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?????


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