Love me a Scientist

Haaaaannnnnngggggg on readers!

Put the children to bed, pour yourself a glass, put your ego aside and hang on.

Mama’s on a rant.

I have tried. Really I have.

I wake up everyday, pull out the black yoga pants that are next up in roatation, pour myself a cup of coffee and sit at my computer.

I inhale. And exhale.

And say to myself “I will focus on what I can change, I will write my gratitudes, I will not engage on facebook, I will not engage on facebook.” And I sip my coffee, gaze out the window and say to myself “I am grateful. I am grateful. I am grateful.”

By 5:00 in the evening my zen has gone to hell in a handbasket. And while I am trying to focus on my joy, I have realized that writing it out gives me joy. So hang on. I’m about to verbally vomit all over you.

And since you are reading, you can grab a coveted Clorox wipe and clean it up.


I need a leader. I crave a leader. I listen to Fauci and Cuomo and think, “Just tell me something beautiful and intelligent, give me some facts, show me your power point. OH. That’s a nice graph. PPE? Yeah, I like PPE.”

I struggle and search because my President (yes, he is my President) well, he leaves me wanting a bit more.

And today he stopped funding the World Health Organization.

I pause.

For just a second. Think about it. He. Stopped. Funding. The. World. Health. Organization.

In the middle of a pandemic.

I will stop for a second and say…..this is not a political issue. Ya’ll know me to be a tad liberal but I get my Republicans. Hubs and I are DINKS with no children living on 20 acres. I get it.

But leave my scientists alone. Seriously.

If you know me you know how I love a scientist. Have you sat done with a researcher and talked about what they do? That brain is so enormous and they are so committed to change the world.

You get one bloody mary in our mito doc and he will go on and on about the importance of amino acid supplementation for our mito patients who have a mutation in any ‘ARS’ gene.

We sat over Samantha’s bed one night before we knew our diagnosis and he talked about the testing he was doing.

“If you figure this disease out, we could name it after you.” I said.

“I never want to be named for a disease,” he said. “I want to be named after a cure.”

These are the people we have decided to no longer fund.

Did I mention we are in the middle of a pandemic?

Have you been to a research lab? When this is over, I will take you to the mito lab at Anschutz. There is nothing fancy. Every corner is occupied. They mention every piece of lab equipment we funded.

The year the lab was about to close, our Mito doc came to me needing $30,000 to continue his research. We were able to fund the lab. That investment has blossomed into life changing research.

$30,000- life changing research.

Do you know that we have mapped the DNA of the Cornona Virus? That mapping will lead to a vaccination. Scientists did that. Lovely, beautiful, intelligent, passionate scientists.

We are not fighting another country yet somehow we have managed to fight each other.

We can continue to point and blame and fight and deny but that does nothing.

Perhaps instead we should support those who are fighting for a cure, our lives and a return back to normal.

I love you my scientists. I love your beautiful brains. Keep fighting the good, intelligent, statistically valid fight.


In Spite of Ourselves-

Years ago Hubs and I sat at the table after dinner. We shared a bottle of Cab and listened to Pandora.

John Prine and Iris DeMent sang ‘In Spite of Ourselves’; a gritty, no nonsense song about the silliness of loving another and loving that person in spite of our crazy flaws.

In spite of ourselves we’ll end up a-sittin’ on a rainbow
Against all odds, honey we’re the big door-prize
We’re gonna spite our noses right off of our faces
There won’t be nothin’ but big ol’ hearts dancin’ in our eyes

“Honey,” I said. “This is us. This is our song.”

He smiled and nodded.

This is our song.

I mean, don’t take it too literally- me and the Easter Bunny aren’t that alike but really, against all odds, honey we’re the big door prize.

John Prine left us this week. Another great human I never knew but attached my heart to. He was a great story teller, a fantastic musician and another casualty of COVID-19.

I love this song. Hubs and I have truly been against all odds. When I look at times now and where we have come; this marriage, no matter how wonky it is at times, is one of my greatest accomplishments.

He’s my baby, I don’t mean maybe
I’m never gonna let him go

I post this now because it’s easy to love when everything is hunky dory; the kids are at school, the job is great and that Disney cruise to the Bahamas is booked for May.

It can be a tad more challenging when everyone shares a living room table, jobs are on the line, the Disney cruise was cancelled and you have to help your kiddo find ‘X’ in Algebra.

Where is the HELL is X?

If X insists on be illusive, shouldn’t we just leave X alone? Where is X? Maybe X just doesn’t want to be found.

I digress.

These times. These times are a challenge. A challenge for us all. I hope at the end, you look at your person and know that this is your baby, don’t mean maybe.

And thank you John Prine; for your crazy love lyrics. You will be missed.

He’s got more balls than a big brass monkey
A whacked-out weirdo and a love bugged junkie
Sly as a fox crazy as a loon

Payday comes and he’s a-howlin’ at the moon
He’s my baby, I don’t mean maybe
I’m never gonna let him go


All The Feels

I am a crier. I have always been. I don’t shy from a good ol’ fashion ugly cry- the kind where you look in the mirror after, all puffy and shrunken and think, “Who stole my face?”

It’s a good thing I dont mind a cry. There have been days where I’ve wondered how many tear ducts I have and how much saline can one person produce.

I cry a lot.

Today was no exception. Last night I read that Charlotte Figi died from complications due to COVID-19. Charlotte was the ‘Charlotte’ behind Charlotte’s Web; a form of medical marijuana formulated to control epilepsy and intractable seizures. Charlotte had a devastating disease call Dravet’s Syndrome. She went from having 300 grand mal seizures a week to 3 a month while taking Charlotte’s Web.

Intractable seizures are hell. The brain has waged a war against itself and the entire nervous system. As Charlotte’s mother said, “You hold her and feel her seizing and wonder if this will be the last movement you feel from your child.”

The Figi family changed outcomes for so many families. They enabled us to ask our epileptologists the hard questions, “Why not CBD oil?” “Why not try this?”

They pushed the medical community and in turn enabled us desperate parents to push too.

Dr. Sanjay Gupta has written a beautiful tribute to this family:

We love these pioneers. Rather it’s fair of not, the special needs community attaches to these families; we watch and learn. They give us hope that someday we too can be pioneers; find that secret cure or a therapy.

I read the news last night and cried; cried for a family that fought so hard. And of course because it’s me, I posted my sad on Facebook.

“Are you okay?” A friend texted me.

“Oh. What? No, I’m fine.”


Well okay, I’m not fine.

I am struggling as I think many of us are right now. But as I stated in my last post, there is an undercurrent of grief in my life that I am familiar and comfortable with. I can talk about it because it really is a part of me.

We should be sad, shouldn’t we? 88,000 people have died since December- almost 15,000 in the US alone.

It is during these times I inhale

and breathe out a collective fffffuuuuuuucccccckkkkkkk.

I just did it. Try it. It feels awesome.

I’m going to do it again, even though this is a family blog


We are not broken if we are sad. Sadness does not mean we are depressed. Sadness does not mean we will never be happy again. Sadness holds no blame. Sadness just lets you feel the feels.

We have been raised to silo our emotions. People ask how we are and we reply with one word answers; good, fine, sad, mad, happy………But we are not one word humans. We are so much more than fine.

We can be sad but still be grateful for what we have. We can be mad but still love. Emotions are not either or. We are not an x/y equation that must be solved.

Our society doesn’t help with our emotional fluidness. Media is filled with either stories of great sorrow or great triumph; peppered with all of the reasons why we should try to do what we can to be happy and find joy. We have become emotionally schizophrenic- lead by what triggers a response, not by what we really feel.

You ready? Inhale deep and do it again…..fffffffffuuuuuuuuuccccccckkkkkkk.

Am I okay? I can only be the best barometer of who and how I am today and what feels right for me. How many tears? How many kleenex? Oh yeah, it was an okay day.

And sometimes, its okay not to be okay.

Love and light to the Figi Family. We hold your sadness too.

And love to my friend. Thank you friend.