Last night Hubs and I opened a bottle of wine and toasted to the end of our July.

“Well”, he said, “We’ve had worse Julys.”

This is funny…and sad. I dread July. This one month marks the births and deaths of both kiddos…..all wrapped up in a poopy 31 days. Kinda like Baskin Robbins 31 flavors of ice cream. But awful. And no sprinkles.

I have never hidden the difficulty of this month. Not only for me but in trying to honor my Hubs. Here is how our July usually goes………

Me: “This month is awful and hard and I need to surround myself with as many people who support my cause as possible.”

Hubs: “This month is awful and hard and I need to surround myself with me. And maybe my wife….if she is not surrounded by other people. But she usually is….so just me.”

July is the month we lost both Jack and Samantha. It is also the month that our team of 60 get together and climb 180 miles for a cause embedded in my soul. My grief has always been diluted by my miles, and my sweat, and your hugs, and cowbell.

I missed my diluted version of July.

Full concentrate grief July is a lot to manage.

Grief is a hard thing to anticipate. Something that seemed okay last year can sting the next. And on the flip side, an issue that was so important last July can be forgotten. That’s the crazy thing about grief.

And the statement above? Only applies to you. Everyone else can be having their very own Grief showdown…..and you might not even know it until its high noon and you’re standing in front of the General store.

I do think we all survived….by the hair of our chinny chin chins (which might be longer because of work-from-home policies?) but we did survive. The magnitude of how hard the weekend was just reminds me….be kind, if it doesn’t matter let it go, Love your Loves, and be cognizant of another’s battle. We are all missing our people. Give Grace.

And with that, Adios July 2020, you Mother F#cker.

Ghostbusters Two was released in 1989 and it did okay according to Rotten Tomatoes.

It was not the original Ghostbusters- the Staypuff Marshmellow Man made no appearance, the tone was a little more somber and there was Vigo.

Vigo the Destroyer, a cruel leader from the 1500’s who comes to life in a painting and tries to possess a baby named Oscar so that he can rule again in the 21st century.

I do have a point to this post….but first, I have to do this…..because it’s my blog and I find it hilarious…..

Uncanny! Hold please while I chuckle for a second.

I’m sorry. According to polls, I have offended about 30% of you. But it’s my blog and you can walk away. Vigo the destroyer was really not the point of all of this.

Instead I would like to talk about Psychomagnatheric Slimeflow. Stupid movies pop in my head all the time. In this stupid movie, the sewers of NYC are flowing with this negative slime. This slime gives Vigo power and starts to take a community down.

Psychomagnatheric Slimeflow has infiltrated our country.

I talk to my friends, my family and my tribe. We talk about gratitude, being thankful and fortunate….we do this at a social distance with cute masks.

But underneath, for all of us, is an undercurrent. An undercurrent that feeds uncertainty and anger.

“Do I send my kids to school or see my Grandma?”

“Will I find a job?”

“Will I be able to feed my family this month?”

We live with an undercurrent of uncertainty. It makes us quick to respond, quick to anger, quick to draw conculsions.

I had a bad weekend. It was a double-decker Psychomagnatheric Slimeflow Sundae.

A friend asked what I was doing for self-care. I love this question.

Ask this question. Ask it often to your tribe that you can’t always see.

What are you doing to take care of yourself?

Because that is all I can do……that is all you can do. Take care of yourself.

“I am swimming.” I answered unexpectedly. I get in cold, clean, crystal, chlorinated water and I listen to my breath. I do it again when I have the opportunity. That is my antivenom. What is yours?

I have felt the Psychomagnatheric Slimeflow creep into my veins, my house, my tribe. I have been short with others and been on the receiving end.

Do not discredit what this undercurrent can do at the same time, do not discredit your ability to rise above it; recognize it, protect yourself, move on.

And never, ever cross the streams.

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.