I have a beautiful songwriter, singer, poet friend named Inda Eaton.

Inda has been on my mind the last couple days…….perhaps because yesterday was her birthday, perhaps because when I’m stuck in my life, one of her songs plays in my head.

It’s called a Prayer for Jo….take second to listen and then tell her how much you love it.

https://play.google.com/music/listen?u=0#/album/B7jflpfgqbaolqqj7endczrtkea/Inda+Eaton/Why+the+Desert

Scroll down to Prayer for Jo…..or listen to the whole album. Ya’ll might have a little extra time 🙂 The music is raw and the lyrics resonate when the world doesn’t seem to make sense………

Now where was God. When the chips came down?

Because all our dreams, they’ve been turned around.

In my mind I need a rest, from the nightmare days.

It could have been anyone, it could have been anywhere, feels like the heat from the Honduran Sun

When this songs comes to my head and I’m a little angry, I change the words chips to shit, because that’s just how I roll, potty mouth and all……

Where was God, when the shit came down? Because all my dreams, they’ve been turned around.

Go ahead, sing it. And change the words. You deserve it this week

So many things have changed- so many dreams been turned around; graduations, weddings, trips, school. People are sad, disappointed, scared and some are angry; looking for something, someone to blame.

In my mind I need a rest. From the nightmare day.

Here’s the rat bastard thing about life……sometimes there is no one to blame. Sometimes things just happen. Sometimes we have to except that we might not have any control over the big overarching issue.

Not having anyone to blame is the worst. It’s so much easier when we can stick our knowing, blaming finger in someone else’s piece of pie.

But this is life; in all of its lovely, unpredictable, heartbreaking amazing glory. This is life.

There were many times in my life when I have asked where was God…..especially when the chips where coming down.

And I have come to this conclusion; God is not what happens to us. God is how we respond to what happens to us.

May we respond with grace. May we respond fearlessly, responsibly and without blame……that is where God is when the chips come down.

I remember a hospital stay with Samantha. She had a temp of 102. She could not hold her oxygen. Her lungs were junky so we consistently had to take a tube that was attached to a suction machine, stick it up her nose and suck yellow glop out of her sinus’ into a canister attached.

Note to reader…… Are you eating? I hope you’re not eating…..

Cough. Go ahead right now. Give yourself a good cough. Make sure you cough into your elbow and wash your hands after- because, well COVID-19. But after you do that, think about all of the muscles it took to cough.

You inhale, deeply. Inhale into your strong, capable lungs. Your diaphragm tenses up, perhaps along with your abdominal muscles. Your throat muscles close your glottis while chest muscles exert pressure. Your glottis opens back up and expels whatever ick seems to be residing in your chest cavity.

Whew! That was a lot. Now imagine living in a body with a compromised diaphragm. With a respiratory system that cannot force air out properly so all of that ick pools back into your beautiful lungs, perhaps damaging your tiny, precious alveoli.

I remember wrestling with Samantha and the suction machine; neither was cooperating. The doctor came in and said, “Your daughter has the Rhinovirus!”

“Oh my God,” I said. “Not the Rhinovirus. What do we do? This is horrible!” I then paused, turned off the suction machine and said, “What is the Rhinovirus?”

“It’s a common head cold.” He pointed to his nose. “Rhino? Nose?”

I looked around at tubes and the machines.

“All of this for a head cold?”

“Well, yes. When your body cannot expel the nastiness collecting in your lungs, all of this for a head cold.”

“What can we do?”

“Nothing, its a virus. Lets get her stable and her fever down. We can send you home with a suction machine.”

I learned how to suction like no one has ever suctioned before, well, except for my friend Maria, she could suction her son Jacob with a skill and finesse that really was quite impressive. In fact, all of my mito moms can suction their Loves with ease. Because being able to cough is a big deal and not being able to cough is an even bigger deal.

The common cold became my Corona.

And now, ten years later, I read the current news updates. Tonight I cancelled an event with friends. I do not condemn medical professionals for what they are doing nor do I think we are over reacting.

I do think the toilet paper thing is odd. But that’s another topic.

Here is what I do know. Our medical system is taxed on a good day. Don’t believe me? Go sit in an ER during flu season. Hang out in an ER room for 36 hours because there are no rooms available inpatient. Wait. Because there is nothing else you can do.

We have a medical system designed to get patients in and out of hospital beds as quickly as possible. Empty beds mean money wasted- want to cut costs? Remove beds. And so our system has done so.

This is not a criticism of our system, it’s just fact.

And for you, healthy, beautiful person with strong abs and a functioning glottis, this is no big deal. You might get sick. You might not. It might suck. It might not. Regardless, I hope I never, ever have to suction you.

But think about every single person you come in contact with today and what they might go home to.

Health is our most precious gift. More precious than the stock market. More precious than that Spring Break trip. Be so very grateful for the lovely, functioning coughing body you have.

And in that gratitude, please be respectful and aware of those who do not.

And Wash. Your. Hands.

What does it mean to be Rare?

We have one extra day in February this year! One more day to be with your family. One more day to catch up on that list that keeps nagging you. Another day just to be.

And a day to rally around Rare Disease Day! Rare Disease Day falls on the last day of February; this year a leap day, making the day even more special.

Ironically, us rare folks aren’t so very rare. 1 in 20 of us will be diagnosed with a rare disease in our lifetime. But when you have a genetic mutation shared by 1 in 400,000 in the world, you can feel pretty alone.

One voice in 400,000 is not very loud. But one voice in twenty can create quite a ruckus. Rare Disease Day focuses on that ruckus, focusing on the 300 MM of us with a Rare Disease diagnosis or affiliation to that disease. We represent 6,000 identified diseases. 72% of these diseases are genetic and 70% of these diseases start in childhood.

Rare is defined when 1 in 2,000 are impacted.

Mitochondrial Disease is a rare disease. We will be sounding our YOPP in the next couple weeks- letting the world know that we are not so rare.

What does our YOPP entail?

The rare disease community has several asks and many of them focus around access to scientific knowledge and quality information. Misdiagnosis or delays in diagnosis are life limiting. Since so many of these diseases are identified in childhood, pediatricians need to know when to refer families for genetic testing or to a specialist that can manage complex medical care.

Better counseling and access to newborn screening. Newborn screening saves lives! It is one of our greatest medical advancements. We need to talk to families about this process not in the context of fear, that something could be wrong with their beautiful baby but around good pediatric, preventative care.

I will be in DC the week of February 24^th– talking about my family and the families we represent. I am so very honored to do so. Rare can be terrifying. It’s good to know we are not alone.

Ten years is a long time.

If we’re lucky we get 8 or 9 (10?) decades in the precious world. Decades are defined in history; we talk about the 1960’s, the 70’s in chunks of events that forms our world today.

How will our tween and teen years define us?

I thought about this today as Hubs and I drove home from the mountains. What have the last ten years been for me.

In spite of the amazing things that envelope my life today, two words immediately popped into my head.

I fought.

Well, yeah. I guess I kind of did.

In this long span of ten years, I fought for my child, I fought to define a life without my child and without the prospect of additional children. I fought to find myself, to redefine myself, my marriage, my relationship with Hubs and my relationship within this world.

In the span of ten years, I am grateful that I no longer have to fight to keep my head above water but I cannot dismiss the times of frantically treading.

It is true that time heals wounds. It is a horrible truth especially in this society where we expect instant gratification; one day delivery, a pill to make things better, a ‘like’ to verify our worth. Time knows nothing of these things. Time makes us wait, feel, and then poof, hands us ten years of life wrapped up in a messy, beautiful package.

A decade is a long time.

I saddled up this past decade, handed it it’s hat, looked it straight in the eye and said, “You were kind of a bitch.”

It winked at me and rode off into the sunset.

After any great fight, there is reflection.

In the words of our great muse, Rocky Balboa, “It ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward.”

Amen Rocky.

Amen.

Onto our 20’s!

I know this much is true: I feel grateful every, single day for all of you in my life. I am grateful for this life; no matter how hard it has been at times; I am truly grateful.

I am grateful my lungs take in air, my heart pumps my blood and those things allow me to be a person on this earth. Somedays I forget to be grateful of these facts, other days, something amazing happens allowing my gratitude to be compounded by 1,000.

I love the compounded by 1,000 days. Those days when the elements of my life come together in an amazing gratitude vortex ; I walk around with a silly grin on my face.

I am so stinkin’ lucky be alive.

Those days are my elixir, a tonic for harder days.

Happily, as I get older, the compounded by 1,000 days show up more often. Perhaps I search for them more, perhaps the nuances of my life allow me to see them a bit more clearly.

Last summer, I rafted the Grand Canyon with my Hubs’ family. This was not my first trip down the Colorado.  15 years prior, I rafted half the river and hiked out of Bright Angel with my mom, stepdad and brother.

It’s hard not to fall in love with that area. The beauty is raw, untouched and dangerous. Canyon walls touch the sky exposing billion of years of our earth’s evolution. One floats through 75 miles of canyonland, small, realizing how fleeting life can be.

My brother fell in love with that Canyon, like he does with all wild lands. I think he was a bear in his past life.

Last summer I was looking forward to my trip but like everything gets in the way. I landed from a business trip the night before we left, packed in a rush and monitored my business email as we drove towards Utah.

My brother wrote me an email:

“Sis, don’t forget to explore the Little Colorado, stop at Elves Chasm and hang on at Lava Rapids! Look up! Look down! Have a great time. I loved the Canyon!”

I read this and got tears in my eyes. My brother bear can no longer do this trip because mitochondrial disease is a sick, selfish ass.

“Stop,” I told myself as I was frantically trying to answer another work email.

“Look.”

“Remember this time.”

“Be in this life.”

And so I left my phone in car and jumped in a raft.

The River Crew! I am the shortest person in the group!

The first night I woke up to an amazing roar. It was the Colorado, charging down the canyon. I looked up to a cascade of stars framed against the black of the canyon walls. The Milky Way actually looked Milky! There were so many shooting stars, I ran out of wishes. I laid in my sleeping bag feeling infinitely small against this amazing universe.

And I started to cry.

Hubs woke up. “Are you okay?”

“It’s so beautiful. It is so beautiful. We’re so lucky to be here.”

He patted my leg.

“I am just so grateful for this life. To be here, in the Grand Canyon. With you.”  

Sooooooo schmaltzy, right??? But so true. There are not enough words in this language to explain the overwhelming sense of love and appreciation I had for that moment. That moment that is my life.

I am so stinkin’ lucky to be alive

Loss has made me appreciate what is left. When what is left is nurtured, fed and loved, it grows into its own beauty. The beauty will never be what was anticipated, the beauty will always house the loss. But it is beautiful, unexpected and rare in its very own way.

Look around at your table tomorrow; the beauty of a meal, being fed, surrounded by Loves, or maybe surrounded by Likes, make a Like a Love.

And think for a quick moment, I am so stinkin’ lucky just so lucky to be alive.

Happy Thanksgiving!

I love pretty things.

I do.

As a little girl, I loved dressing up. I loved make-up. Playing with my Grandma Dodie’s lipstick. When I was three my Papa and Dodie bought me a new dress with pink ruffled undies. They took me out to dinner. I ordered a Shirley Temple and proceed to show off those amazing pink undies.

I tapped around that restaurant in my patent leather shoes like I owned the place.

I still love patent leather shoes. Because they are sooooo shiney.

I wore a tiara in my hair when I got married. I loved it so much I wore it the next day to brunch.

Because I could.

I love pretty. I have battled with pretty. I went prematurely gray at 22. I have varicose veins that look like someone shoved a hose in my leg and I have a speckled face from skin damage. Mohs surgery and a bad accident with Ultimate Frisbee didn’t help any of that. Life has not been kind.

But I still want to be pretty.

It is especially hard to be pretty when grieving. I didn’t dye my hair when pregnant with Jack. When we lost him, I marched into a Fantastic Sam’s and told them to cut my hair as short as they could to let the rest of the grey grow out. The poor hair stylist did this with trepidation and then apologized as I sat in her chair and sobbed. I looked as sad as I felt. I should probably write that poor woman a thank you note.

When Samantha was sick, my only concern was to make sure I didn’t stink.

Breath? Check

Pits? Check

All is good. Bring in the doctors. Pretty is an after thought.

This week I signed up to be a consultant for a skin care line called Rodan and Fields. I have been using their product for two years and I really like it.

It makes me feel…….pretty. My poor face doesn’t look so grievous and dehydrated.

I write this with my new favorite word; trepidation. Being almost 49, my time as Miss Universe has probably passed 🙂 But all of us, no matter what we have gone through, deserve to feel our very best- grieving or not. Crisis or not, we can still be our very best.

And wear our tiara 🙂

You can find me peddling my wares at: https://heathersch.myrandf.com

Or shoot me a message- I will send you samples. And maybe a tiara 🙂

I am now going to enjoy a Shirley Temple. Happy Thursday all.

Tomorrow is World Kindness Day. I have a crush on this day. As I sit here and type, I am thinking of ways I can be kind tomorrow and perhaps incorporate acts of kindness into my life beyond tomorrow.

I have been the recipient of many acts of kindness and it has made all the difference. In my deepest, darkest times, I have felt unconditionally loved and that…..that has made all the difference in how I have bounced back from tragedy. YOUR act of kindness has been support and acknowledgement; creating a truth I have clung to; that I am loved and I will be okay.

Acts of kindness, reinforcement from an amazing community, a strong family, all of this creates resiliency to move forward in our darkest times.

Isn’t that what being kind is? Acknowledging another as a worthy person?

I see you, random car behind me at Starbucks. I see you. And I will buy you a coffee.

I see you person running up the stairs to the office and I will hold the door.

I see you team member at work and I will announce to my peers what a good job you are doing.

In holding a door, in buying a coffee, in acknowledging a co-worker, we may give a bit of ourselves, we give time, money, our status at work but more importantly, we show another we see them.

I see you.

In this world we are so busy. We glance at phones, look for likes, ignore what is in front of us.

For one day…..In honor of World Kindness Day.

Stop

Hold a door. Look someone in the eye. Give a dollar. Say good morning. Buy a coffee…..with the expectation that nothing may ever be reciprocated.

Just for one day.

Tomorrow I am channeling my inner Mr. Rogers. I will proudly wear my red cardigan and prompt you to be my neighbor. I’ve always wanted a friend just like you.

https://giphy.com/gifs/wontyoubemyneighbor-mr-rogers-wont-you-be-my-neighbor-33Gr5O88PgslOninGo

In the words of this man, The world needs a sense of worth, and it will achieve it only by its people feeling that they are worthwhile.

Happy World Kindness Day. You know what to do.

Happy Dia de los Muertos! Or Day of the Dead for those of us who did not do well in high school Spanish 🙂

I love this holiday. Celebrated all throughout Latin America-celebrating our dead, a celebration of love and respect for our family members who are no longer with us.

What a cool day. Because let’s face it, the only two constants in life are death and taxes.

In contrast, we have Halloween. I’m a so-so fan of Halloween but I’m not a big fan of super spooky things.

Halloween is spooky and marked with fear. The Celts began a festival called Samhain 2,000 years ago. It marked the end of summer and the beginning of winter- a time when us humans are vulnerable to cold, disease and an absence of food. For one night, October 31st, the ghost of the dead came back to earth and caused mischief, damaged crops and terrorized the poor Celts. Animals were sacrificed, crops were burned; all to keep these mischief makers away for the rest of the winter.

And today- our dead are menacing. They come out of the ground, all decayed and stinky, they eat our brains and the only way to ‘kill the undead’ is to crop off their heads and burying them deep in the ground where they can never come back again.

Gruesome. Right? Don’t mention the dead because they are bad and they will eat your brains.

Perhaps this underlying stigma is why those of us who grieve; search for a way to grieve and honor our loves without losing brain matter.

On Dias de los Muertos, alters are built in homes to invite loved ones back into the realm of the living. Water and food are offered after such a long journey. Marigolds are scattered in the household. And to date, not one person has been eaten by a zombie.

Not one person!

I know my Loves are around. I feel them in a pink sunrise, I smell them after a Spring rain. How lovely to have a day to celebrate the people we love with color, joy and song instead of shoving them back into the ground.

Happy Dia de los Muertos! I challenge you on this day to look around and remember your Loves with joy and celebration. I challenge you to ask one person about a Love they miss. My Grandma Dodie loved a good, dry martini; perhaps today we will have one together 🙂

Yesterday was the birth date of Jonas Salk.

I missed writing about this because I was sewing Halloween bags for my beautiful, healthy nephews.

October 28th is a historic date for many reasons.

1. I sewed a Halloween Bag- I will let that one sink in a bit. Yes, I sewed. A bag.
2. More importantly, it is the birthdate of Jona Salk.

Jonas Who?

Exactly.

Jonas Salk was a medical researcher who developed and discovered one of the first Polio vaccines.

We really don’t talk about Polio. We used to talk a lot about Polio. In 1953 it was the most feared disease in the US. 60,000 people were diagnosed.

In 2019 there were 78 cases worldwide

Thank you Dr. Salk.

Polio is a virus in which there is no cure but thanks to worldwide efforts, and a collaborative to vaccinate children in remote parts of the world, Jona Salk deserves a birthday worth celebrating.

The Polio vaccine was created out of the ‘killed’ polio virus. Dr Salk injected himself to see if he would either develop Polio or develop an immunity to the virus.

He develop an immunity.

And so he injected his lab assistant, his wife and their children; all developed Polio antibodies. In 1954, testing began on 1 million children known as the Polio Pioneers. The vaccine changed the life and continues to change the life of many, many children.

He never patented his vaccine or earned any money- instead he insisted it be distributed as widely as possible.

“Can you patent the sun?” He asked

I think that is deserving of a birthday cake.

This past year I have been so very fortunate to speak with leaders in this rare disease space. I am in awe of their passion and commitment to make this world a better place and our time in it as optimal as possible.

Would I have injected myself with the Polio virus?

I thought about it for a quick second. If someone looked at me with a Mito ‘killed virus’ and said, “it might kill you or the cure could save your Littles.”

Yeah, there’s a good vein right here.

There is no Mito “killed virus” but these stories give me hope. How far we have come from 1955. I imagine my parents as Littles lining up for the Polio vaccine, rubbing their arms after a quick shot, not knowing how their fate many have changed.

I imagine my grandparents breathing a sigh of relief.

And I still imagine a cure for what we face now. I am proud to know many Jonas Salk’s in the world of mitochondria.

There’s a good vein right here.

Happy Birthday Dr. Salk.

48 years ago, young Heather (that’s me) entered the world.

She had 13 grandparents.

You read that right, 13; a Great-Great Gran, sets of Greats and all of my Grandparents. I grew up knowing and loving all of these generations. And I have grown gradually losing these people. But in loving and losing my Grans, I can say they were loved deeply and lived good lives. How lucky are these 13?

At 48, I still have a Granny and a Gramps. It sounds odd at my age to talk about visiting my Grandparents; especially as I walk into assisted living with my wild head of white hair; complaining about hot-flashes.

Okay, the hot-flashes part is kind of a lie. I tend to quietly sweat and hope no one notices 🙂 Regardless, I know this connection is unique and so very special

This week my Granny lost her brother Harry. Harry was a great hugger, quick to laugh and tell a dirty joke about Dolly Parton and Queen Elizabeth.

He loved his little sis, my Granny.

I think at any age it’s hard to lose your big brother.

Granny is one of seven rowdy children growing up during the depression in Southern Indiana. Life had to be hard. Family was about survival.

As a child, watching this group of seven, I heard stories of eating what could be caught, the best way to prepare a squirrel stew and warnings to never smoke banana peels, not matter if your brother dared you.

This was a close group of seven.

Now my Granny is the last surviving of these seven. She could not travel out to Indiana so I thought I would take the trip in her steed and to pay respect to my dear Uncle.

It was a good trip surrounded by family. Family is good. Family can be flawed and flaky but at the end of the day, it is family who remember you before you were 48, who still think of you as 10 and remind you to call when you get to the airport because after all, you have not had your license for very long. Family is where you came from.

Yesterday we laid my uncle to rest. He has a plot by his parents; my Great Grans and next to his wife and daughter. The trees in Indiana were at their peak, speckling the fields of corn with yellow, orange and burgundy. A county road backs up to the cemetery and if you look out to the horizon, you can imagine that this land looks exactly as it did 91 years ago when Uncle Harry came into this world.

And how lucky is my Uncle? He died at 91. He lived a full, healthy life. He was loved and cherished until the end.

I hope to have an Uncle Harry life.

To end it all here where the wind sweeps through the corn; quiet and untouched, surrounded by family who has moved on…… may we all have an Uncle Harry life.