Wednesday, September 19, 2018

Mito Awareness Week- Dreams


You may say I’m a Dreamer.

I had many dreams before mitochondrial disease. They were not extravagant. Or Outrageous. Sure, an Oscar nomination would have been lovely, or a Pulitzer prize, Olympic gold in the downhill….

I did have one, seemingly achievable dream.

I have always wanted to be a mom.

Many things in life are a mystery to me but I know I would have rocked motherhood. I have a collection of cheesy mom jokes, an endless supply of saliva to lick on a napkin and wipe on a forehead, and a series of Neil Diamond songs ready to be sung on cue.

My dreams are not extravagant.

And somehow they became impossible.

Its hard not to despise that POLG-1 mutation that took my babies. It’s hard not to hate the genetic makeup of who I am.

I could tell you it’s all for the best. That my babies were really sick. And you could tell me I’m full of shit and I would kiss you for your moxie and honesty. But it pains me to tell you my story- it pains me that my story makes you sad.
My burden of truth requires a donkey and an alpaca.

And despite the fact that alpaca’s are really cute, I don’t want to be sad and heartbreaking.

My brother, developed a foot drop ten years ago. Turns out he has the same POLG-1 mutation and now has a full-blown mitochondrial disease.

He also has mad mogul skills and has given me a passel of super fun nephews. His life is so very much more than what started as a foot drop. And he has dreams beyond.

We all had dreams before this asshole disease. This asshole disease now requires us to rethink our dreams or live a life a life thinking of what should have been.

I try not to should all over me. Should’s are messy, runny and they stain a good life.

I am fortunately surrounded by passionate non-shouldders who made me dream beyond this disease.

We CAN develop a community in this area.

And dream of a mitochondrial clinic in Colorado; our mitochondrial clinic that recently won an NIH grant to study the CARS deviation- Jacob’s genetic deviation. A clinic that received another large grant to study the efficacy of an MS drug and POL-G1 deviations

A clinic that hosts trial of a drug called Elamepretide. A drug whose sole responsibility is to smooth the membrane of the mitochondria to make exchange of energy from one cell to another easier.

A clinic that just became part of the Mitochondrial Network of Care- one of 22 sites in the country.

A clinic that was made sustainable because of a little bike team that recently raised $138,000 through the Courage Classic and a total of $775,000 in eight years.

I will never fight with my daughter. I will never tell her that her outfit is completely inappropriate. I will never braid her hair. Cheer a soccer goal. And alas, I will never smell the sweet scent of her darling baby head.

This asshole disease took that from me.

But you have let me dream again. You have let me be more. You have let us be more. And you have created hope. This is our life. We get one. Thank you for giving us hope.

You may say we are dreamers

But we’re not the only ones

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