply wanted to say ‘Oh HELL no Georgie Boy! You got this! Keep fighting! Never give up!

My facebook reply wanted to send him links of people who were on their death bed, who bounded back, who drank three gallons of Matcha Kumbacha and went on to climb Mount Everest.

George! Did you drink the Matcha Kumbacha? DRINK THE MATCHA KUMBACHA!!!!!

Last year I sat with another friend as she battled terminal cancer. It was a life changing, lovely, horrific, beautiful honor to be by her side. I also got to see what it was like to have a disease ravage your body. It is not pretty- it has no mercy. This amazing flesh and bone that serves us so well turns against; lungs fill with fluid instead of air, cells consume other cells, everything we trusted about our bodies proves to be false. 

Cancer is ugly. 

Last year when I left the hospital, I turned to my friend and said, “I will see you in a couple days.”

She smiled and said, “I’m not so sure.” 

She knew. And maybe the best thing I could do was honor her wisdom, no matter how hard it was for both of us. 

And so I did not tell my friend to keep fighting the good fight. I did not tell him what else to do.

Sometimes there is no solution. Sometimes all we can do is sit. We don’t have to say it will be okay, we don’t have to offer a solution. 

And you know what? IT IS REALLY FREAKIN’ HARD. It is to honor where someone is, right now, in their grief and anger. I am not good at it…..at all. I am the queen of let’s find a fix. THERE MUST BE A FIX! 

When Samantha passed, there were times that I didn’t want to be told I would be okay, I didn’t want to be told she was an angel in heaven, No one could fix where I had to be, they could just be with me. 

Just be.

Just be. 

George, I will not tell you to drink the Matcha Kumbacha. I will not remind you of it’s healing qualities. I will not tell you to be positive. 

I will tell you this sucks donkey butt. I will tell you many people in many places love you. And I will tell you that I know it is not enough. 

Scheisse. 

I know…..

It’s been a while. 

And I’ve thought of you often. 

But Winter brings a bear-like hibernation to me along with wooly socks. 

I do love me some wooly socks. 

But now I’m back and posting about…..

Wait for it….

Just a second longer….

Grief! 

Yet again. 

My dad called today and we had a nice chat; the weather, skiing, my knee, my nephews….the conversation got a little stale and he was ready to go. 

“Okay,” he said, “Anything else?” 

“I went to a grief group last night.” 

“Oh God,” he said. 

“I know! I know! I know!” I said. “But you would be so proud, I only dropped a couple F-bombs and they weren’t in regards to the speaker! And guess what? I was called a seasoned griever.” 

“What does that mean?” 

“Apparently it’s someone who has been grieving for a really, really long time.” 

“Huh” 

And so we chatted for a bit longer- mainly about the times he has accompanied me to grief groups that have been outrageously sad. 

Which is fitting because these are grief groups for parents who have lost children. And at times they are indeed, outrageously sad. 

Ironically I don’t go to be sad. 

I go to search. And I have not found what I am looking for. 

I search for grief process that resonates with me. 

Something I can follow, believe in, trust in. 

Something I can be true to and something that is true to me.

As a seasoned griever, I feel I should have found this. 

And yet there are still days I wear my grief like a hair sweater. 

Sounds itchy. 

Makes me squirmy. 

Yesterday’s session was about finding Whispers of Love- Signs are Kiddos are still with us. Which I do believe in. Samalou gives me little signs everyday. 

Right now she is telling me not to be an a-hole about other people’s grieving process. 

But this session seemed forced to me. And after slide 20 of a cloud that looked like a heart, I drifted a little. 

And then pulled myself back in and thought, how does this relate to me and my process?

It did a little, but not enough to embrace, to fully get behind or make me feel any more sure of my own journey. 

Which leaves me feeling a bit disappointed and thinking, No not this, this is not the answer.

I do know I cannot force it…..and I am really good at forcing things. 

You got a round peg that needs to fit in a square hole? Send it my way.

Maybe I will never find it- my own Creed on how to move through the world with my newly seasoned loss. 

Maybe it is tiny- tiny breath, tiny gesture, simple beauty and pink sunrises. 

Huh…..maybe somedays I might be doing it. 

Somedays. 

I have decided to give this body part that has given me so many issues a name. Hence, I would like to introduce you to my right knee, Nedwina. 

Neddie for short. 

Neds when I feeling gracious. 

I think it’s a good name for when I need a little more somethin’ out of my knee. 

Come on Neds….give me another five.

And then Neds can promptly tell me to go to hell. 

Because it’s really not her fault she’s in this state. I’ve put her through a lot. And she has stepped up to the plate. Good knee. 

Hubs and I sat with the Ortho surgeon as he went through the geography of my knee. 

“See here? That’s some arthritis and the wear here? Oh, that doesn’t look good. And what’s going on over here? Huh. How old are you again???”

I am paying the Piper for my twenties. But just to be clear, my twenties were quite a lot of fun. 

And so it was decided after much debate that we would cut into ol’ Neds, clean her up and call it good.

The surgeon met Hubs while I was in recovery. 

“Your Wife? Your wife is waaaaayyyyy too young to have a knee so old.” 

And then……THEN they discussed my knee without me to defend why she looked that way. 

They went into the areas of decreased cartilage, potential bone on bone, craggy arthritis, and some crazy piece of something that what just floating around. And just how long I should hold out for a knee replacement. 

Hubs met me in recovery. 

“You’re a mess,” he said. 

“It took you this long?” 

“The doctor says you should no longer run.” 

“Never? Never, Ever?” I said. “I can no longer run???”

“You hate to run.” 

“I love to run.” 

“Really?”

“No, I hate it. But I hate people telling me what I can’t do more.” 

And so we discussed what the doctor said, bone on bone, knee replacement, blah, blah, blah. 

Never let an engineer be the first point of reference for not-so-good news because they take it seriously. Really, who takes doctor’s advice that seriously??

Engineers, that’s who. 

“Oh pshwah,” I said. “I’m sure it not that bad.” 

Seven weeks later Neds is still pissed. I’ve told her it’s time to step up and be the knee she was meant to be and the makes her even more pissy. 

And so I took her skiing. 

To be fair, skiing is waaaay easier that walking. And in the words of my doc “Well you really can’t do anymore damage.” 

And in the words of Hubs, “No doctor should ever tell you that. The typical patient fine. You? Not so much.” 

Sadly others in the family agree. 

Getting old is a bitch. But as I place an ice pack atop poor swollen Neddie, I give her a little pat and say, “Come on, it was worth it wasn’t it?” 

And although she tells me exactly where I can go, I think deep down inside she thinks it was worth it too. 

Don’t ya Neds?