Life Today 2015 to Present

Where Everybody Knows Your Name

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.

blog, home, Life Today

If we were Vampires

Hubs and I spent the last week in Vermont and upstate New York with dear friends. A friends daughter was getting married and we were lucky enough to attend.

Situated in the Green Mountains lies the estate of Abraham Lincoln’s only child to live into adulthood; Robert Lincoln. The grounds are lovely; the peonies were just about to bloom and miles of green lush forest surrounded us.

The groom turned his back when the bridal procession started.  As his bride approached, winding gracefully through the gardens, he turned and looked at her and started to cry.

And so I cried.

I love love. Love is pretty stinkin’ awesome.

Hubs was lookin’ mighty fine in his tux. I was all spanxed up. We snapped a photo in the peonies.

“We’re looking older,” he said.

Sigh. We are. He took my hand and his fingers traced the back; age spots, veins and fingers that slip so easily into his hand.

We aren’t so old. But we are old enough now to know that this time is fleeting. Views are to be taken in. Hands are to be held. Good friends inhaled. Moments sipped until the glass is dry and the mind is tipsy with happiness.

We went on to visit another dear couple in New York. They have lived a lot of life with us. After dinner we sipped whiskey next to the fire. I had a Great Dane balanced in my lap as I listened to the rain. His tail thumped my leg when I stopped petting his ears.

We talked about the wedding and how love changes as life happens.

And then our friends played us this song.

And I cried again- grateful cry about the irony of life, good sipping whiskey, a groom and his bride, a dog on your lap and a hubs whose hand slips around my fingers.

If we were vampires and death was a joke
We’d go out on the sidewalk and smoke
And laugh at all the lovers and their plans
I wouldn’t feel the need to hold your hand
Maybe time running out is a gift
I’ll work hard ’til the end of my shift
And give you every second I can find
And hope it isn’t me who’s left behind