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.

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