Monday, October 2, 2017

Embrace your people

My senior year in high school I dated a young man who was searching for his identity.

In the meantime he introduced me to great morose music. The Smiths, Morrissey, Kate Bush....Kate Bush and Peter Gabriel.

https://www.youtube.com/watch?v=dduZbDFCG_E


In times of uncertainty, I go back to this music

In this proud land we grew up strong
We were wanted all along
I was taught to fight taught to win
I never knew I could fail

This week I have been tasked with taking black and white pictures and posting them on Facebook. I took this today while waiting at a red light.


These are Samantha's pink shoes. They sit on my dashboard of my car. I like the crack in the windshield along with the rain, along with the pink shoes. The dichotomy of life.

My girl who is no longer with me but with me everyday- perched next to the crack in the windshield.  

I watched in disbelief today and cried. I hate who we are sometimes.

I don't know why we do what we do.

But I have met enough people along my path, heard enough stories in my life to know that there are bad people in this world.

And nothing will change that. Bad people will find a way to be bad.

And that is outstandingly shitty because most of us are not bad. Sure, we all have moments of assiness but 99.99% of us cannot fathom what the bad people do.

And this evil rocks our world

Because it should.

Where do we go from here?

Grab your people. Hold them tight. Look in the eyes, kiss on the lips. Tell your loves you love them.

All we have each other. Which sounds trite- it is not skin or bone but it is connection. At times it is pink mary janes on a dashboard.

It is who we are; our stories, our vulnerability, our ability to relate, embrace, love, laugh, connect.

It sounds like nothing when so much has been taken. But sometimes when all has been taken, it is so much.

And at times it is all we have.









Tuesday, September 19, 2017

What Mito Took

This week is Mitochondrial Awareness week.

Which is funny because if you know me, you know about your mitochondria.

But I truly wish you didn't know.

My loss hits sometimes.

I was in a college town on Saturday. It was a weekend for high school seniors to tour the campus. The hotel lobby was full of anxious, potential new students and overprotective parents. I got into the elevator with a mom and her daughter. The daughter held a bear shaped travel pillow in one hand and her mom's hand in the other. She sighed deeply and put her head on her mom's shoulder. Her mom instinctively turned and kissed her daughters head.

I, ironically was going back upstairs to work and held a glass of wine in my hand. I took a sip and examined the buttons on the elevator.

They got off on the fourth floor and continued to hold hands.

The ease of this intimacy between mother and child....I miss....I will covet for the rest of my life.

Mito took that piece of my life and dared me to find a different one.

It took many pieces.  

It sat across from me with irksome eyes, returned my life after loss on a platter; steaming, stinking, painful, unidentifiable and goaded me to find a new purpose.

And so I dug through the mess and tended to what was salvageable. It took a lot of digging, a lot of scrubbing and searching.....searching through the shit for what was good.

Eventually, I constructed my new life.

It is piecemealed together, fragile, continually searching and changing to find what makes it complete but it is a life in spite of all that Mito tried took.

I am broken. My new life presents me snarky, impatient, unpredictable and horrifically judgmental.

This morning I watched Madonna being interviewed by CBS this morning. She is doing great work in Malawi, Africa. Good, commendable work. But she said she is doing it because she is the embodiment of whatever doesn't kill you makes you stronger.

I spit my tooth paste out and said Bullshit to the TV.

I have become the woman who yells at the TV.

At Madonna.

In this new life I have met many beautiful, humble embodiments of strength. They do not tell you they are strong. They pick through the remnants of the old life, polish, scrub and redefine.

Mito takes. It takes strength, energy, power and our Loves. It returns us as voyeurs in an elevator daring us to continue on. Challenging us to find our life again.

It takes a lot. And it takes a lot to not allow this disease to take everything.

The antonym to take is to give. And perhaps that is how I must right size all the taking; to combat it with giving. Not because giving is the altruistic thing to do; that part is the icing on the cake. But because the giving stands up to the taking and I need some soldiers in my court or at the very least in my elevator.

Happy Mitochondrial awareness week.









Monday, September 4, 2017

Hope is the Dream of the Waking Man

This is a quote I found on 'the google'. It's a French proverb and I like it.
 
Because what are we if we do not have hope? In the flooded streets of Houston, in the incomprehensible situation unfolding in the Pacific, in the stressful realities of our special needs community, we all need hope.
 
On Thursday we officially finished up another year of riding with the Courage Classic and fundraising for our Mitochondrial Clinic. It was another amazing year.
 
As we finished nine years of riding and six years of funding the Mito Clinic, certain things are starting to happen; really good things. Ideas and projects that only start to come to fruition after years of consistent fundraising and establishing ourselves as a partner in the mito community.
 
And as we finish up another year, I am in awe of a group of people can do.
 
No matter how small.
 
For all of you following, donating, riding, volunteering and supporting us. This is what you have done this year:
 
1. This year Children’s Colorado became a site for an international clinical trial for those with mitochondrial myopathies. We are one of 50 sites internationally. You can access the trial info here: http://www.stealthbt.com/clinical/.


It's a reason to smile :)
 
2. The protocols used by the clinic have  been approved by the Institutional Review Board (IRB) for Mitochondrial Disease. These are all super big words but what it means is that Colorado will become an international hub for research in this field. Our goal moving forward is to establish Children’s Colorado as a Mitochondrial Center of Excellence. This means more research money and support will be funneled into our state.
 
 
One reason why Jim does all of this :)
 
3. Dr. Austin Larson joined us as a fellow in 2014 and is staying on as an Attendee focused on Mitochondrial research, treatment and clinical testing at Children's Hospital . Dr. Larson spoke and met with families this year at the United Mitochondrial Disease conference- we are very excited to have him on board and representing Colorado
 
Cal is THRILLED about this
 
4. We have sponsored a grant between Dr. Larson and Dr. Green to fund a research project looking at the link between mitochondrial deviations and type one diabetes
 
 
Makes Maria smile (Joakim too :)  
 
5. We also supply families in the Rocky Mountain region with supplements not covered by insurance through the Metabolic Food Store at Children’s
 
 
One reason why this beautiful group rides
 
6. We continue to fund the research lab at CU
 
 
 

Six items for our six years. Not too bad.

This team has kept Mito research in Colorado.

This team is what will help continue that research.

I started with a Hope. You all supported a dream. And we kept it a dream in our state. And we continue to support our local families.

You keep me awake.

During the ride, I climbed up Battle Mountain with John Denver in my head, the mountains around me and the lack oxygen in my lungs.

I cry every time I hear Rocky Mountain High. 

And yes, I do realize this might be a character flaw.

I stopped, took in the beauty, wiped my eyes. And thanked God, the universe, my tribe, Samantha and this crazy life for bringing this all into fruition.

And I so leave you with the first verse.

He was born in the summer of his 27th year
Coming home to a place he'd never been before
He left yesterday behind him, you might say he was born again
You might say he found a key for every door


Thank you for helping me find my key :)

Sunday, August 20, 2017

Last week I spoke at a resiliency conference at Children's.

I love the topic of resiliency. What makes people able to face a crisis and turn it around for something good? What is that wiring in our brain and how do we emulate everyday?

I tell my colleagues at work that our issues are not arms and legs and that no one will bleed out.....our marketing campaigns will be okay in the face of a challenge. They will live to see another day.

But Friday's conference was given for the hospital caregivers. What do I say to a group of caregivers who do face challenges where it could be arms and legs??? Where someone really could bleed out? How do I tell them to be resilient without sounding trite?

As usual, my talk was from the hip....nothing prepared. I was going rouge.

I opened with my Chicken Soup for the Soul story; the one about grieving and recovery. This story kills me. It was written and submitted before we lost Samantha. I received word on its acceptance a week after she died. It has taken seven years for me to like this story again.

I read this and think, "oh you poor Mama, to talk of grief with your Sweet Babu by your side. You ain't seen nothing yet."

I read this story to my audience with that caveat and that seven years later it is finally relatable. The very cruel thing about grief is that it takes time. It just takes time.

Our talk went onto my Google search for traits of resilient people. Based on The Google, resilient people are almost perfect:

- They are mindful and self aware
- They do not covet what other have
- They look at their hardships as a lesson in life
- They are always learning

 and they take good care of themselves.

I find this a load of hooey. My favorite resilient people are lippy and raw. They speak to their pain with truth and honesty around a glass of wine and deep fried cheesy poofs.

mmmmm cheesy poofs.

And I told this to my group.

Shootin' from the hip.

Sometimes all we can do to be resilient is to remember to brush our teeth and put on underwear.

I told this to the audience and they laughed.

I appreciated this for two reasons (1) Because I went to give my talk right after a comedian which I feel is amazingly unfair and (2) because if you a laughing with me, you are relating.

Stories of resiliency can be hard and difficult to relate to....they inspire us but at the same time make the audience think, "thank god that wasn't me."

According to The Google, unless we have experienced incredible loss, turned that loss it into joy and are now making hemp underwear to help orphans and practice mindful mediation three hours a day, we are not resilient.

Resilient people are so because they wake up everyday choosing to be.

It was fun to speak to this group. I left the day with bath salts, lavender hand cream and my underwear.

Resilient.

And happy eclipse! When I look up tomorrow at the sun (with my protective eyewear) I will take a moment and appreciate how very vast this life can be.

Monday, August 14, 2017

Feet

Sometimes you are so busy doing the things you want to blog about, you have no time to blog about them.

Combine that with the fact that I am a horribly undisciplined writer.

And I have a slight Facebook addiction.

This equates to four months since my last blog post. Which is okay. But I really do like to write. My head needs to be purged at times and when I don't write I become a bit of an emotional hoarder with thoughts gathering dust in my head like old newspapers.

So here I am.

Four months later.

It's hard to summarize four months in one post so I won't. This is my welcome back to my blog post....you have many of my 'what I did this summer' posts to come.

When I think of the last four months and all that has happened; the Courage Classic, the Mitochondrial conference, swimming from Alcatraz, our house remodel, work, family, friends, it is good....solid. This is a good spot.

But I had to take the time to recognize that my life is solid. What is my connection to this world? Where are my feet? What is the earth they stand on?

I sometimes forget.
 
I meant to post yesterday but this weekend felt like emotional dodge ball......so much sad news with little time to process. It's hard to know how solid your feet are when you're on your toes.

Last night I told my husband, "I need to write more."

"So write," he said.

Hmmmm. Yes.

But first I had to find my feet, feel the earth and remember my connection.

And perhaps a pedicure.

Sunday, April 23, 2017

Vision with action can change the world.

My Dear Friend Heather (not me......really although I do find myself a good friend to myself)

I digress.

Anyway, my dear friend Heather is taking a course on leadership. She told me my leadership strength is vision.

I love her for saying this because so often I cannot see my path.

And then somedays the path is in front of me, so incredibly clear it was painted with neon pink glitter glue.

A month ago I was working from home during a nondescript Friday afternoon when I got an email from our brilliant Mitochondrial Doc.

The subject line was Progress.

This took me aback and begged to be read because sometimes issues of the mitochondria and progress do not go hand in hand.

His email told me that because of the money raised through Summits for Samantha, we have been able to achieve the following:

1. Securing our Fabulous Mitochondrial Fellow at Children's Hospital- he is now an Attending Doc with us.

2. Securing a Clinical Trial for Adult Mitochondrial Myopathy at Children's

3. A mitochondrial treatment protocol at Children's Hospital, including a protocol for genetic testing and muscle biopsies. Along with this comes a guarantee from our grassroots bike team that we will fund the protocol. YIKES.

Our Center here in Colorado is making a mark internationally.

I read his email at the dining room table.

This picture also lives in the dining room

My eyes darted from the computer her picture and I proceeded to sob.

Ugly sob...ugly heaving sob.

Because we are doing.

We are doing.

The path that day was aglow with love and trust and a vision.

So what do when you are ugly sobbing?

You call your Hubs.

Who doesn't answer.

And so you leave a message that goes like this....

"Hey, I know I sound upset but I'm really not. I'm so happy (gasp, hiccup), really.....because this is what we have done."

And he calls back and says, "what's wrong?"

And I reply, "I am overwhelmed with gratitude."

This is all because of a team with a big heart who decided this vision was okay. And raised a crazy amount of money for this vision.

Sometimes this crazy world falls into a perfect harmony.

Friday evening Hubs was (again) greeted by a gratefully hysterical wife at the door......

Because I got a letter stating that you people, you crazy gracious people have given sooooooo much in Samantha's name to Children's, that she will have her name on the Wall of Remembrance.

I never had a headstone or plot for my kiddos. Kinda because I never in a bazillion years thought that this would be my life. And kinda because my kiddos are with me every day- in every butterfly or pink sunrise, they are here.

But now she lives on in a place that helped us when no one else would. That makes me (yet again) ugly cry happy.

And you! You crazy people. Thank you for believing in our mission and vision. I cannot believe how fortunate I am to have such amazing people in my life.

Now what's next?????


Thursday, March 23, 2017

I didn't post

Two years ago a dear friend died from breast cancer.

I didn't post anything when she passed.

I was so sad and nothing seemed to be in a good place.

I didn't post that after my friends' second night in the ICU, her four daughters and I spent the night at the Marriott Courtyard by the hospital. We sang to 'All About the Base', swam in our boxer shorts, ate a bag of chocolate covered pretzels and ordered the Rooty Tooty Fresh and Fruity with extra bacon from IHOP.

We were a Motley Crew crammed into my Malibu Max. A Mama who had lost her Littles and four Littles who could loose their Mama.

We drove back to the hospital and 'All about the Base' came on again.

We danced in that Malibu Maxx like we didn't have to go back to the hospital.

I looked back at these four girls with a very sick mama and wanted nothing more than for them to be okay, to know that they were loved, to trust that no matter what lies ahead when they walked through the doors of the hospital, that a whole community stood behind them and that they could always, ALWAYS order an extra side of bacon.

I don't know if I ever fully expressed that to them.

We lost one of these precious girls this week. It was shocking and tragic and I honestly do think my heart has a slow bleed right now.

I will miss her.

The world will miss all of the potential that was in this lovely, amazing young woman.

Sometimes the Rooty Tooty Fresh and Fruity just isn't enough.











Monday, March 20, 2017

Fluent

This week has continued the poop-tastic theme of 2017.

I really do wish I were posting anything other than attending another funeral but I am not. And while there are really great things going on, this is taking all of my brain space and it must be expelled.

Please remind me after this post that I did promise to write about the great things. The great things must be written about.

Enough of this grief crap.

I wrote on Facebook this week that the worst thing about fighting for this disease is knowing what everyone is going through; loss, fear, anger, grief over a disease that tends to take everything. It is isolating and heartbreaking.

Robert Devine was born one week before Samantha with a mitochondrial disease. He and Samantha were in the same Anchor Center class. He fought so hard for his ten years and his parents were relentless in his fight.

I sat in a pew today between Maria and Jacob's nurse, Gemma as we said goodbye to Robert. We held hands and cried as the bagpiper played Amazing Grace.

I do not feel Amazing.

I did not feel Graceful.

I did feel a bit like a Wretch.

But I also did not feel alone.

We all stood together as we have so many times when confronted with these awful circumstances.

We all speak the same language- the language of grief.

It is not anything you ever want to be fluent in; or even well-versed for that matter. It is a heartbreaking language to learn and it will change the way you view the world forever. Those fluent become extraordinarily honest and find they are no longer versed in the opposite language- the language of bullshit. Small talk can also be difficult once fluent in Grief.

It can be hard to find others who speak Grief. But once found, there is an instant connection; a sad but relieved connection. "Thank God I am not alone."

I left today sad, exhausted but full of love and amazing respect for these families. I also found that after a morning of speaking Grief, I had no more room for any other language; other conversations were hard and my brain was distracted. Everything else in the world seemed trite.

It breaks my heart that this group of those who speak Grief has grown....this pisses my off. As Anger and Grief sometimes share the same vocabulary, I guess this is expected.

Ironically, I have also found that tolerance and acceptance can also be synonymous with this language. I guess it depends on what thesaurus you use.....or the time of day.

I find the time of day to be more predictable.

Most important, finding others is imperative to navigating this painful, foreign tongue. Unlike my high school Spanish, the language of Grief doesn't go away if you don't use it.

Stupid Grief.

Grateful for those who speak my language .....which is poop-tastic that you speak it too but know I am grateful you will hold my snotty Kleenex hand and refuse to talk small.