How Very Grateful

I have just finished Girl Wash Your Face by Rachel Hollis. And I recommend. It’s an easy read, a funny book and I keep quoting her.

She talks about the lies we tell ourselves. The lies we believe and repeat to ourselves. And repeat. And repeat. And repeat.

As a grieving Mama, I thought ‘what lie do I tell myself?’

‘I should be beyond my grief.’

‘I should be beyond my grief.’

‘I should be beyond my grief.’

Truth is I am no. Heck no. Nope. No sireeee.

And when I believe my lie, my real feelings fester and my voice is subdued. Sometimes my voice is all I have and fester is such an ugly word.

This weekend, a dear friend sent me this gift; the video below with the wish that Samantha would have been in the Super Power Baby Book.

I sat in a coffee shop with non-lie alligator tears streaming down my face embracing my Christmas blend. Vulnerable, raw, honest.

Thank you dear friend for helping me live in my truth.

Watch here.

May the Gratitude in My Heart Kiss All the Universe- Hafiz, Sufi Poet

Loves.

Loves,  loves, loves.

Yesterday was Colorado Gives Day, a chance to give to our local nonprofits.

And Lordy you gave!

You sponsored a top family grant

Help with respite

30 bottles of ubiquinol shipped from Montana to New Mexico

Gas Cards

30 stays at the hotel across from Children’s so tired families can be close to their loves.

Gift cards that can be collected at the hospital for a much needed cup of coffee

Scholarships to national mitochondrial conferences

And a support group to families when life seems unsupportable

I KISS THE UNIVERSE in my gratitude! You are love. And I love your love.

thank you text on black and brown board
Photo by rawpixel.com on Pexels.com

Two Days Until Colorado Gives Day!

Did you know?

If you are a mito patient at Children’s Colorado, you can mosey on down to the volunteer office and ask for a gift card?

And they will hand you that gift card.

And you can use it for whatever you please.

Be it a Green Goddess Salad over at Panera.

Or the French Toast at the cafeteria (which is really pretty good)

Or some fancy lotion and some cozy socks.

Or COFFEE at Daz Bog!

No matter.

All because of Miracles for Mito.

Yeah, we got your back.

The Kids are Alright

I have been looking through quotes to find the right words.

I have looked through George H.W Bush’s repertoire to state how I feel. RIP 41.

And I found the quote about broccoli. But I like broccoli.

And then as I started to write this post, Hubs put on The Who and the song The Kids are Alright came on.

The Kids are Alright. And that is it.

ethan santa

Miracles for Mito hosted a Christmas Party today. It was a great day! We were at the Anchor Center for Blind Children which is an amazing place. Samantha was a student there and everytime we host a party, I feel a tad nostalgic. My nephews joined us today. They ran up and gave me a hug.

“Isn’t this a cool place?” I said. “Samantha went to school here.”

“She was so lucky! She had a ball pit!” Said one of the Phews.

And that got me all teary.

But the Kids are Alright.

nat and santa

Today every kiddo got a present. We had amazing food compliments of Angela and Matt. Our docs talked about what we are doing here in Colorado. And really, we are doing some cool things

austin pic

Here is our doc talking about current research. I love this community.

I MAY have been related to Santa and Mrs. Claus today. Jim, my stepdad stepped up to be Santa and he was amazing. Mama Judi was Mrs. Claus. We talked about being Santa last week.

“You got this,” I said to Jim. “Just be Samantha’s Santa.”

And he was. He went up to every kiddo in a wheelchair who could not come to him. He talked to them, held their hand….Missy Moo was proud.

And The Kids are Alright

kiddos santa

It is hard to put into words……this devastating disease, this strapped community, our own  personal grief……and come out on the other side with hope, love and and overwhelming sense of gratitude.

But thats how today was. My heart is so full. You all are amazing. And if we have nothing else, I guess we have each other, and tonight? That is enough.

This Kid is Alright

Thank you. Seriously. Thank you

 

 

 

 

Five Days Before Colorado Gives Day!

Yesterday the world came together in a philanthropic effort for Giving Tuesday! It was impressive and heartwarming to see all of these amazing organizations.

And alas, Miracles for Mito was silent on this day.

Do you know why?

We are saving all of our donation moxie for Colorado Gives Day; only five short days away!!!!

Since are nonprofit was born in Colorado, serves the Rocky Mountain region and supports research at the University of Colorado, Colorado Gives Day seems appropriate.

For the next FIVE DAYS, I will post how our grassroots org has made an impact in this state we love.

Here is day Number 1!

DO YOU KNOW that many mito patients are told to take a very pure form of COQ10 called Ubiquinol as a therapeutic remedy?

A bottle of Ubiquinol is $125.00 out of pocket.

Miracles for Mito delivers Ubiquinol free of charge to our Mito families.

Your donation helps our families receive this supplement.

So hey, thanks! That’s pretty nice of you 🙂

I Love My Mitochondria

Lordy I do.

I do, do, do-do-y do.

None of us would be here without these tiny, beautiful organelles.

Like any love affair it is peppered with imperfections, loss, heart ache, curses, and the occasional throwing of a dinner plate across the dining room.

Regardless. At the end of the day. I love my mitochondria.

I love them so very much me and my favorite people made a t-shirt to proclaim our love.

I love this t-shirt.

I love my mito shirt

Here is what I love most about this messaging. Mitochondria are complicated, mitochondrial diseases are terrifying, if I hadn’t been forced to know about my mitochondria, I wouldn’t know about my mitochondria.

But now I know. And now I love them and I want the rest of the world to know them and love them too.

So hence my shirt. Which can be your shirt too! Send me an email and we can get you all set up.

Second best thing about this shirt? It makes you look really smart. Like crazy scientist smart. And for someone who got a D in chemistry junior year, I love to look scientist smart.

Here’s me and researcher in Toronto. He stopped me wearing last years shirt, “Hey, I love my mitochondria, are you a scientist?”

scientist

“Well of course! What other nerd would be wearing an I love my mitochondria shirt?”

No, alas, I cannot lie. I am merely a paramour of my mitochondria.

But keep working smart devoted researcher. Keep working on these complex forces of energy…..I’ll keep talking about how super important they are.

Love.

Your.

Mitochondria.

And get a shirt too!

 

 

Dodie’s china, tarnished silver and love

Lordy. Today was a good day. We hosted 24 people. The table clothes were wrinkled, the glassware didn’t match and the silver needed a good polish.

I didn’t polish the silver. In fact I only found the silver last night in a desperate attempt to find more forks. We still have some unpacking to do.

Nevertheless, two beautiful turkeys and an impressive ham made its way into our bellies along with a little grape and a lot of laughter. My grandfather at 91 and my nephew at 2 1/2 adorned the table along with the rest of us, all between the spectrum of youngest to oldest.

family

This is what life is isn’t? These moments around a meal; a piece of pie, breaking bread, pulling out my grandma Dodie’s china, toasting the beauty of being together.

Perhaps that is what creating a legacy is about. Tiny moments that weave into bigger stories. The comfort of being surrounded by unconditional love and mashed potatoes.

Happy Thanksgiving sweet friends.

3 Tips to Grieving Parents Surviving the Holidays

Hey Loves! Our Mito Memories group is talking about surviving the holidays on Sunday. I thought I would post my own guide.

3 Tips….maybe more but this sounded like a good place to start.

1- This is Yours

Believe this and covet this. What I am about to tell you is a horrible truth but I think if you know this, it helps. Are you ready?

This journey is yours.

No one knows the crazy-ass painful extent of your grief. They don’t, they cannot. They may think they understand and yes, they may be in your court and want to support you but Honey, Sweet Love, this pain is yours to carry.

And I’m sorry for that.

I tell you this because your family and friends may be super supportive. They may be there for loves, and hugs and kisses and they want you to be happy. My goodness! They want nothing for you to be happy.

But sometimes in this journey, you cannot, you physically, mentally cannot be happy.

That is okay.

Protect your right to be sad.

Guard this right for yourself and for your family. I had many people ask what was wrong with Hubs and was he doing okay. I said, ‘yeah he’s alright.’ When I should have said holy schmoly no! He is not alright! He is f8cking sad! Let him be sad!

Allow yourself to be sad. If you get too sad, allow yourself to find help. Help is awesome. Truly. I love sitting with someone who will listen and nod with me for an hour.

Validation is fabulous.

2- Find your muse

My outlet is to write.

Do you sing? Paint? Build? Knit? Draw? Photograph? Clean? Cook? Find you thing and think of your Love when you do it.

I have no outlet you may say. And to that I say you do. Dig deep, find it. Cook for the homeless, downward dog your ass off, glue-gun sesame seeds to bowls, glitter the walls…..

Find a place where you can find peace in your head.

3- Think of your Love

Honor that sweet little pickle. Honor that Love in your own sacred way, make that honor yours and yours alone. For me, this space is my very own lovely, guarded scared space, it is filled with songs that bring tears to my eyes, sunrises that take my breath away, a pair of Samantha’s shoes and a stuffed lion that ride in my car.

I love and kiss them all.

What’s crazy is that when I try to explain my sacred space to others: when a song comes on that reminds me of my girl….

Lumineers…..

Lovely girl wont you stay, wont you stay, stay with me

All my life I was blind. I was blind, now I see……

Something is watered down by my explanation to others and then I almost regret bringing that person into my sacred space.

Because this is my song, for my girl.  Lovely girl

So Loves. Find your space this season. Guard it with the intimacy of your love, your pain, the complexity of the shitiness you have been dealt. Make a list of three things that will make this season successful, make that success dependent on no one else but you.

You can do this. You can honor your Love and survive the holidays. Honor who you are, honor your sadness, honor your sacred space. Nothing else matters. Scalloped potatoes can kiss my hiney.

Farts are Funny

If you spend an extended amount of time with me, one thing will become glaringly obvious.

I am a child.

Seriously.

I can bring my game when I need to; fold my napkin in my lap, use the correct fork, sip my tea, clap appropriately……but to know me is to know that underneath it all I am an inappropriate hot mess.

And I fart.

Sometimes.

Tonight I am rolling off of a girls weekend filled with Neil Diamond cover bands, deep conversations, not-so-deep conversations, wine, cheese, chocolate and too little sleep. Those weekends are good. And needed.

If you haven’t had one in a while call your girlfriends up now. Call them! It doesn’t have to be a fancy weekend, or expensive weekend, book a night at the Holiday Inn, grab a bucket of chicken, a cheap bottle of wine, and talk in your comfy pajamas.

We don’t talk anymore. We do, we text, we post.

Talk.

Truth reveals itself over talk.

And chicken wings.

I spent a weekend in close quarters with my besties; eating chicken wings and brie, drinking chardonnay and pruning in the hot tub. Ironically, I during this time I forget how to sip my tea. I don’t care which fork is correct. And neither do my friends; which is a good thing.

Because day two of chicken wings and chardonnay leads to gastro distress. Distress that you can’t blame on the dog because no one brought a dog. Distress that when it’s quiet at 7:30 in the morning and your besties hear you toot from the bathroom, it is followed by five minutes of belly laugh.

Farts are funny. Finding friends that share in your seventh grade boy humor is priceless. Go gather your gassy gals and settle down for a weekend.

And chicken wings are still delicious.

 

 

I Was Born in the Rain on the Pontchartain

 

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