Category: Life Today 2015 to Present

blog, home, Life Today, Life Today 2015 to Present

Do You Hear the People Sing?

Hschichie

It’s Friday evening.

I’m always hesitant to post on Friday. It reveals the fact that I’m not out at a hip bar drinking appletini’s but instead sitting in my study contemplating the meaning of life.

Alas, I am a tad nerdy.

But also tonight mind and body demand a little downtime. A little time to think about how amazing the last week has been and everything we have accomplished.

Last weekend our Summit for Samantha team of 61 riders rode over 130 miles and raised almost $130,000 for mitochondrial research here in Colorado. In our ten years as a tenacious team, we have raised a cumulative $893,000 for our mito clinic.

Next year I’m calling a million. A million dollars for mitochondrial disease.

I would be lying if I said this week doesn’t knock me on my hiney. I have gone radio silent on my team. It took me three days to unload my car. I am now staring at a pile of stinky rider gear in my study.

Stinky.

But my goodness, its awesome. And my goodness, I am so proud of what every, single, person has done to raise this team up into the ten year success it is. We are number 5 in overall fundraising for the ride; number five with teams raising awareness for cancer research, heart defects and overall hospital support. These are known, important causes that are easy to rally behind because the general population knows about them. Here we are, number five for mitochondrial disease. Mito-what-drial?

This is not an easy ride. Vail Pass after 60 miles of riding is brutal; your head plays games and your legs plead for you to stop. I turned on my Pandora about two miles from the top. The station queue’d was Hamilton but a song from Les Miserables was playing…..

Do you hear the people sing?
Singing the songs of angry men?
It is the music of the people
Who will not be slaves again!
When the beating of your heart
Echoes the beating of the drums
There is a life about to start
When tomorrow comes!

I pushed along to the cadence but thinking to myself, I’m not angry.

But then my other self called bullshit on that and declared I clearly had too many shot blocks.

Of course there are times when I’m angry. When we should not have to raise money for mitochondrial disease. When I should not know so many who have lost their Littles.

And when I realized that, climbing up Vail Pass, the beating of my heart echoed the beating of the drums…..

And I started to cry.

Two miles from the top of Vail Pass on your bike is a really awful place to cry. I told myself this but myself does not listen and started to cry harder; snot, sweat and tears.

This year we arranged for a beer stop at the top of Vail Pass because, well, beer. My friend Paula coordinated the stop, rallied volunteers and dressed as a giant banana to keep us going.

No really. A banana.

As I got to the top, I was greeted by my team chanting “Heather! Heather! Heather!” I was handed a cold Summer Shandy, a Kleenex and felt the relief that all I had to do was ride down into Copper.

How can I possibly be angry?

You all make it IMPOSSIBLE for me to be angry.

And not that it does not well up at times. And not that I don’t ugly cry at times. But I’ll tell ya, 61 riders, $130,000, a Summer Shandy and a dancing banana…..ya’ll are good people.

Thank you for another amazing year.

Life Today 2015 to Present

June 30

Hschichie

Sigh.

Today just cannot pass without talking about it. I feel it in my energy. I feel it in the way Hubs and I move around each other. We are sad. Today should be different but it’s not.

I hesitate posting about Jack. I never heard him cry, never knew the color of his eyes, but I knew him. And I love him. And he demands his day.

Fourteen years

That’s a lot of life.

And yet the timing of that day passes through me every year……..the minute I sat in the waiting room, the second I found out, the moment I called Hubs.

I hesitate to post about Jack because it is so very sad. Nothing is more devastating than a silent delivery room.

Tomorrow we will toast to our First. I will place the frog ring on the creme’ brulee. The waiter will ask what we are celebrating and we will awkwardly look at each other and come up with a lame answer.

But to tonight I will miss a person who should have been here.

Life Today 2015 to Present

Where Everybody Knows Your Name

Hschichie

United flight 403 is taking me back to Colorado. Back to real life; back to a place where distinctions of phenotype and genotype are not topics of debate, back to where no one really talks about the phenomenon of allelic hetrogeneity.

I am ready to be home. I am also grateful for these four hours, 30,000 feet above the ground. I need this time in the clouds to process the week.

We are a rare community; a community that carries deviations shared by only thousands (or hundreds) in the world, a community that must explain themselves daily, a community that feels ignored and is oftentimes misunderstood. For three days in the garden level of the Hilton however, we are not so rare. We are not the minority. We can discuss our genetic anomalies to a table that shares similar mutations.

This is not a hard week for me. This is a week where I can talk about our journey, our daughter and hypsarrhythmia without sad eyes. I can share stories. “The ketogenic diet work for you? It worked for us too!” 

We are surrounded by amazing specialists who work tirelessly for this cause.; intelligent, thoughtful caregivers. We honored one of our Mito Specialists at the dinner last night, Dr. Bruce Cohen. As we all stood in applause I started to cry. This is an awful disease that steals dreams, breaks families but I felt so grateful to be in this room.

Our very own Dr. Van Hove came up to me and gave me hug.

“Thank you so much Johan for all you have done for our family.”

He looked right back and me. “Thank you for supporting what we do for these families. I would not be here without the work you and Maria are doing.”

I put that moment in my pocket and will take it out anytime I feel misunderstood in this journey.

I’ve been a mushy grateful, reflective tub of goo for the last 24 hours. United flight 403 is taking me home. I sit somewhere between earth and sky. I think I might stay here a little while.