Dear Readers:

I would be lying if I did not say that the last couple weeks has triggered some pretty deep PTSD for me.

And so maybe some posts might be hard to read. But if you know me, you know that I put more to paper sometimes than I put to voice. I will tell you I’m fine but pour my heart out in a blog.

This is my safe space.

And so I will tell you.

I am so sad.

I am so fucking sad.

I am sad about the blame. I am sad about the denial. I am sad that the leaders in our great nation, a country that I love, have to gaslight and bolster and pontificate.

We would prefer honesty.

Honestly.

Because we know.

We know that our ICU beds can only accommodate 2 per 1,000 people. We know how many ventilators are available. We know how many people can get a COVID-19 test.

Don’t pee on my head and tell me it’s raining.

Not when it comes to my health. Not when it comes to my safety or the safety of my loves.

It is easy to dismiss medical mishaps as some else’s issue. But when we do, we forget who we leave behind.

When our son was born still at 41 weeks, we were discharged the next day with a pamphlet on grief. It was a lovely trifold in glossy paper but somehow…….

ironically……..

That tri-fold brochure on grief did not ease my pain.

One doctor called a week later. Not my primary doctor. But a doctor I remember and will admire for the rest of my life.

He asked how I was doing.

I said this was really hard. Harder than I ever thought was possible.

And he apologized.

He said in a litigious world, no one ever wants to say they are sorry. But that he really was. And he thought about Hubs and I often.

Ah. To take responsibility. It might not have been his. But as a doctor, in his practice, he took it.

Imagine. As a leader

I think about that honest conversation when I have to make really hard conversations. It compels me to pick up the phone.

I wish we could stop denying what was happening and what has happened in the last month. I wish we had a leader who would let us talk about our fears without attack. Because even if you side with our President or not, you still might be nervous, or disappointed. It would be nice it we could meet six feet across from each other and talk about this.

Because lives are at stake.

And lives cannot be returned once they are gone.

And if we cannot bank that as currency, I’m not sure where we go from here.

I’ve been thinking of you Mamas and how crazy life is right now.

I wrote this 12 years ago about my own Mama-time. The biggest judge is you. Hang in there

“You are such a great mother.”

This statement takes me aback. I guess I should be flattered. Friends and family say it and I smile, thank them and try to change the subject. When I hear it from strangers however, it makes me a little uncomfortable. Who are you? How long have you been watching us? Did I scratch my butt? Pick my nose? Make a disparaging remark to my husband? I am not used to the attention that comes with a special needs child and when I hear the great mother comment I am tempted to come back with something smart-assed. Really? ‘Cuz I just shotgunned a beer in the bathroom.

My favorite is “You are such a good mother for taking care of her.”

I have a choice?

She is my daughter. I love her to the moon and back.

But I didn’t sign up for tube feedings, seizures, therapy and the many issues that come with being Samantha’s mom. And I would give my right arm, left leg, heart and soul to make her better and to make our life different.

Am I still a great mother?

Oh……I have days when the T.V. is on, when Samantha is wiggling around on the floor, perhaps a little too long before being repositioned. I have nights when she is awake after having a seizure and I am wandering around the house raking my sleep-starved brain for a strategy to soothe her.

I curse God, rage at the heavens and console myself with yet another glass of wine.

I do not feel like a great mother on those nights.

“I will pray for you.”

I really do appreciate this one. Any healing thoughts sent off into the universe is a good thing. However, after a tough night when I have told the world what I think of their crappy divine plan for me, when I have flipped off the heavens with both fingers, I am really tempted to say. “Well thank you but you might want to wait a day or two; God and I are in the midst of a heavy duty argument. You might not get through.”

I did not write this as my pity party. Well, okay, maybe I did. Bring some Ritz crackers, and that really funky orange cheese in the squeeze can. We can talk about your pain, my pain, examine the ingredients of that funky orange cheese and perhaps the ingredients of our lives. As parents, as humans, as people in this world, we all have pain. Just because my pain, my daughter’s disability, is visible to the world doesn’t make anyone else’s pain any less real.

It certainly doesn’t make me a better mother.

“That which does not kill you, will make you stronger.”

I have evaluated the super-beings with super-human strength and they all have issues. The Incredible Hulk, major anger issues. King Kong, a great big monkey with an attachment disorder. Even Superman lived a life hiding his true identity; misunderstood and yearning to belong.

Yearning to belong.

Well heck, pass the Ritz crackers.

Whatever our pain may be; a disabled child, an ailing parent, cancer, divorce, foreclosure, it’s not the life we signed up for. When I imagined my married, parental life years ago it did not include anything messy or ugly. It did not include tough decisions. It did not include a daughter with a fatal genetic disease.

It did not require me to be such a grown up.

Am I still a great mother?

“Life is not fair.”

My Granny, Emma Mae, used to say this to me when I didn’t get my way. I used to think that life was not fair because my brother cheated at monopoly or he got the bigger slice of pizza. My reaction would be to stomp my feet, throw a couple pillows around, pout in the corner.

It still is but no one thinks it’s cute anymore.

Emma Mae never told me that the UN-fairness in life is doled out in disease, sickness and death. No one told me that ecstasy and despair are secret bedfellows and that they walk hand in hand. As an adult, moments of shear joy are coupled with moments of pain so intense it’s like someone ripped your heart out of your chest.

And I used to think fairness was all about the last slice of pizza.

I do confess….there are days where I am the Supermom. Days when Samantha feels good, the feeding pump never clogs and we don’t see a seizure. I savor those days; inhale them like lavender and the sweet smell of my daughters head. I puff out my chest. Give my best profile shot and stare knowingly into the horizon; my cape flowing in the wind.

But I do keep an eye on my back. The heavens are smiling down and yet have a complete record of the last time I flipped them the double bird.

And I do confess…..my pink Wellies and bottle of Merlot are by the door. You never know when life’s muddy slog will get the best of you.

I am cheating on my blog post today. I know, only one day into my promise and cheating already……gives you insight into what type of student I was, or am 🙂 No judging, this is a judge free zone.

I love smart sci-ency folks. If it weren’t for social distancing, I would snuggle on up to them, press their big brains against mine in hope that some of that sci-enciness would transfer. Alas, it has not happened yet but I keep hoping.

This was a facebook post from one smart friend to another smart friend who found an article here from the good people in Wisconsin: https://wsau.com/blogs/tom-kings-blog/54/its-not-just-the-flu/?fbclid=IwAR1tPcmB675Tbn0SPTekwWv0bm_V_vXQ5mptOBE-UeV7cUv8imFo04iS8s8

Ah Wisconsin. Land of beer, cheese and good people. I now have a craving for fried cheese curds and nothing can be done about it. Stupid pandemic.

Here is a summary of the article. I find it fascinating and terrifying and a reason why I am taking this seriously:

Feeling confused as to why Coronavirus is a bigger deal than Seasonal flu? Here it is in a nutshell. I hope this helps. Feel free to share this to others who don’t understand…

It has to do with RNA sequencing…. I.e. genetics.

Seasonal flu is an “all human virus”. The DNA/RNA chains that make up the virus are recognized by the human immune system. This means that your body has some immunity to it before it comes around each year… you get immunity two ways…through exposure to a virus, or by getting a flu shot.

Novel viruses, come from animals…. the WHO [World Health Organization] tracks novel viruses in animals, (sometimes for years watching for mutations). Usually these viruses only transfer from animal to animal (pigs in the case of H1N1) (birds in the case of the Spanish flu). But once one of these animal viruses mutates, and starts to transfer from animals to humans… then it’s a problem, Why? Because we have no natural or acquired immunity.. the RNA sequencing of the genes inside the virus isn’t human, and the human immune system doesn’t recognize it so, we can’t fight it off.

Now…. sometimes, the mutation only allows transfer from animal to human, for years it’s only transmission is from an infected animal to a human, before it finally mutates so that it can now transfer human to human… once that happens..we have a new contagion phase. And depending on the fashion of this new mutation, that’s what decides how contagious, or how deadly it’s gonna be..

H1N1 was deadly….but it did not mutate in a way that was as deadly as the Spanish flu. It’s RNA was slower to mutate and it attacked its host differently, too.

Fast forward.

Now, here comes this Coronavirus… it existed in animals only, for nobody knows how long…but one day, at an animal market, in Wuhan China, in December 2019, it mutated and made the jump from animal to people. At first, only animals could give it to a person… But here is the scary part…. in just TWO WEEKS it mutated again and gained the ability to jump from human to human. Scientists call this quick ability, “slippery”

This Coronavirus, not being in any form a “human” virus (whereas we would all have some natural or acquired immunity). Took off like a rocket. And this was because, Humans have no known immunity…doctors have no known medicines for it.

And it just so happens that this particular mutated animal virus, changed itself in such a way the way that it causes great damage to human lungs..

That’s why Coronavirus is different from seasonal flu, or H1N1 or any other type of influenza…. this one is slippery AF. And it’s a lung eater…And, it’s already mutated AGAIN, so that we now have two strains to deal with, strain S, and strain L….which makes it twice as hard to develop a vaccine.

We really have no tools in our shed, with this. History has shown that fast and immediate closings of public places has helped in the past pandemics. Philadelphia and Baltimore were reluctant to close events in 1918 and they were the hardest hit in the US during the Spanish Flu.

Factoid: Henry VIII stayed in his room and allowed no one near him, till the Black Plague passed…(honestly…I understand him so much better now). Just like us, he had no tools in his shed, except social isolation…

And let me end by saying….right now it’s hitting older folks harder… but this genome is so slippery…if it mutates again (and it will). Who is to say, what it will do next.

Be smart folks… acting like you’re unafraid is so not sexy right now.

#flattenthecurve. Stay home folks… and share this to those that just are not catching on. 🤓

WASH YOUR HANDS!

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.