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.

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.

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.

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.

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.

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.

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

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.

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.

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!