October 2018 – Samsmom

Miracles… and a vortex

October 29, 2018June 29, 2019 Hschichie

Aw Loves:

Tonight I am caught between two universes- I am in a vortex. A Vortex of my own attitude.

Universe one: I am sad. I am angry. The ultimate shit show of violence and hatred this week has left me in tailspin.

But tailspins make me dizzy. I can’t tell up from down, left from right, right from wrong. I walk out from a tailspin angry, hair askew, throwing punches, shouting ‘what the F*#CK.

Me. Post tailspin with a schrunchie. Sidenote….name the movie 🙂

Tailspins suck.

I spent today with some amazing people strategizing about our nonprofit; for 2019 and beyond. We spent the day planning, dreaming, talking….it was amazing.

Our consultant opened the day up with a quote from Albert Einstein about miracles.

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is.”

And how great your life is if you think….if you live……that everything is a miracle…..

And it is really true, if you think about it life is a miracle.

That Earth supports life? Miracle

That our eyes see and comprehend the beauty of the sky? Miracle

That we love, think, feel…..these are all amazing parts of who we are.

And if we live our life moving among miracles, our life will be……miraculous.

So I went home and Googled Einstein’s quote about miracles and found sites stating that Einstein never quoted miracles.

Well what the hell.

What has the world come to if I can’t believe Albert?

And I felt like this.

And here is the thing.

Haters gonna hate, hate, hate. Albert talks about Miracles? Someone has to cut that down.

Don’t cut down your miracle. Don’t buy into the tailspin. Of who you are, what you believe. Trust the good. Be the good; in your words, your deeds, your relationships. Good. Miraculous. Love. That’s always better.

And you know what? I say this to remind myself. I love nothing more than flying off the handle. But that doesn’t do my miracles any good. And God. I love the miracles. I love the miracles more than the hate.

Be the miracle.

Life Today

A New Place

October 19, 2018June 29, 2019 Hschichie

I moved us.

And I’m sorry I didn’t warn you. I didn’t even pack us up. I left dirty dishes in the sink, underwear on the floor and the milk on the counter.

You can put the milk in the frig, it will be fine.

I have thought often about changing Samsmom. Modifying the front page, removing pictures of a sick Little and overwhelmed parents but that didn’t seem right either.

So here we are.

And here I am. A new blog. The same me. Wondering what lies ahead.

I have perused my old blog many times and I have to tell you; Samsmom Rocks.

Samsmom with a catheter in one hand, a keto- approved tube feed in another, operating on 2 hours and 13 minutes of sleep is a force to be reckoned with.

Samsmom is a badass.

Samsmom is now in the San Fran airport with a glass of Sav Blanc and a salad.

Nothing needs to be cath’d, or tube fed.

And I watch the planes.

Eight years later.

I’m not sure what this change means but I know I needed to write in a space that now feels like mine. Don’t get me wrong, this child that came into my life twelve years ago will always be my muse. She will always push me to be more, step beyond my comfort……explore and I will always be, until my dying day, Samsmom.

I just now have more options in customizing my wallpaper 🙂 And all of the old blog will slowly be archived here.

I Was Born in the Rain on the Pontchartain

October 5, 2018July 3, 2019 Hschichie

I found myself in San Antonio this week at the Mountain States Regional Genetic Conference.

I love Scientists.

I swear.

Thank you for being awesome and amazingly smart and wanting to change the world. I will continue to try and raise money for your efforts because I know you hate that part; ya’ll just continue to try and save us.

Science brought us newborn screening.

Did you know that 1 in 300 newborns have a genetic condition detectable through newborn screening? There are 31 newborn conditions, most states screen for 29. All of these conditions are treatable if identified early; some are fatal if not.

And time is NOT on your side. Successful cases had to do with an accessible lab, a committed medical team and an expedient relay of life saving information.

Diseases of the mitochondria are not part of the 31 BUT in 2012 Pulse Oximetry became part of the screen and they would have caught Sammers crazy O2 levels.

Who knows where we will be in six more years.

I heard many amazing stories the last couple of days. Amazing, life changing, my baby-is here-because-of this-science stories.

I love these stories.

But they are hard. I wanted us to be the life changing story. But we are not. So in the middle of all of these amazing stories, I have to remind myself not to be an asshole and pay attention and be grateful. Trust me, its better for all of us.

Day one was a long day.

Long days must be celebrated with margaritas on the River Walk. I sat next a lovely, slightly lippy Mom from New Orleans. We bonded immediately and decided we must be related in some way.

She talked about her Little and his diagnosis that was achieved through newborn screening.

‘He was born during Katrina,’ she said.

‘My God.’ I said. ‘He was born in the rain on the Pontchartrain.’

I realized what I said and that it could be taken as flippant.

‘No disrespect.’ I said, ‘I love that song. But oh my hell, you all are that family….in the hospital…. during the hurricane.’

Since we are certainly related in some way, she took no offense but we talked about these issues, when time is of the essence and great big freakin’ Katrina rears her ugly head. Or even when Katrina doesn’t rear her big head but when you live 300 miles from a lab, your baby is born on a Friday and the lab is closed over the weekend.

1 in 300 babies. Newborn screening is the most successful health initiative in the nation.

And it could still be better.

These last two days were amazing. As they always are when I’m with my people and can talk about our history freely.

Perhaps many of us were born in the rain on the Pontchartain

Underneath the Louisiana moon

Don’t mind the rain of a hurricane

They come around every June

High black water, the devils daughter

She’s hard, she’s cold and she’s mean

But nobody taught her, it takes a lot of water

To wash away New Orleans

– Band of Heathens