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 week.....so 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 kiddo...save 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 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. 





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." 

"WHY AREN'T WE DOING THIS???" I asked. 

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

"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. 







Tuesday, July 26, 2016

At a Loss

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.

 





At a Loss

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.

 





Monday, July 11, 2016

I love you the way I learned to ride a bike


This year I went a little crazy and ordered Summits for Samantha t-shirts. 

I have to say, I heart them. 

We have sage green and pink for the Ladies





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. 

Tuesday, June 28, 2016

Primal Howler Monkey



I have 50,000 emails in my google account.

You can judge. I am comfortable in my email hoarding.

I have 50,000 emails because they go back to when Samantha was born. They tell a sacred journey and I'm so afraid I will somehow delete a nugget of loveliness from my past. I filter through those emails every once in a while and find little gems. This week I found one from my dear friend Maria from 2009: 
Maria Hopfgarten 
9/11/09
https://mail.google.com/mail/u/0/images/cleardot.gif
https://mail.google.com/mail/u/0/images/cleardot.gif

https://mail.google.com/mail/u/0/images/cleardot.gif
to me

https://mail.google.com/mail/u/0/images/cleardot.gif

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 3rd 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?


Take care, and good luck to you and your little girl Samantha

I had no idea how this person would change my life. I had no idea how we would push and pull each other through heartbreaking times. 

I had no idea that a year later we would be without Samantha.

It is hard to be friends with grieving Heather. I can be moody, unresponsive and silently judgmental. But I cherish those who have stuck with me. 

Maria stuck with me. Together we formed Miracles for Mito and she is the amazing president of our organization.

Two Saturdays ago, Maria's Jacob decided it was time to go. 

I hate this disease.

And I hate that I know the journey. It’s like sitting with someone who is watching Silence of the Lambs for the first time and it’s my 78th time and I know what is coming up but I can’t warn them because it’s so awful and so unreal I can’t put it into words.

“Cover your eyes. No really, this part is pretty gruesome.”


I was at a Mitochondrial Conference presenting on Grief and Resiliency when we lost Jacob.

I’m not great at this concept of Resiliency this ability to withstand shock without permanent deformation or rupture (Websters).  I know I have been ruptured. 

I do not accept the learnings from my tragedy; I covet the tiny cheeks of others healthy babies, I use the ‘F’ word….often, I cry in a good Cabernet, and the fact that we’ve lost so many makes me so…..angry.  

According to Psychology Today; resilient people do not covet. 


Our fabulous Dr. E played the violin at Jacob’s service. She came over, gave me a hug and we cried together and then we hugged again, and cried some more. I didn’t want to let her go. Ever. She smelled of a lovely past….

Which I covet. 

When we lost Jack, a dear friend sent me the song ‘Grieve’ by Peter Gabriel.

It starts off as one of the saddest songs in the entire universe. I listened to it, laying in the middle of the living room floor thinking What the F*ck?? Thank God she also sent copious bars of chocolate; which I consumed in between my hiccup cries….

But this sad, sad song, turns more upbeat after a minute and focuses on the one thing we know true….

That life carries on.

It’s just the car that we ride in
A home we reside in
The face that we hide in
The way we are tied in
And life carries on and on and on and on
Life carries on and on and on

I rode my bike on Sunday with this song in my head, Jacob and his Mama on my brain and climbed to the words……

The face that we hide in
The way we are tied in

On and on and on and on.

To my friend- howl at the moon, howl unabashedly, channel your inner Primal Howler Monkey, nothing has to be civilized; not right now. Know you are truly, deeply fiercely loved. Know that six years into my journey, I still covet the life we had in the email above.

Sigh, so very, very unresilient. 


And know Sugar, if on those days where you don’t have anything to say to this world, come sit by me and we will howl together. 

Tuesday, May 10, 2016

Challenge

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."