Category: Life Today

The Kids are Alright

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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!

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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 🙂

Dodie’s china, tarnished silver and love

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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

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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.

3 Tips to Grieving Parents Surviving the Holidays

On By HschichieIn home, Life Today2 Comments

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.

Gotta Do More. Gotta Be More.

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I love that my life is surrounded by others making a difference. Seriously, it lifts me up everyday.

Who am I today? What is my best day?

Somedays I bring it. Other days, not so much.

When I was a senior in high school I saw the Dead Poets Society, like 199 times. I loved it. I wrote down quotes, I journaled…and this scene still hits me

Chaos screaming, chaos dreaming, gotta do more, gotta be more.

Guinness Book of World Records announced another record today; a dad who ran the fastest marathon dressed as a battery. Blaine Penny ran a stinkin’ marathon in under three hours to raise awareness for Mitochondrial disease. His son Evan was impacted at four and is now non-verbal and wheelchair bound.

battery

https://onthego.to/guinness-world-record-run-in-a-battery-costume-for-mitochondrial-disease/?fbclid=IwAR3RHAfID2Ht-YRfKCdUqscR-YOgSS9KPVLBJoP0AlJJI8S3a1dWjeJzBWo

I love this speedy battery Dad.

I dont know speedy battery Dad but I’m willing to bet he still goes to bed thinking gotta do more, gotta be more.

Cause that’s the kind of person speedy battery dad is.

I am finishing day 8 of 30 days of gratitude and it has been amazing for me. It validates what my life is in this world but also reinforces a purpose. What is my very best life? Still searching for answers on that but the more I focus on what is working, the less what does not work matters.

Funny.

Gotta do more. Gotta be more.

Thank you Speedy Battery Dad.

 

 

Miracles… and a vortex

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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.

heathers

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.

einstien

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.

 

 

 

 

A New Place

On By HschichieIn Life Today6 Comments

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.

More from me soon.

 

I Was Born in the Rain on the Pontchartain

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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

 

A Little Light :) By Angela

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What a great way to end our week. Thank you Angela!
A Little Light

There have been so many topics I have considered writing about during this Mitochondria Awareness Week, then out of the blue on a busy evening here at our little farm came a call or should I say missed call.  Now when you receive a phone call from your son’s Mito specialist from his cell phone after clinic hours a million things race through your mind and not many of them are good.  So, when I hear the voicemail to please call back as soon as possible I got butterflies in my stomach.  Not the good kind when you are excited or giddy.  The kind when your nerves are on high alert and you kind of want to just throw up. Unfortunately, when you are a mito parent you know this feeling.  There have been many times when I have been nauseous with anticipation of what a doctor, specialist, or therapist was about to say. I have literally never had an afterhours call that has been positive.

                I immediately called back and was welcomed by some positive and exciting news!  So, our amazing Mito team at Children’s hospital has been working on some treatment with blood and getting really promising results.  They are trying to get a grant to further their research and need two patients’ blood to treat and submit the results.  Our Dr was calling to see if we would be willing to donate Cal’s blood because they thought they would have a great chance to show positive results with Calvin’s in particular.

                Yes, I know it’s not a cure or even a treatment but it is a little light.  This disease can be very dark and there are many lows so when you get a light you take it.  It may seem very minor to most people but mito parents hold on to the little lights and moments of positivity.  We can all appreciate the small movement of progress and hope for a snowball effect, for the science to some day take off like wildfire.

                When you are told when your child is about two years old that you should take him home and love him as it is not real likely he will live past three years old.  We were also told by doctors we’re very sorry but there was not treatment and it was not foreseen that would ever be.  Now during the Mitochondria Awareness Week there is light and hope!  Calvin has already been involved in one FDA trial for a medication for mito and now his blood will help continue research toward more treatment.  So love what your mitochondria do for you and we will continue to love and celebrate the progress and hard work that our team of doctors does for Calvin’s mitochondria.