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Grief in a time of Grieving

I woke up at 5:00 this morning- wide awake, listening to the Starlings dance on the roof and watched the sun slowly iluminate Longs Peak.

June 30th always wakes me with a jolt, a collective FU(K, a deep sigh and a muddled plan to get through the day.

It’s hard to relive one of your saddest days. Grief freezes time and memories into smells, sounds and snippets as vivid as film. As the day goes on, the edge wears off. I become distracted and the day passes. But the morning of June 30th is my time. My time to remember my Jack. My time to remember how a day started with such promise and how it ended.

15 years of this June 30th- some years are better some years are worst. But today will always be a deep stain on the rest of 365 days. And today, as July-eve begins, so does a collective month of bittersweet anniversaries.

And I am not on my ‘A’ game this year.

This year I am tired.

Four months of unknowns and quarantines, and riots and a bad economy and a pandemic that keeps raging; I am not going into July as my best self. I’m showing up disheveled, a bit anxious and fully aware that the tribe I lean into during this time might be feeling the same way. I have lost my big girl pants and kick ass boots.

And I am tired of rationalizing the last four months knowing that we are still in the thick of it. I am so tired of fighting for my joy. I’m tried of drinking the kumbacha and marveling at how great my coffee tastes in the morning.

And you know what? My homemade masks are really the worst ever. My husband asked me the other day if we could please just buy some.

Fine.

Quitter.

I will be back. I’ll be back in some annoying joyful way…..give me about 10 hours, a glass of wine and access to our Courage Classic pictures.

This morning? Screw it. This morning I will lie in the suck for a bit.

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Reform

I have been hesitant to write about this for years because the memory is so painful.

And I have been watching my friends divide and unravel in the last week.

I have remained silent.

Part of the reason is that I am a privileged white woman. I am. I see this fight. I know this fight is overdue. And I am so afraid of saying the wrong thing. Picking up my phone at the wrong time, exposing myself as a Karen.

Can I just pause for one second and apologize to ALL of my friends named Karen? I am so sorry this all somehow got pegged on your name. Sorry, back to my thoughts.

I have admittedly, been a Karen. I have walked in with my Marriott points and demanded better service, I have switched rooms, tables, asked for the manager. I have at times been an ass. I am working on this.

A friend of mine took her daughter into a Chik-Fil-A a couple weeks ago. My friend is half Hispanic, half English. Her daughter’s father is black. They ordered their fries well done, the manager refused and somewhere along the way, the manager told them they could wait for their fries while they waited for the police.

My friend was ready to sit in the booth and sip her sweet tea while she waited for the police until her daughter started to cry. “No police. Please Mommy.”

They left without their well-done fries.

My friend is fine to wait for the police. Her daughter is growing up to fear them.

I do not care what side you are on. Read the above again. I am not for defunding. I am for reforming. Why does this nine year old fear the police?

I was on the wrong side.

Once.

This is ironic because I really pushed the police several times in my 20’s. They could have hauled my drunk ass to jail and everyone would have said, “Yeah…..well.”

And for that I thank you.

But at time when you and I really needed to connect, we missed it. We missed it to the point I had to go through trauma therapy to be able to write and post about this as I do now. EMDR- three months. I highly recommend it.

On July 25, 2010 my daughter died in my mom’s house. She suffered a massive seizure. When paramedics arrived, there was no heartbeat but they kept working. I jumped in the ambulance as we took off to the hospital.

My husband grabbed his keys to follow behind. The detective on-scene stopped him. He told Hubs he would drive him. There was no option. Get in the car.

My parents tried to get in their cars to follow. They were told they had to stay behind.

This house in Highlands Ranch became a potential crime scene.

My husband drove with the detective. He was told that we would be separated for questioning. We were not under arrest. We were not suspects. We had done nothing wrong but this was protocol.

The hospital called our primary care physician. While she was devastated, she told the ED doc this was not unexpected- that our girl was very sick and had been for a while. The ED docs accepted this. Douglass county coroner was on their way and we all started the lifetime process of grieving our girl.

It was Sunday and the coroner had to be paged at home. According to our jurisdiction, until a body was released, we were under investigation.

Hubs and I were separated and we were not allowed to be alone in the room with Samantha. We could not leave the hospital. We were stuck; waiting for the coroner.

Oh Lord. I was so mad and sad and just let me grieve and be with her. I paced the hall like a caged tiger.

“I know how you feel,” said the young policeman denying me entrance into her room.

I may have thrown an F-bomb. I didn’t care.

How dare you.

How dare you?

“What?! How could you possibly know how I feel? You need to let me in there!”

I had pushed my luck. The room changed. People stood up, faces grew hard.

Hubs touched my arm and pulled me back. I watched people react. I was a suspect. Everything I held true about this world and my place in it had changed.

Things could go wrong very quickly. Medical evidence and doctors clearance be dammed. I was suspect.

I was so sad. I was so angry. But beyond all of those things, I was very scared.

And so I complied. I did not say another word. We said goodbye to our child with that same policeman looking over. We never had another moment alone with our girl.

They confiscated all of the meds in her diaper bag. The detective told me he was taking them. I looked in the bag and saw my Zoloft sitting on top. I joking asked if I could have that back because I might need my anti-depressants.

I told a joke because I was so afraid of doing something wrong.

Three hours later they cleared my mom to leave. Her lovely upper middle class house in Highlands Ranch was searched inch by inch. The poor dog was so traumatized he blew his entire coat for three weeks.

This was protocol. I get that. You were following step by step what was in the training manual.

I do not blame you. Any of you. But maybe we can all sit at a table and say when a traumatic event happens it is not one person against another. There is no right or wrong. Maybe we can ALL do better.

I contacted Douglas County Police. They told me all child death cases are treated the same. I asked about creating a program to first responders recognize a medically complex child.

They told me there was no budget for that reform.

What if we had been black? What if it wasn’t in Highlands Ranch? What if we were in 5 points? What if there were something suspect on either of our records? What if I fit every single profile we all talk about.

What if I fit that profile and I threw an F-bomb in the Emergency Room. Would the outcome be different? Even worse?

This is not you against me. This is us. As a community doing better.

I thank you for what you do. With all of my heart. I know this post might make some of you angry.

I implore you to think how you would have responded had it been your child.

And if you were black.

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Fight for your Joy

I got on my bike last weekend. The wheels were covered in bird poop and the tires were flat.

My bike shorts are a little snug due to embracing the COVID carbs but I pretended I was a burrito and snuggled on in anyway.

For some reason the clips were missing from my bike shoes. Seriously. Where the hell are my bike clips?

So many reasons not to ride.

Tires were pumped with a small prayer that flatness was due to neglect and not a leak. Bird poop is stubborn but scrubs off with a little persistence. Missing clips? eh. I can do it.

My friend Ging and I rode for 30 miles. Not bad for the first ride of the season, even if it’s almost June. Heart rate rose, legs got tired, Longs Peak was on my horizon.

I am so happy. I thought.

Seriously, giddy, giggly happy. As turned home, I told myself, remember this joy.

Last Friday the pools opened up in Boulder for lap swim. I reserved lane 3 at 4:00. I love summer lap swim. The water is so clear, the sun shines on your back, all you hear is your breath. I cannon balled into the pool letting the water surround me; fill my toes, my fingers, my non-showered hair.

Quiet.

Inhale.

Exhale.

My God I am so happy.

It is small. Last year it would have been insignificant. But it these times, when it is so easy to go down a deep, dark rabbit hole, I must fight for one thing.

I must fight for my joy.

I must fight for my joy.

I am a ninja-warrior, joy detective, finding moments, breathing them in and searching for others like them.

I must fight like hell to keep my head above the chatter and to know when it sucks me down. I KNOW when I am better, my head is clear. When my head is clear, my interaction with you is better. And maybe that joy can spread.

Seriously. Find it. Write it down. Inhale it. Fight for it.

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Dear America,

We need to chat.

It seems our relationship has become tangled and a bit complex in the last year or two. And to be perfectly honest, the last couple months have been a little trying.

Here’s the thing. I really, really like you. I have never doubted that a life of incredible opportunities is nestled in the fact that I was born in this country. Call me naive but I had a solid belief that we, as Americans will do the right thing. Other countries face unrest, tyranny, division, riots but not us.

Maybe its me. Maybe I became a tad complacent, snuggled in the folds of the Stars and Stripes, knowing we may not always agree but knowing that we would rally to do what is right. We are founded in a Constitution that changed the world; trusting that the precious branches of our government prevent one branch from over-shadowing the rest of the tree not only for ourselves but for the rest of humanity.

I should have fought for you harder. I should have watered that tree instead of just basking in the protective shade.

But gosh, you’ve been so strong for so long; overcome a depression, world wars, arms race. I just assumed you were okay. My bad. I should have listened. Instead of reading the paper at dinner, I should have stopped, asked you what you needed. I should have told you how amazing you are and how much I love those three beautiful branches as a way to divide control.

Can we come back? I hardly recognize you anymore. You’re quick to react, a little snippy. I’ve noticed your old friends never call you to hang out anymore and quite honestly, I’m not sure I really approve of your new friends.

But I do love you. I am grateful for all you have done. We might not get back to where we were but perhaps it can be better for both of us?

I miss you.

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How My Daughter Prepared Me for a Pandemic

Life changed within a week. For so many, everything was changed, altered or destroyed; plans, expectations, jobs……

March came in like a lion and left like a pack of demon mutant Zombies that multiplied into April, camped out through May and are trying to nestle into June.

It is hard to watch everything crumble before your eyes. It is devastating and demands all the feels.

Hubs and I have nestled in on the 20. It’s just us and the 14,562 rabbits that have decided to call this place home. We have battend down the hatches, are riding out the storm and counting all the ways we are incredibly fortunate.

But this is not our first rodeo- it is not our first life pivot. It’s not the first time we have watched life go straight to hell before our eyes. The last hunkering reduced us to one paycheck, medical bills, a complex medical child and a hoarding of purel (yeah, we started that, sorry).

Ironically this was around 2008, our last big economic down turn. I have no recollection of that recession. Seriously, people compare the Market today to 2008 and I have no context. I was knee-deep in tube feedings and seizures.

But Samantha taught us well. She created our playbook for this time. And the lessons we learned over ten years ago still apply today.

Respect the germs. Oh, we were so respectful. People talk now about being ‘scared’. We didn’t live our life scared but it was the fact that those germy germs were everywhere, and could knock down a medically fragile kiddo in a day. I wasn’t scared. I just enjoyed things like sleep, a night without seizures, not having to deep suction my child because she couldn’t cough the nasty up. We could whip out an alcohol wipe like we were in a gunfight.

Social Distancing. We became masters at the Social Distance. We chose the booth in the way back when eating out. We moved away from people if they got too close. And we cancelled many, many events. The tough part was that no one else was social distancing. I cried many an alligator tear for events that we could not attend, friends we missed, parties we had to turn down. I feared our friends would leave us as we watched a life go by.

Be mindful of your fear; the Primative Brain is a bastard. There were moments in those four years that I was not proud of. Fear, anxiety and grief got the best of me. I screamed at doctors. I stormed out of rooms. I once lobbed a chair at Hubs. I wanted control, I needed control, I couldn’t rage at something I couldn’t put my hands around so I raged at people.

But here is what I also remember; that time was so short. We had four years with our girl and for every week we were in the hospital and I begrudged our life, those four years were fleeting. Four years taught us that our body is fragile, touch is precious, a scent triggers a memory stronger than sight and you only get one precious body.

Four years taught us no matter how sad you are in this moment, this moment will change; you might be happier, you might be even more sad but this moment is fleeting; do not invest too much time where you are at this second. Stop. Breathe. Access.

Four years taught me all the reasons to be better. Fortunately, I have the rest of my life to try and be so.

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Love me a Scientist

Haaaaannnnnngggggg on readers!

Put the children to bed, pour yourself a glass, put your ego aside and hang on.

Mama’s on a rant.

I have tried. Really I have.

I wake up everyday, pull out the black yoga pants that are next up in roatation, pour myself a cup of coffee and sit at my computer.

I inhale. And exhale.

And say to myself “I will focus on what I can change, I will write my gratitudes, I will not engage on facebook, I will not engage on facebook.” And I sip my coffee, gaze out the window and say to myself “I am grateful. I am grateful. I am grateful.”

By 5:00 in the evening my zen has gone to hell in a handbasket. And while I am trying to focus on my joy, I have realized that writing it out gives me joy. So hang on. I’m about to verbally vomit all over you.

And since you are reading, you can grab a coveted Clorox wipe and clean it up.

Apologies.

I need a leader. I crave a leader. I listen to Fauci and Cuomo and think, “Just tell me something beautiful and intelligent, give me some facts, show me your power point. OH. That’s a nice graph. PPE? Yeah, I like PPE.”

I struggle and search because my President (yes, he is my President) well, he leaves me wanting a bit more.

And today he stopped funding the World Health Organization.

I pause.

For just a second. Think about it. He. Stopped. Funding. The. World. Health. Organization.

In the middle of a pandemic.

I will stop for a second and say…..this is not a political issue. Ya’ll know me to be a tad liberal but I get my Republicans. Hubs and I are DINKS with no children living on 20 acres. I get it.

But leave my scientists alone. Seriously.

If you know me you know how I love a scientist. Have you sat done with a researcher and talked about what they do? That brain is so enormous and they are so committed to change the world.

You get one bloody mary in our mito doc and he will go on and on about the importance of amino acid supplementation for our mito patients who have a mutation in any ‘ARS’ gene.

We sat over Samantha’s bed one night before we knew our diagnosis and he talked about the testing he was doing.

“If you figure this disease out, we could name it after you.” I said.

“I never want to be named for a disease,” he said. “I want to be named after a cure.”

These are the people we have decided to no longer fund.

Did I mention we are in the middle of a pandemic?

Have you been to a research lab? When this is over, I will take you to the mito lab at Anschutz. There is nothing fancy. Every corner is occupied. They mention every piece of lab equipment we funded.

The year the lab was about to close, our Mito doc came to me needing $30,000 to continue his research. We were able to fund the lab. That investment has blossomed into life changing research.

$30,000- life changing research.

Do you know that we have mapped the DNA of the Cornona Virus? That mapping will lead to a vaccination. Scientists did that. Lovely, beautiful, intelligent, passionate scientists.

We are not fighting another country yet somehow we have managed to fight each other.

We can continue to point and blame and fight and deny but that does nothing.

Perhaps instead we should support those who are fighting for a cure, our lives and a return back to normal.

I love you my scientists. I love your beautiful brains. Keep fighting the good, intelligent, statistically valid fight.

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In Spite of Ourselves-

Years ago Hubs and I sat at the table after dinner. We shared a bottle of Cab and listened to Pandora.

John Prine and Iris DeMent sang ‘In Spite of Ourselves’; a gritty, no nonsense song about the silliness of loving another and loving that person in spite of our crazy flaws.

In spite of ourselves we’ll end up a-sittin’ on a rainbow
Against all odds, honey we’re the big door-prize
We’re gonna spite our noses right off of our faces
There won’t be nothin’ but big ol’ hearts dancin’ in our eyes

“Honey,” I said. “This is us. This is our song.”

He smiled and nodded.

This is our song.

I mean, don’t take it too literally- me and the Easter Bunny aren’t that alike but really, against all odds, honey we’re the big door prize.

John Prine left us this week. Another great human I never knew but attached my heart to. He was a great story teller, a fantastic musician and another casualty of COVID-19.

I love this song. Hubs and I have truly been against all odds. When I look at times now and where we have come; this marriage, no matter how wonky it is at times, is one of my greatest accomplishments.

He’s my baby, I don’t mean maybe
I’m never gonna let him go

I post this now because it’s easy to love when everything is hunky dory; the kids are at school, the job is great and that Disney cruise to the Bahamas is booked for May.

It can be a tad more challenging when everyone shares a living room table, jobs are on the line, the Disney cruise was cancelled and you have to help your kiddo find ‘X’ in Algebra.

Where is the HELL is X?

If X insists on be illusive, shouldn’t we just leave X alone? Where is X? Maybe X just doesn’t want to be found.

I digress.

These times. These times are a challenge. A challenge for us all. I hope at the end, you look at your person and know that this is your baby, don’t mean maybe.

And thank you John Prine; for your crazy love lyrics. You will be missed.

He’s got more balls than a big brass monkey
A whacked-out weirdo and a love bugged junkie
Sly as a fox crazy as a loon

Payday comes and he’s a-howlin’ at the moon
He’s my baby, I don’t mean maybe
I’m never gonna let him go

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All The Feels

I am a crier. I have always been. I don’t shy from a good ol’ fashion ugly cry- the kind where you look in the mirror after, all puffy and shrunken and think, “Who stole my face?”

It’s a good thing I dont mind a cry. There have been days where I’ve wondered how many tear ducts I have and how much saline can one person produce.

I cry a lot.

Today was no exception. Last night I read that Charlotte Figi died from complications due to COVID-19. Charlotte was the ‘Charlotte’ behind Charlotte’s Web; a form of medical marijuana formulated to control epilepsy and intractable seizures. Charlotte had a devastating disease call Dravet’s Syndrome. She went from having 300 grand mal seizures a week to 3 a month while taking Charlotte’s Web.

Intractable seizures are hell. The brain has waged a war against itself and the entire nervous system. As Charlotte’s mother said, “You hold her and feel her seizing and wonder if this will be the last movement you feel from your child.”

The Figi family changed outcomes for so many families. They enabled us to ask our epileptologists the hard questions, “Why not CBD oil?” “Why not try this?”

They pushed the medical community and in turn enabled us desperate parents to push too.

Dr. Sanjay Gupta has written a beautiful tribute to this family: https://www.cnn.com/2020/04/08/health/sanjay-gupta-weed-charlotte-figi-tribute/index.html

We love these pioneers. Rather it’s fair of not, the special needs community attaches to these families; we watch and learn. They give us hope that someday we too can be pioneers; find that secret cure or a therapy.

I read the news last night and cried; cried for a family that fought so hard. And of course because it’s me, I posted my sad on Facebook.

“Are you okay?” A friend texted me.

“Oh. What? No, I’m fine.”

“Hmmmmm.”

Well okay, I’m not fine.

I am struggling as I think many of us are right now. But as I stated in my last post, there is an undercurrent of grief in my life that I am familiar and comfortable with. I can talk about it because it really is a part of me.

We should be sad, shouldn’t we? 88,000 people have died since December- almost 15,000 in the US alone.

It is during these times I inhale

and breathe out a collective fffffuuuuuuucccccckkkkkkk.

I just did it. Try it. It feels awesome.

I’m going to do it again, even though this is a family blog

…..fffffffffffuuuuuuuuuuccccccccckkkkkkkkk

We are not broken if we are sad. Sadness does not mean we are depressed. Sadness does not mean we will never be happy again. Sadness holds no blame. Sadness just lets you feel the feels.

We have been raised to silo our emotions. People ask how we are and we reply with one word answers; good, fine, sad, mad, happy………But we are not one word humans. We are so much more than fine.

We can be sad but still be grateful for what we have. We can be mad but still love. Emotions are not either or. We are not an x/y equation that must be solved.

Our society doesn’t help with our emotional fluidness. Media is filled with either stories of great sorrow or great triumph; peppered with all of the reasons why we should try to do what we can to be happy and find joy. We have become emotionally schizophrenic- lead by what triggers a response, not by what we really feel.

You ready? Inhale deep and do it again…..fffffffffuuuuuuuuuccccccckkkkkkk.

Am I okay? I can only be the best barometer of who and how I am today and what feels right for me. How many tears? How many kleenex? Oh yeah, it was an okay day.

And sometimes, its okay not to be okay.

Love and light to the Figi Family. We hold your sadness too.

And love to my friend. Thank you friend.

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Grief in the Time of Corona

Us Grievers are a funny lot.

We look normal.

We act normal…..most of the time????

And many of us function fairly well in everyday society.

But tiny variables throw us off a bit.

And slightly bigger issues, say a worldwide pandemic, trigger emotions that search for a place to live. Emotions buzz the face, fester, invite other friends…..and left unattended create a pool of emotional ugliness that demand to be attended.

I had to sit in my ugly on Tuesday. It was more of a plop. It was bit of hard landing which told me perhaps I had been avoiding it for a while.

I was on our mito support group call. We were talking about COVID19 and the anxiety these days produce for our medically complex community.

I should have no anxiety. Hubs and I are social distancing. We are healthy. We have our jobs.

We are fine.

We are fine.

We are fine.

But the underlying current of our fine-ness feels surface level. Underneath my skin, is a layer of trauma from times when we were not fine. A time when we lived every second with a medically complex child; this layer tends to bubble up when the earth is off its axis.

What is difficult is that my trauma has no tangible place. Our children are no longer with us. Hubs and I are healthy. I worry for my other Loves but the amount of worry for my other Loves seems sometimes seem insurmountable.

On Tuesday, as I sat in my ugly plop, it hit me. It hit me on a support call with mito patients.

“I don’t want you to die,” I blurted to the group.

Queue silence.

And more silence.

And so I went on, “I feel like such an ass. I am healthy. I am fine. Hubs is fine. Our jobs our fine. I have nothing, nothing, nothing to complain about.

“But in losing my Littles, I lost so much. And nothing else seems sacred. If I can lose them, I can lose anyone.”

I paused.

And then went on.

“I’m like Tom Hanks in the Green Mile.”

“Who?” asked a friend.

“The Green Mile. Tom Hanks had to live forever watching his loves die because he let an innocent man be executed. Well, except the mouse. The mouse was still alive. Maybe I’m the mouse.”

“You’re a mouse?”

“What? A mouse? No. I’m not. I’m okay. I just don’t want any of you to die. Really. Please don’t die.”

My support group promised to try to not die.

And so I sat a bit long in my ugly. I recognized the smell….survivors guilt with a touch of paranoia. I held it up to my nose before remembering I should not touch my face.

“Heather?” Said someone on the call.

“Yes?”

“I’m sorry. I am really, really sorry.”

“Yeah. But no, really.” I said. “Oh no. Don’t be sorry. I’m okay. I’m just happy to put a name, a face, a smell,  to the uncomfortable I have been feeling. Oh, whew. I smell.”

And with that, I heaved myself from the ick and excused myself to go to another meeting.

Be kind to you, sometimes you don’t know the battles you are fighting.

And don’t die.

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A Disruptive Variable and the FDA

Being in the rare disease space, I have been privy to several clinical trials. Clinical trials are extensive, they can be difficult in the rare disease space and many times, companies who have developed a drug for a rare condition do not get that coveted FDA approval.

This lack of approval is devestating. The financial impact to a pharma company that has dedicated time, resources and money can force a company to close it’s doors. And to families who invested time and money (many trials do not offer stipends), the biological investment of their bodies (to put THIS lightly) and the emotional investment of hope, make a failed trial hard to digest.

Clinical trials are complex. A pharmaceutical company has to gather a statistically valid group of patients with same disease, they partner closely with a medical center that can manage a clinical trial and report findings back to the FDA.

A couple of years ago, our doctors at Children’s Colorado were granted a clinical trial of a drug in Phase Three called Elamepretide. This drug showed efficacy in helping those with mitochondrial myopathies. With mitochondrial disease, the membrane of the mitochondria become ragged, making the transmission of energy even more difficult. Elamepretide smoothed out the membrane.

Brilliant! Let’s do it!

And because it addressed the foundation of the mitochondria, not the complex genetics behind it, this drug could potentially be used for multiple genetic mutations impacting the mitochondria.

WHERE DO I SIGN????

I was so stinkin’ excited for this clinical trial! Which is funny because I would only be a bystander and not a participant…..no matter…..bring me your wonky mitochondria!

And so we started to recruit for patients. This too was a challenge because is it hard to diagnose the gene that contributes to mitochondrial disease. Participants had to have a confirmed genetic mitochondrial mutation be a part of the trial.

My dear Bro was accepted into the trial. When you are a part of a clinical trial, you become one of two control groups; those who get the med and those who get the placebo. This trial was double-blind in that no one knew, not even our doctors, what version patients were getting.

I would ask him about the trial in a trying not to pry, really wanting to pry type of manner. Those who know me know how relentless I can be.

Please send notes of respect and admiration to my Bro.

For six months Bro injected himself with the (maybe) or maybe not med. He reported how his day went and attended monthly appointments.

Monthly appointments included various tests; fasting, walk tests, strength, it really is a lot to ask of patients.

I was allowed to go to the last appointment of his six month trial. On this last day, he would get the real med, no matter if he was on the placebo before. He could receive the med until we got FDA approval.

I say ‘allowed’ because sometimes I can be a tad overzealous. And I was really excited about this. We had raised so much money for our mito clinic and now they were a part of this trial and my brother could benefit………I was not just a bull in a china shop. I was like a bull who had spent four days at a rave in a China Shop.

LETS DO THIS!!!!!

Here is what I realized very quickly….people who manage clinical trial sites can smell people like me out…..immediately. And they are awesome at shutting us down.

Boom. Within five minutes she had me hog-tied and gagged in the corner. While she politely asked questions to my brother.

How was he feeling? Energy levels? Good week? Bad week? They took blood, tested his leg strength and then prepared to send him downstairs for a six minute walk test.

The walk test is a standard FDA assessment. It’s also a toughie when you have a neuro-muscular disease and walking is a challenge (this is a whole different post! Stay tuned for part three!).

“Can I go down with him?” I meekly asked from the corner.

The clinician sized me up, “Yes, my assistant will take you both downstairs for the test.”

And off we went to the bowels of Children’s Hospital. It was a long, silent hallway. The lovely clinical assistant took a tape measure and marked a certain distance. And then it was time. It was time for the walk test.

My God it was quiet. So quiet. Bro walked along. I could not just stand here all quiet and meek in the corner. I started to cheer him on.

“WHOOP! WHOOP! You got this!”

And then I decided he needed some music.

Queue the Rocky theme song which I just happened to have downloaded on my phone.

And how can you play the Rocky theme song and not SING to it????

Gettin’ strong now!

Coming on Now!

Gonna Fly Now!

FLYING HIGH NOW!!!!

Every once in a while someone would poke their head from around the corner. No matter. It was me and Bro. And a clinical trial.

And an assistant that looked really uncomfortable. Like she might throw up uncomfortable.

No matter. We owned this trial! We owned this walk test!!!!

Yeah, we really didn’t.

Here is what I realized later about collecting data during a trial. Variables need to be the same all along the trial so that data has consistency. Apparently the Rocky Theme song is not a consistent variable.

I knew none of this.

We got back up to the room to a Clinical Trial Manager who was fit to be tied.

“You cannot sing the Rocky Theme song during the walk test!’ She scolded.

“I didn’t know!” I contested. “And no one said anything! Your assistant didn’t say a word. I would have stopped singing!” In truth probably not, I mean really; I didn’t start the fire. It’s been always burning since the world’s been turning.

“I am just as unhappy with her as I am with you.”

Turns out, all was forgiven (somewhat). I took my brave Rocky-walking Bro out for sushi and a beer. And the Pharma company allowed the final report to be submitted under the caveat that data was skewed due to a disruptive variable.

A disruptive variable! How perfect.

The other day I listened to our President announce FDA approval for Chloroqunie. I watched as Dr. Fauci put his hand to his forehead.

Alas, another disruptive variable.

And onto Part Three!

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My Disruptive Relationship with the FDA Part 1

The last 18 months, I have had the amazing opportunity to see how the FDA operates in regards to drug development.

It really is amazing to witness the process. The mission of the FDA is as follows: The Food and Drug Administration is responsible for protecting the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of our nation’s food supply, cosmetics, and products that emit radiation.

Regulating all of these elements is a tall order; managing a country that seems to want to super-size, smoke or self medicate itself out difficult situations. We have grown up thinking that there has to be a pill I can take- there has to be a cure- because there is always a cure.

To be fair; my first run-in with the FDA was 14 years ago was when Samantha was in the hospital with a form of seizures called Hypsarrythmia. Here poor little brain was seizing 90% of the day these seizures had to be stopped. We were given two options: a steroid; which would be really hard on her compromised system or a medication called Vigabatrin.

“Well let’s go with the vegamite drug.” I told our doctor.

“Vigabatrin.” She said.

“Yeah, that.”

“Well, funny thing about that drug,” she said. “It’s no longer FDA approved.”

I sat back in chair, prepared for the very worst, “Oh God,” I said. “What does it do?” I thought of all the movies about a drug gone bad that in hindsight I never should have seen.

“There are some cases where use of the drug limits peripheral vision.”

“What? Peripheral vision? So maybe she can’t catch a ball?”

“Or drive when she gets older,” Our doc said.

“Well, she is my daughter so her hand-eye coordination is suspect to begin with. As for driving, I will drive her to the moon and back. We just need to give her brain a rest.”

Our doctor agreed and for a year we smuggled contraband seizure medication from Canada. We paid out of pocket and were happy to do so. This form of epilepsy disappeared from her EEG in 8 weeks.

And so began my relationship with the FDA. At that time I was perplexed by how they deemed this drug safe or not. In my mind, the outcome of the disease was much more harmful than the side effects of the drug. In their mind, they had too many data points that said no.

As a side note, Vigabatrin is now again FDA approved and used often and effectively for this form of epilepsy. And I got to live life as a smuggler running the goods from Canada.

Win-Win, right?

But the disruption does not stop here. The FDA and their meticulous data capture and me with a knack for chaos will collide again.

Onto part two.

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If You Cannot Be Anything Else. Be Honest

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.

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Confessions of a Super Mom

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.

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The Genetics of a Virus

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!

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Where was God.

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.

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My Corona

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.

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RARE

Join us for International Rare Disease Day, February 29, 2020. Go to http://www.rarediseaseday.org for more information

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 24th– 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.

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Happy New Decade

Stella!!!!!

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!

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This time on this Earth

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!

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Beauty and the Grief

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.

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Kindness and Your Place in the World

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.

Mr Rogers Dance GIF by Won't You Be My Neighbor - Find & Share on GIPHY

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.

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Zombies vs. Calavera- Perhaps this is what’s wrong in our culture

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 🙂

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“I have had dreams. I have had nightmares. But I have conquered my nightmares because of my dreams” Jonas Salk

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.

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A Light Wind Swept over the Corn. And All Nature Laughed in the Sunshine- Anne Bronte’

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.

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NaNoWriMo

November starts NaNoWriMo- a month of writing in November. Writers commit to 2,000 words a day. I have signed up in HOPES that this will kick off my memoir.

As a teaser, here are the first 1,000 words:

I know it in my bones.

I know something is wrong. I feel it in my hips, my tibia, my fibia, my femur.

But my bones lie. They carry me forward when my heart palpitates, when my breath increases, when my tummy rumbles, when I pee my pants…..none of that matters….my bones carry me forward.

Perhaps if I had knew how my life would change, I would stop for a moment. Hold a moment of reflection at the door. Notice the blue of the sky or the wisp of the clouds. Take one last breath, inhaled the fresh air.

But the wind was bitter. Stupid blue sky and January wind.

It tears through my coat and her tiny face grimaces against the chill. The air is not fresh but full of cigarettes and fear. The snow piles in dirty mounds against the walkway.

And despite the inconsistent beating of my heart and the bile that collects against my throat, my bones carry my daughter and walk through the door. 

Inside isnt any better; florescent lights, tile floors, industrial cleaner, hand sanitizer, couch, television, desk.

The doors close behind me and the people on the other side of the desk looked up.

I smiled and glance at the T.V.

Huh, Who’s the Boss, have I seen this one? Is this the one where Tony and Angela kiss? That was a good one.

May I help you?”

“Huh?”

The woman behind the desk nodded in my direction, “Can I help you?”

“I think my daughter is really sick,” My legs carry me to her desk. She eyes a monitor.

“Fever?”

“Slight”

“Nausea?”

“No, Diarrhea.”

She nods and continued to types.

“Why are you here?”

Well that’s a loaded question lady, I want to say. Instead, I swallow hard, asking my stomach to cooperate. “I think she is really sick. She doesn’t take a bottle and when she does she throws it up. She doesn’t sleep. She doesn’t hold her head.”

My head fell to my hands, “I don’t know what to do.”

She types.

I watch.

I develop a disdain for this woman.

“Wait over there, we will call you.”

My jaw forms into a smile. My hand grips the handle of the baby carrier and my legs carry me to the waiting room.

I sit and gaze at the bundle in the car seat; she is perfect and broken, feverish and beautiful, all wrapped up in pink pajamas with dancing sheep. I touch her cheek with my pinky.

Hubs is suddenly by my side. When did he get here? He takes the baby carrier from my hand. My hand is empty. My bones ache.

“Don’t touch anything,” he said glancing around. “Who knows what this place is crawling with. Do you have the purel?”

I hate all of this. I hate the nurse at the front desk. I hate Tony and Angela deciding if they should kiss. I hate the way the polyester feels on my butt. I hate everything about this situation.

I look with a stewing gaze for more things to hate.

EXIT states the sign to my left. Oh you Exit sign. You tease. How smug you are, signaling a door where you can walk out. You advertise on high. You can leave here. You can walk out. But it will cost you your soul.

What is the price of my soul? What is the cost to leave?

I can bolt.

I can leave.

We can all leave.

Maybe it was a mistake to come here. We can get in the car and drive home. Stop at the drugstore for Baby Tylenol and Benadryl.

I have always overreacted.

I’m sure I am overreacting.

I stand between the EXIT and EMERGENCY. Between the howl of the wind outside and the stagnant air inside; my empty hand searching for the weight of the baby carrier wondering who’s life this could possibly be.

In truth, my reality is between the signs. My daughter is sick. She is so very sick and I know it. Beneath layers of fleecy blankets and pink pajamas with dancing sheep is my sweet babe whose pink rosy skin has turned grey and whose blue eyes are sunken. 

I turn my back from the exit and reach for the purel.  

Hubs squirts a generous amount and wipes it on his hands and face. He squirts more and swabs down the car seat, diaper bag, our feverish daughter.

“That’s not good for her immune system,” I say

He shoots me a look. We should not talk.

I sit on the edge of the waiting room couch.

What is that smell?

I glance at my fellow couch-mates with a discerning, critical eye; judging their hygiene habits and realize that smell is me.

My god I stink. I really smell; the smell of fear and body odor. I can no longer hide what my life has become.

What a façade. Yesterday we were in Beaver Creek skiing. We left early because Samantha looked so bad. In desperation I smeared deodorant on my pits, gargled last night’s wine with a little Scope. Smeared a little make up under my eyes.

If you look okay, she will be okay

Cover up covers up everything.

Foundation will strengthen our foundation

As long as my lipstick is refreshed, everything will be okay.

Hubs hands me a Power Bar. “You should eat something.”

I hate Power Bars. I hate everything about them. The chewy texture. The taste that is almost something you recognize but not really. Is that chocolate I taste? No its ass. Even the gold packaging. I hate it all.

I’m not hungry.

I want a coffee. Where’s the coffee machine? This is a hospital. Hospitals run on coffee. Screw coffee I need a bourbon.

I nervously start to rock and bite my fingernails. Hubs takes my hand from my mouth. “This is a hospital.”

I don’t care. Let me be infested with hand, foot and mouth disease, Swine flu, hippo virus, bird flu.  I would lick the floor……just let my daughter be okay.

“Schichtel? Samantha Schichtel?” The nurse called.

“That was fast.” I said to my husband.

“Good insurance,” He mumbles. We hurry past the others who were waiting before us. I try not to meet their eyes.

We file into a small room with a nurse and a computer.

“So, what’s going on with Samantha?” she asks.

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Euphoric

I tend to manage bad news better. Bad news means I need to take action, to fix it, to help, to cook, to bake, to comfort, to process…….

Good news means I just get to revel. Soak. Just let it sink in. I’m trying to soak.

Today I got a text from our dear scientist at Children’s. I have been waiting for this text. I have texted her about this text. We have been waiting, waiting, waiting to hear about an NIH grant that would change the future of our clinic in Colorado. Our initial scores were good, everything looked great, now we wait.

I am such a bad waiter. I want to know now.

Today my wait was over.

We got the grant from the NIH.

A grant that will secure the future of the clinic, a grant that will allow the super smart people who work there to advance research. A grant that says, “Hey Colorado, it’s the NIH. You all have been doing some great things out West based on some money raised with a bike ride. Here’s a chunk more. Now don’t spend it all in one place. And since we are the National Institute of Health, if you come back with solid data, there’s more where that came from.”

Well that just dills my pickle 🙂

Because we did not just stumble on this grant. The very best thing about where we are today is that we have all arrived together. Our patient group raised money. We climbed that stupid Vail pass, our hineys pissed and gasping for air.

Every year enough money to keep things going and research moving forward.

Our doctors, lordy….we have a great team of scientists; a group that has worked together for years. They understand each other and where they want to be. They know our families. We are so grateful to them and them to us.

It is magic. This. In the midst of this god-awful tragic disease, we have created something unique, respectful and magical.

We have created something even more rare than a POLG-1 mutation. See what I did there? Genetic joke.

Nice job dear tribe. Keep fighting the good fight.

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Perhaps it’s not about us

I have a dear friend.

Her sister was brutally murdered when she was 18.

We talk a lot about grief, processing this world, PTSD, and the best way to go forward.

It’s a fun game.

A game usually around a couple glasses of wine, about who’s grief is worse. It is not a game for the light of heart but for those of us who have lost our Loves, we find incredible freedom in being able to talk through grief and trauma.

I personally find solace in the fact that my daughter was sick. We did everything to make sure she had the best possible life. In the end, her body gave out.

To listen to my friend…..random acts of violence, terror for terrors sake, to take a precious life knowing how precious and limited we are in this world, I can’t wrap my head around it.

I really can’t. Which make my conversations with my friend even more interesting.

There is no more intimate, variable, unpredictable emotion than grief.

As a society, we suck at grief. Really, we are the worst. We don’t talk about it, we blame, we hide, we ignore, we prescribe and when we grow tired of those who ‘just cant seem to move on’ – we move on.

And we make loss political.

And alas the complexity of this picture. I will not comment on the judge giving the defendant a hug. I will not comment on ten years. I probably agree with your opinions.

But leave Brandt Jean alone. His hug was not motivated by anything other than grief and the need to connect with others around the death of his brother.

He is 18 years old.

His big brother was shot.

He has to live the rest of his life without this person. This hug was grief motivated; maybe healing motivated, maybe faith motivated. It was not politically motivated.

And because we cant talk about grief and loss as vulnerable people, we turn it into politics. Politics is easier to process than grieving a life without a Love.

I tell my friend often how brave she is to move through this life knowing the horrific things that can happen.

She tells me the same.

We should respect the grieving process. Let a boy mourn his brother. Keep him out of the process. He goes to bed now wondering if he should have hugged that woman; trying to find peace in God. None of that is fair.

And ultimately- he does not need our opinion.

You do not have an iota of how complex grief is until you navigate it. Let a brother do what a brother needs to do. Be grateful and hopeful he continues a path to peace and to conduct change in a place of love, not anger.

For the love of God. Just let him give a hug.

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My Cardiologist doesn’t care about my Migraines

I have the honor of sitting in on a Mitochondrial Support Group every week. I don’t have mitochondrial disease but I have lived with the impact on my family for 15 years. I love this group; it’s honesty, it’s camaraderie. Most of the people who call in are adults with Mito; a very under-served and under-recognized population.

This is a smart group of adults advocating for the best care for a complex disease. I have heard many times that Mito challenges our approach to health care. This group gives a name, a face and a voice to those challenges.

Our lovely, beautiful mitochondria live in our organ and muscle cells. When there is a breakdown in mitochondrial function, the breakdown is system-wide. The brain, the tummy, the heart, the eyes, nerves, muscles…..all are impacted.

And yet, when a Mito patient sees many specialists, for their many issues, that specialist is just focusing on a certain organ system, instead of how the entire body is reacting to this breakdown in energy.

Samantha never cut teeth. In her four years of life, she had two tiny nubs of bottom baby teeth. This never bothered me. She was tube fed, she never had solid foods and I figured her tiny, energy deprived body needed to keep the brain or heart happy. Teeth were a non-issue in our book.

Teeth were a non-issue until we saw dentist. Dentist focus on…..teeth. He proposed that we sedate our toothless beauty, cut into her gums and pull those elusive baby teeth down.

“But why?” I asked.

“Because she doesn’t have teeth.”

“But she doesn’t need them.”

Never tell a dentist someone doesn’t need teeth. It. Rocks. Their. World.

In the end we agreed that sedation for a mito kiddo just to pull down some choppers was a silly idea. To the Dentists’ credit, he is concerned about teeth. When he choose a specialty, they never discussed issues that might impact the entire body…..including teeth.

When discussing this issue today, someone on the call said, “My cardiologist doesn’t care about my migraines.”

The statement was so profound and so true and so dangerous in the world of mitochondria. We have a silo’d medical system where the cardiologist doesn’t really talk to the neurologist, or the pulmonologist, or the gastroenterologist, or the dentist.

This summer I sat in on the UMDF Scientific Conference. The key note speaker open the session by saying; “We can no longer think Anatomy, we have to think energy.”

I loved this statement and agree with it 100%. And since migraines can be a vascular issue and are related to heart disease and stroke, maybe we should care about the relationship between the two.

This is not to criticize the medical community. Doctors, PA’s, nurses and their teams are doing the best they can with limited time. But after hearing this smart group of advocates, trying to be champions, managers and coordinators of their care, we need to rethink clinical care for complex, multi-system issues.

Otherwise we are just pulling teeth.

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It Cannot End Today

This week found me in San Diego….which was awesome and beautiful and lovely. But more importantly, I was there for the Global Genes Rare Patient Advocacy Summit.

Turns out, rare is not so rare. 1,000 beautiful souls gathered to make our rare known.

Rare people are lovely. I already suspected this but there is nothing more welcoming than sitting on a shuttle and conversing about which genetic mutation you carry and why you are here.

Rare is resilient. I listened to many talk about loss; loss of their Loves and loss of their own normal. I listened to Ono Faber, Founder of a company called RDMD. Four years ago, he developed a tumor on his left hearing nerve, and another tumor on his spine, and another and another. Being an entrepreneur and a man who loved to solve problems, he had his tumor biopsied and invited researchers to his tumor’s ‘hack-a-thon’ to determine the cause of these tumors.

Those hackers dug right in and found a mutation in the NF2 gene which caused a condition called Neurofibermatosis- he is one in 30,000 with this deviation.

I want a genetic tumor hack-a-thon.

But I am not a hacker, or an entrepreneur, or a doctor, or….or….or.

On the first day I sat in a session sponsored by Courageous Parents Network. It started with the question, ‘Why are you here?’

I wrote down my answers:

  • My family: I am here for Samantha, I am here for Jack, I am here for Ryan
  • My Tribe: I am here for you- our Mitochondrial Community
  • My future Mitochondrial Community- You who I don’t know yet- those we can help to make their journey less painful
  • I am here because I want to change this outcome

I sat in a session hosted by The Two Disabled Dudes- check out their podcast. The Executive Director of Team Telomere- said the following, “I want to make today as good as it can be for as many people as I can.”

She lives with the mission to make more days available.

To make more days available.

That is what I want. I want you to have more days. And for those days to be as good as possible. I want more days, I wanted more days.

You have read the posts this week. They have been hard and heartbreaking and beautiful and hopeful. And the concept of cure sometimes is so overwhelming and seems so out of reach. We live in the fear of our Littles, our Loves and ourselves that the cure might not come in time.

The fear is real, and palpable and we have seen that fear become a reality too many times. Rare can be littered with fear.

But I also learned this week that Rare is collaborative. I met many brilliant, driven, hopeful people who have paved a little trail for us and are willing to share the map and provide a compass.

I hope you will join me for the hike.

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Be Mighty- Our Patients are Waiting

This quote is not mine but I love it.

I am going to steal it for every single mitochondrial presentation. For our doctors, for our researchers, for our government, for you….please…..be mighty….be bold……we are waiting.

Friday found me here:

Discussing this:

I invite you to read the caveat on the bottom of the poster ‘Given the complexities of primary mitochondrial diseases, and by extension the difficulty of designing informative clinical trials in this group of rare diseases, FDA is organizing a scientific symposium with the goal of bringing together academic physicians, FDA regulatory experts, patient advocates, and other interested stakeholders to exchange ideas and advance drug development in this challenging field.’

Oofda.

When the FDA puts this in print, our call to be mighty is mighty.

I pulled up on Friday in my Uber…..just a simple English major from Colorado…… with our super-smart Mito experts and the frickin’ FDA.

Well butter my biscuit and call me for breakfast.

Here’s the skinny; you Mito folks we have an audience.

We have an ear of the FDA.

Thank you to the UMDF, Stealth BioTherapeutics, MitoAction, MDA, everyone in this space, thank you for promoting our ear.

Clinical trials within the mitochondrial space are not easy. Mitochondrial diseases spread among 37 MtDNA genes and over 250 nuclear. Our family carries a mutated POLG-1 gene, which is a nuclear inheritance but the presentation even among our family is different.

Every night Hubs would rub Sammers head and say ‘good night, Samantha, keep fighting the good fight.’

We lost that fight.

I hate that we lost that fight.

When the FDA started talking about Pediatric testing and the ethic barriers to certain tests, I got up and talked. I talked about when Samantha was diagnosed with Infantile Spasms; when her poor precious brain was seizing 90% of the day and the only med that could help help her was Vigabatrin. And when I found out Vigabatrin was not FDA approved because it was known to inhibit peripheral vision.

I didn’t give two poops about her peripheral vision. Stop the seizures.

Stop the seizures.

Stop the seizures.

We paid out of pocket from Canada for Vigabatrin and for a brief moment, I lived the life of a Vigabatrin drug lord because it was approved in the States.

The FDA needed to know my life.

The FDA needs to know your life.

They need to know that you would sacrifice peripheral vision to stop the seizures. That your life is so far from normal, you would give up what seems normal for a bit of normal.

My challenge to you Mitochondrial community.

Be Mighty

Please be Mighty.

Lets talk about our story. We talk about a Natural History study, mapping out genetics and physiology. What about a person study? Who were you before your mitochondrial disease? Before your child’s mitochondrial disease? We now have an ear to the FDA.

Be fearless, be bold, know you have a voice.

We have nothing to lose.

Be Mighty.

I will take your mitochondrial story: heather.schichtel@gmail.com

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Do You Hear the People Sing?

It’s Friday evening.

I’m always hesitant to post on Friday. It reveals the fact that I’m not out at a hip bar drinking appletini’s but instead sitting in my study contemplating the meaning of life.

Alas, I am a tad nerdy.

But also tonight mind and body demand a little downtime. A little time to think about how amazing the last week has been and everything we have accomplished.

Last weekend our Summit for Samantha team of 61 riders rode over 130 miles and raised almost $130,000 for mitochondrial research here in Colorado. In our ten years as a tenacious team, we have raised a cumulative $893,000 for our mito clinic.

Next year I’m calling a million. A million dollars for mitochondrial disease.

I would be lying if I said this week doesn’t knock me on my hiney. I have gone radio silent on my team. It took me three days to unload my car. I am now staring at a pile of stinky rider gear in my study.

Stinky.

But my goodness, its awesome. And my goodness, I am so proud of what every, single, person has done to raise this team up into the ten year success it is. We are number 5 in overall fundraising for the ride; number five with teams raising awareness for cancer research, heart defects and overall hospital support. These are known, important causes that are easy to rally behind because the general population knows about them. Here we are, number five for mitochondrial disease. Mito-what-drial?

This is not an easy ride. Vail Pass after 60 miles of riding is brutal; your head plays games and your legs plead for you to stop. I turned on my Pandora about two miles from the top. The station queue’d was Hamilton but a song from Les Miserables was playing…..

Do you hear the people sing?
Singing the songs of angry men?
It is the music of the people
Who will not be slaves again!
When the beating of your heart
Echoes the beating of the drums
There is a life about to start
When tomorrow comes!

I pushed along to the cadence but thinking to myself, I’m not angry.

But then my other self called bullshit on that and declared I clearly had too many shot blocks.

Of course there are times when I’m angry. When we should not have to raise money for mitochondrial disease. When I should not know so many who have lost their Littles.

And when I realized that, climbing up Vail Pass, the beating of my heart echoed the beating of the drums…..

And I started to cry.

Two miles from the top of Vail Pass on your bike is a really awful place to cry. I told myself this but myself does not listen and started to cry harder; snot, sweat and tears.

This year we arranged for a beer stop at the top of Vail Pass because, well, beer. My friend Paula coordinated the stop, rallied volunteers and dressed as a giant banana to keep us going.

No really. A banana.

As I got to the top, I was greeted by my team chanting “Heather! Heather! Heather!” I was handed a cold Summer Shandy, a Kleenex and felt the relief that all I had to do was ride down into Copper.

How can I possibly be angry?

You all make it IMPOSSIBLE for me to be angry.

And not that it does not well up at times. And not that I don’t ugly cry at times. But I’ll tell ya, 61 riders, $130,000, a Summer Shandy and a dancing banana…..ya’ll are good people.

Thank you for another amazing year.

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Letter to my team about your money

Hello Very Best Donors!

This is the time of year when I un-apologetically ask you for donations to my bike ride. I thank you for listening, donating, supporting, cheering. Y’all are awesome.

This is our tenth year riding. I am amazed by what this team has accomplished. They have changed how we diagnose and treat mitochondrial disease in the Rocky Mountain area. I not only ask this group to ride 150 miles up three mountain passes, I ask that they raise over $500. Here is my letter to my team about what they support and the very important work they do.

You can support them here:

Hello Very Best Team!

I hope you stayed dry and managed to find a break in the weather. The clouds made me extraordinarily lazy. I made soup.

A couple of you have asked what is new in the clinic. Since you are fundraising for the clinic, this is an great question and one that I hope I can answer in a couple paragraphs.

Those who have ridden with us know these facts:

  1. We are the only mitochondrial clinic serving the Rocky Mountain area. Our team has been the sole supporter of that clinic
  2. We were part of an international clinical trial. One of 33 sites worldwide. This is a phase three trial that should get FDA approval by the end of the year
  3. Our clinic sees both children and adults in the area
  4. We provide ubiquinol, a supplement not covered by insurance, free of charge to families being seen by Children’s
  5. We recently became part of the Mitochondrial network of care. There are 23 sites nationwide, only 8 west of the Mississippi

This is all because of this team and their fundraising efforts.

But here is what your amazing researchers are doing in the lab. Our team has been focused on diagnosing and finding potential therapies by working with skin cells.

Skin cells? Why skin cells?

Mitochondrial thrive in organs that are tough to get to; the brain, the heart, the liver, muscle. Many times a mito diagnosis had to be from a muscle or liver biopsy which is very evasive especially for our medically fragile population. These cells are finicky, hard to keep alive in a laboratory and are of limited supply. Skin cells however are everywhere! I think I just shed some right now! I know, ew but you get the picture and why we would want to work with a more user-friendly cell.

When a suspected mito patient comes to Children’s, a non-painful skin biopsy is taken and researched in  our lab. Our researchers are now pros at creating an environment where the mitochondria in the skin cells are ‘stressed’; usually by monitoring oxygen intake. From that point, they can look at where in respiratory chain does the breakdown happen, which makes diagnosis faster.

What is even more promising; from that methodology, the team can try potential treatments to see how the mitochondria react. This research is getting international attention. Dr. VanHove found a series of genes that react and respond positively to amino acid therapy. You can access the article here. Please note the reference to our bike team at the end:  https://eurekalert.org/pub_releases/2018-10/uoca-cas100318.php

I know this is a lot to put into a fundraising letter. I might just tell your donors that they are supporting international break through research…..and mean it….100%

I hope this helps! You are all making a difference.

Happy Sunday!

Heather

Life Today 2015 to Present

June 30

Sigh.

Today just cannot pass without talking about it. I feel it in my energy. I feel it in the way Hubs and I move around each other. We are sad. Today should be different but it’s not.

I hesitate posting about Jack. I never heard him cry, never knew the color of his eyes, but I knew him. And I love him. And he demands his day.

Fourteen years

That’s a lot of life.

And yet the timing of that day passes through me every year……..the minute I sat in the waiting room, the second I found out, the moment I called Hubs.

I hesitate to post about Jack because it is so very sad. Nothing is more devastating than a silent delivery room.

Tomorrow we will toast to our First. I will place the frog ring on the creme’ brulee. The waiter will ask what we are celebrating and we will awkwardly look at each other and come up with a lame answer.

But to tonight I will miss a person who should have been here.

Life Today 2015 to Present

Where Everybody Knows Your Name

United flight 403 is taking me back to Colorado. Back to real life; back to a place where distinctions of phenotype and genotype are not topics of debate, back to where no one really talks about the phenomenon of allelic hetrogeneity.

I am ready to be home. I am also grateful for these four hours, 30,000 feet above the ground. I need this time in the clouds to process the week.

We are a rare community; a community that carries deviations shared by only thousands (or hundreds) in the world, a community that must explain themselves daily, a community that feels ignored and is oftentimes misunderstood. For three days in the garden level of the Hilton however, we are not so rare. We are not the minority. We can discuss our genetic anomalies to a table that shares similar mutations.

This is not a hard week for me. This is a week where I can talk about our journey, our daughter and hypsarrhythmia without sad eyes. I can share stories. “The ketogenic diet work for you? It worked for us too!” 

We are surrounded by amazing specialists who work tirelessly for this cause.; intelligent, thoughtful caregivers. We honored one of our Mito Specialists at the dinner last night, Dr. Bruce Cohen. As we all stood in applause I started to cry. This is an awful disease that steals dreams, breaks families but I felt so grateful to be in this room.

Our very own Dr. Van Hove came up to me and gave me hug.

“Thank you so much Johan for all you have done for our family.”

He looked right back and me. “Thank you for supporting what we do for these families. I would not be here without the work you and Maria are doing.”

I put that moment in my pocket and will take it out anytime I feel misunderstood in this journey.

I’ve been a mushy grateful, reflective tub of goo for the last 24 hours. United flight 403 is taking me home. I sit somewhere between earth and sky. I think I might stay here a little while.

blog, home, Life Today

If we were Vampires

Hubs and I spent the last week in Vermont and upstate New York with dear friends. A friends daughter was getting married and we were lucky enough to attend.

Situated in the Green Mountains lies the estate of Abraham Lincoln’s only child to live into adulthood; Robert Lincoln. The grounds are lovely; the peonies were just about to bloom and miles of green lush forest surrounded us.

The groom turned his back when the bridal procession started.  As his bride approached, winding gracefully through the gardens, he turned and looked at her and started to cry.

And so I cried.

I love love. Love is pretty stinkin’ awesome.

Hubs was lookin’ mighty fine in his tux. I was all spanxed up. We snapped a photo in the peonies.

“We’re looking older,” he said.

Sigh. We are. He took my hand and his fingers traced the back; age spots, veins and fingers that slip so easily into his hand.

We aren’t so old. But we are old enough now to know that this time is fleeting. Views are to be taken in. Hands are to be held. Good friends inhaled. Moments sipped until the glass is dry and the mind is tipsy with happiness.

We went on to visit another dear couple in New York. They have lived a lot of life with us. After dinner we sipped whiskey next to the fire. I had a Great Dane balanced in my lap as I listened to the rain. His tail thumped my leg when I stopped petting his ears.

We talked about the wedding and how love changes as life happens.

And then our friends played us this song.

And I cried again- grateful cry about the irony of life, good sipping whiskey, a groom and his bride, a dog on your lap and a hubs whose hand slips around my fingers.

If we were vampires and death was a joke
We’d go out on the sidewalk and smoke
And laugh at all the lovers and their plans
I wouldn’t feel the need to hold your hand
Maybe time running out is a gift
I’ll work hard ’til the end of my shift
And give you every second I can find
And hope it isn’t me who’s left behind

blog, home, Life Today, Nitty Gritty Dirty Grief, The Samantha Years

Does trauma gives you a hall pass? Someone should tell the hall monitor

I posted something cryptic on Facebook Saturday. It caught a lot of attention from my tribe but it really wasn’t a big deal….

Nothing like seizures, mitochondrial strokes or premature death.

I joke because I can.

Because I have survived these things.

I watched the EEG of my daughter explode. I have held hands in the PICU, I looked at a tiny pink casket, our tribe has buried our Littles before their time. I have gone toe to toe with a PICU doc and won.

I am a badass. I run with Badasses; I am proud of the strong people who have held me up and who I have held.

And yet.

At times.

Silly life shit takes hold of me. Suffocating. Like that stupid snake in the Jungle Book. It starts at my ankles, moves up my knees, my tummy, constricts my heart and looks me straight in the eyes. Sings to me and lulls me into a sense of doubt, confusion and negativity. Trust in me…..just in me….

I hate it.

Because silly shit is not worth suffocating over. I buried two babies and still managed to put my pants on and brush my teeth.

Silly shit is not worth it.

But I think all of us who have suffered trauma deal with this; cars cut us off, people are jerks, friends disappoint us, egos get in the way, Facebook pisses us off. These are not life and death situations. But in my mind, I expect the inconsequential to roll off my back and when it does not, it rattles me more.

I could place a cath in 10 seconds, deliver rectal Valium and I never gave it a thought. Why does this rattle me?

Perhaps this is the evolving trauma process…..what do we do after trauma when real life makes us crazy.

After we put our pants on, brush our teeth, go to work, cross the street….what happens next?

And really, I don’t post this as cause for alarm.

Because cause for alarm is another issue. I sometimes feel us going through all of this are afraid to post our struggles, because we don’t want to cause alarm. We are okay, really. We cry in ours cars, we get sad but we are here, really we want nothing more than to relish in joy and live our lives.

So a question for all of us and real life; what are your tools? What are your tricks for dealing with the silly shit? I invite all ideas J

Happy Spring!

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YOPP!

“We’ve GOT to make noises in greater amounts! So open your mouth lads! For every voice counts!”

Ah, thank you Dr. Seuss.

Rare diseases are tough. And made even more challenging when one constantly has to explain the severity of mitochondrial disease.

Energy…..tired…..

But so tired that its hard to move your jaw up and down when chewing food? Or when you walk up a flight of stairs, you feel like your feet are made of concrete?

I do not know this tired. I have seen this tired. And even more extreme, I have seen how a brain that is tired can turn against itself, creating chaos in the form of seizures.

Energy is everything. Energy keeps us alive.

Last Friday I got to sit in a room with the FDA and talk about this energy disease. I sat with parents of impacted kiddos, adults with onset mitochondrial disease and caregivers.

And for a day we were not rare. We were a voice. A collective, impassioned, tired, loud, committed voice. We sat and listened to stories told by our peers, nodded in agreement because not many know the life of mitochondrial disease; the severity, the fear, the unknown of a complex disease.

For a day we were heard; our voices recorded and hopefully taken somewhere within the walls of the FDA where drugs for other diseases could be approved for mitochondrial function, where drugs for orphan diseases could be fast-tracked through approval and supplements could be covered by insurance.

We had an ear for a day.

“Thus he spoke when he climbed and when he got to the top, the lad cleared his throat and he shouted out YOPP!”

My our YOPPs be heard.

 

Life Today

Eat

I love to cook. I find it calming and therapeutic to be in the kitchen; to chop, season, watch a pad of butter sizzle in the pan and slowly brown. Cooking demands I be here, present, otherwise pots boil over and the bread is burned.

Last month my lovely SIL and I went to New York for a weekend. SIL has a dear friend in NYC who just happens to perform on broadway, knows just about everyone, the amazing places to go and how to get into those amazing places. I fell in love with SIL’s friend and asked him about a bazillion times if he would be my NYC Bestie for Life.

My new Bestie laughed, shrugged off my proposal and almost as a tease recommended we go to a restaurant in Brooklyn called Misi. Which was booked until next 4th of July but it was okay because he knows the owner and could get us in at 7:30.

I thought this was lovely but who goes from NYC to Brooklyn, right???? We nabbed a disgruntled taxi driver and crossed the bridge.

And I fell in love. For the second time that weekend.

Misi was busy, bustling with an air of ‘this is not manhattan”. There were pasta chefs carrying trays of freshly made pasta from their secret pasta making room to the kitchen. Trays of occhi, pappardelle and bottarga, all looking like little delicious pasta pillows nestled safely in their little trays.

And I thought, ‘This restaurant loves me. Of course they love me because they have prepared this beautiful occhi. Just for me.’

We sipped martini’s until we were lead to our seat at the counter, right across from the kitchen.

And I fell in love. For the third time that weekend

I fell in love with the pasta lady whose job was to cook the pasta to al dente’ perfection. She moved the tagliatelle from a salted bubbly bath to a cooler little pool with confidence.  She tested the noodly perfection of every dish that lapped in her pasta spa.

I watched in awe and finally said to her, “I love how you love these noodles” 

Yes, it’s not something you say everyday, but when you compliment someone on their noodles, they feel the love.

It goes without saying that our meal was divine. It was a gift; chickpea pappardelle melted in my mouth until I danced in my chair and exclaimed, ‘this is so good!!!!’

The noodle lady gave me a wink.

The gift of a meal.

I have always moved through my kitchen with confidence but now, every once in a while, as I saute’ my garlic or chop an onion, I remind myself to love my edible creation as much as my pasta crush loved her oochi.

 

 

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Shiny New Penny- Week One Check In

New Years check in week one.

Whew! I developed some tarnish. And after only a week. So much so I had to go back to last week to see what I promised myself. My goodness! Look at me last week, all bright and shiny.

Like anything that takes work, reminders and repolishing are important.

Those who have followed my story know that my beautiful brother has been deeply impacted by mitochondrial disease. Those who know my brother know what a great skier he is and how much he covets his space in the mountains. Brother has three boys; my lovely and active nephews.

Me, having spent my 20’s teaching skiing, I have vowed to teach those nephews how to ski.

In the process, I have discovered that skiing with young children is complex and can be a tad stressful.

On Thursday I met this complex, lovely crew at the park-n-ride. I stuffed my skis and boots in the back of the minivan, jumped in the driver’s seat and we were off.

That’s right. Minivan.

Loveland Valley was a little nutty for a Thursday but all was good because Brother has a a disabled parking placard.

Brother has this because he needs it.

Did I mention that Loveland was nutty for a Thursday?

I pull into the parking lot with the ginormous minivan to find all of the disabled spots taken.

Queue verbal reminder…….I am a shiny new penny, I am a shiny new penny, my words create my reality, my words create my reality. 

I have found that nutty times can lead to compromised decisions for people. Decisions such as ‘I am an able bodied person but I can park in the disabled spot for 5 minutes while I unload gear. No one will notice’

Having used a placard and observed this behavior, I automatically doubt the validity of everyone in those spots. Yes, this is a weakness of mine and something I am working on as a shiny new penny.

So, being slightly stressed in the ginormous minivan and given my history of doubt, I roll down my window and ask a young dad unloading his SUV in a disabled spot if he is parking there for the day.

“Sir? Excuse me. Are you staying in that spot?”

No answer.

“Sir?” Perhaps he didn’t hear me. Perhaps I should talk louder.

“Hi! Are you parking here?” 

Mr. Sir turns to me with the stink eye and a gruff tone. “I have told you three times I’m an staying here.”

Shiny new penny, shiny new penny, shiny new penny!

“Oh. I didn’t hear you.”

“I told you……three times”

And a million snarky responses came to my head, a gazillion arguments. But instead I yelled in an indignant tone, “Well, you just have a nice day!!!!” 

That’s go to hell in shiny new penny speak.

Another car rolled out of a spot and we were able to secure our space. Boys tumbled out of the van, Brother navigated variable terrain and my dad joked about the meaning of have a nice day.

But I was bothered by this interaction.

The boys skied and mastered their perfect pizza wedge. Brother did great but needed to return mid-day to our house-on-wheels to take a nap. Stupid mito.

We finished with a celebratory hot chocolate….and maybe a beer.

As we packed back up, gathered stray gloves and stinky ski socks, I saw Mr. Sir doing the same for his family.

I walked over to him.

“Hi. Listen, I am really sorry. I didn’t mean to insinuate anything or insult you. I was just looking for…….”

He cut me off, “yeah, I’m really sorry too.”

“Things get a little crazy with these spots.”

He laughed. “Yes, yes they do.”

I shook his hand, “Thank you,” I said, “Have a good day.”

And this time I meant it.

Week one under the belt.

 

 

 

 

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Well Hello New Year

I love this day. I really do. New Year’s comes in like a bright shiny penny, full of expectations and hope. Last year drifts off into the sunset leaving me with reflection. What could I have done better? What could have been so much worse?

We are settled into our house on the 20 this year. There are a bazillion projects that need to be completed which will take a bazillion years. But I love this place that Hubs built. And I love him for building this place.

And like our house on the 20, I feel more settled.

And I shudder as I write that- I really do. Years of trauma has taught me to brace for what tragedy might be next. I state the words, “We’re okay, we’re good,” and then make a cringy face and search around as though the next tragedy is lurking in the corner.

Perhaps it is.

Perhaps this is something to work on in 2019.

There were parts of 2018 that were fraught with doubt- more so than other years. Maybe because I didn’t have a move, a sick child, or was silly sick with grief, that left room for doubt to move on in.

Ironic, huh?

I think during those doubtful times, you start to believe lies that you tell yourself; ‘I’m not good enough, I’m not smart enough, I should work harder, why are my pants so tight?’

I am letting go of my lies.

I started my lie purge in September. I am purging old lies from my thought process. This purging will continue through the new year. I am removing the words from my head.

My words create my reality. I want a really awesome, amazing reality; not a pants too tight reality.

I will turn 48 this month. When I was 20, 48 sounded old. Heck, 48 still sounds old.

It sounds old, but it doesn’t feel old.

It feels promising. I see this promise in some of my friends, friends who a venturing out with their own careers, embracing health goals, taking this notion of living a gracious life seriously.

Seriously because this is work. It takes work to dispel your lies. It takes work to not engage in drama. It takes work to live your best life and believe in your awesome, amazing reality.

What is my best life? Heck if I know but I feel like if I talk about it more, it might start to reveal itself. I might even Pinterest a vision board…..take myself on down to Michaels for a glue gun.

So that’s me today. New shiny penny. I hope you feel shiny today too.

Happy New Year.

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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.

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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

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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.

blog, home, Life Today

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

 

 

 

 

blog, Life Today

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 🙂

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Gotta Do More. Gotta Be More.

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

Guinness World Record Run in a Battery Costume for Mitochondrial Disease

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.

 

 

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Miracles… and a vortex

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.

 

 

 

 

Life Today

A New Place

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.

 

The Samantha Years

Serenity Now!

It’s been a hell of a day.

That’s right…..I skipped ‘quite a day’…..

Passed over ‘heck of a day’….

And went straight to hell.

The good news is (knock on wood, knock on wood) it’s day two and no seizures.

The bad news is Samantha still has pancreatitis. Your pancreas secretes an enzyme called lipase. Normal lipase levels range from 10 to 150. Samantha’s lipase is 476; meaning her pancreas is working overtime and is still inflamed.

Pancreatitis is very painful and the only thing you can really do is give your belly a rest. We ‘rested’ her system a couple days ago but only for 12 hours. As soon as we started feeding her again, her levels climbed up.

So she’s back on I.V. fluids and the keto wean is on hold.

Samantha in extreme pain is just awful. She writhes, cries and can’t tell you what’s wrong. Today she has gone from sleeping, to crying, to sleeping, to crying. I am hoping this belly rest will help.

But again, the pancreatitis is a result of the diet so I do feel we’re doing the right thing in taking her off.

Hubby could not make it out of Budapest before the ash shut the airport down. Therefore he and a buddy hired a car and drove from Budapest to Rome….one of the only airports still operating in Europe.

Ah….the 12 hour scenic tour through Hungary, Austria and Italy. He should be driving through the gates of Rome as I type.

If all goes well, he will leave tomorrow morning, onto Boston and home tomorrow night. If Rome closes in the next 12 hours, he will probably take a boat to Northern Africa and fly out from there in the next couple days.

But to quote Scarlett O’hara, “I won’t think about that now. I’ll think about that tomorrow.”