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!

Nitty Gritty Dirty Grief

Lean into the Discomfort

I got this saying from an excellent Ted talk by Brene Brown about vulnerability. If you haven’t seen it, go watch! If you have, go watch again!

I have the words….Lean into the Discomfort on a sticky at work. I try to follow this when the world seems uncomfortable…itchy. Which at times seems often. I am not a fan of leaning into the discomfort. I like fleecy pants, teddy bears and tomato soup.

I really don’t like tomato soup at all but I thought it fit in well with what is comfortable.

Sadness is uncomfortable. Grief is even more so. I recently met a fellow writer who introduced herself as a Grief Writer. I applauded her honesty. When we spoke she said “I’m trying to write about things more positive……maybe move away from my loss.”

I’m not sure how NOT to write about grief and loss

I missed the Nationwide Commercial during the Superbowl but I caught the uproar later….you know….the one about the child dying? Ironically, I missed it because I was having an in depth conversation with a new friend about why we didn’t have kids. I watched it later and thought….huh, my life is that Nationwide Commercial. 

The Nationwide Commercial was referred to as a Superbowl Buzz Kill. And I get it… I get why..I really do.


I was a buzz kill once in college. I threw up on a boyfriend’s Boston U. sweatshirt…..I can’t look at Miller Genuine Draft the same.


We broke up over that sweatshirt. Perhaps it was for the best.

But when we use the words Buzz Kill…..we tell the world we don’t want to talk about what is sad, or tragic. It kills our buzz.

Just give us cute puppies in love with a horse. By the way? That relationship with the puppy and the horse will never work out…..buzz kill. 

My cousin who I mentioned in my last post died on Friday. ALS is a rotten, rat bastard of a disease. I found myself reeling from the not-so-distance death of my friend Heather, my cousin and the topper? my Great Aunt died two days before. Good Lord


I became a tad recluse, moody and perhaps (?) a tad depressed…..buzz….kill…..I snapped one day at Hubs.

“I’m sorry, I said. This is all too much.” He took me in his arms

“it’s awful.” he said. 


And together, we both leaned into the discomfort.


We were skiing when my cousin died. It was a Bluebird day at Crested Butte. When we got the news, I insisted we stop, have a beer and toast to a life gone too soon. I talked about it through the weekend….I allowed myself to process and be sad. And my friends leaned in with me. Asked questions, toasted, reaffirmed my belief that ALS is a rat bastard.


Everyday, those of us on the outskirts of what is normal life lean into the discomfort.

The comfort lies in who we can talk to about it….our connections, our relationships, our trust…..to process without being a buzz kill.

And now I’m off….to go watch that Budweiser puppy commercial

Nitty Gritty Dirty Grief

Preparation

In the last two months, two of my Loves have been told they need to prepare for the imminent reality that they will die.

It’s okay if you want to stop reading now…..no judging.

The worst is that they are young, Moms to Littles…..little Littles who still need their Mamas.

I laugh at that last statement. I am 44 and still need my Mama.

I sat today with my cousin as a vent pumps air into her lungs. Her adorable Little Little sat cozyed up at the foot of her wheelchair. Little played with a plastic butterfly she and her sister made to decorate the window. She would set it on her nose, her mom’s foot, her head. 

You must prepare

Some people are good at preparation; they organize, schedule, set meetings before a meeting, post meetings to discuss a meeting. 

I am no good at preparation. I am more of the ‘I know you’ll love me when you meet me and we will fly by the seat of our pants!’

Perhaps I will be standing at the Pearly Gates, looking for my overnight bag….St. Peter will say ‘Did you bring anything?’ Pack a bag?’

I will sheepishly say I forgot my bag and can I go back and retrieve it? I will only be a minute, I forgot my razor. 

Perhaps there is no shaving of the legs in heaven. 

According to some, I might be going the other way, in which case, there would be continuous shaving of the legs; without soap…and a dull razor. 

I really don’t mean to make light of this. Aside from Samantha and Jack, nothing has made our precious time on this earth more real than these last two months and these two Mamas. Granted, the circumstances of our life has made me more comfortable around death but nothing can deny the fact that this is horribly, tragically unfair. And I find these women incredibly brave. 

I do not know how would I prepare. I do love life. Life is fun. I love wine and chocolate and cheese and kisses and a belly laugh. Perhaps I would pack these all with me in my preparation. 

My friend Heather, fellow lover of life and fellow lover of wine took a sip of a fine Cabernet on her last Thanksgiving and spit it out. It no longer tasted good- it no longer mixed with chemo. 

Maybe that was when is was okay to prepare? 

I personally, have always used wine as a gauge to life 🙂 

My grandfather, lover of many things naughty claimed he would rather die than give up his cigars. I don’t really think he meant it but it left great dramatic effect. He too loved life, or maybe creating a ruckus. 


Perhaps the preparation is for us. The ones left behind. We talk of closure and reconciliation; preparation for a journey someone else will take. 

What would be packed in our life satchel? 

I drove back from my visit with my cousin with my brother and dad. The sun set over a pink sky. My dad asked a funny question. “where will you be the second day you die?” 

My answer is easy, “I will be with my children.” 

Where? 

Doesn’t matter….I probably won’t be prepared and without a razor. But maybe there might be something as good as wine and kisses and a good belly laugh. 

To my Mamas and their Littles. 

Nitty Gritty Dirty Grief

Because Nothing Rhymes with Teen

I take issue with this whole decade- the entire ten years. 

Because nothing rhymes with Teen. 

Except keen and mean and bean. 

How am I supposed to find a meaningful mantra based on those words? 

For instance, I am about to turn 44. My 44 mantra is “44! Shut the front door!” 

Because 44 is on the verge of being an adult which is unbelievable to me. How could I possibly be an adult. Hence my surprise…..“Shut the front door!” 

And it’s cute, because it rhymes, or maybe it’s not cute but it’s my thing. 

43 was “43, what am I supposed to be?” 

I am still looking to answer that question so if you know and would like to fill me in, that would be great. 

But 2015? “2015 is gonna be keen!” 

No. 

“No one should be mean during 2015.” 

Nah. 

And this goes on for a whole decade! No wonder I have felt out of sorts; looking for answers, cleansing, meditating, wandering, searching….I have no yearly mantra. 

Christmas, New Years and my Birthday; they all come within three weeks of each other; leaving me with a holiday hang-over. I have told my parents they should have considered better family planning to make me a content, well rounded, holiday-balanced person. 

This falls upon deaf ears. 

2015 is gonna be keen! 

We opened the door on 2014, let the old year out and the new year in. We do this every year- leave the front door open for a couple minutes to allow the changing of the guards.  This year it was really a good thing, we were in a condo with three sweaty boys, we needed a little fresh air. 

365 days is a long time- a lot of living happens in those days; we grieve, we laugh, we fall in love, we give birth, people die, we say hello, we say goodbye. We live. 

I was in yoga the other day. It’s hot yoga and I sweat like a man. At the end of the class, our teacher gives us a cold cloth soaked in lavender water.  I love this part of class and I wait for that cool cloth like a monkey waits for a banana, love that part of class. Everything is gonna be alright, I have a cool lavender cloth to make me smell good and mop up my man sweat . 

It is at this time, after I’m all stretchy and stinky, that our teacher says something profound. This week it was about the new year….If we knew everything that was going to happen, we wouldn’t need to experience it. There would be nothing to learn, explore, or gain. So often it is the surprises of the moments and hours, the unexpected twists and turns that give our lives meaning to our journey and make our lessons come alive. 

The New Year comes in all fresh and clean, like that lavender cloth on our tired heads. But who we are is not made up in the sum of 365 days- it is moment by moment, hours, laughs, tears, turns that we forget and turns that forever impact our lives. 

And with some research, I did find my mantra. It is unassuming and leaves no expectations. In fact, it speaks nothing but the truth. 

2015, I do love my caffeine. 

To a new year. 

Nitty Gritty Dirty Grief

Your Life is Sad

Guess which week kicked me in the hiney and then turned around, laughed and offered me a poopy sandwich? 

Yeah, this last one. 

You might have noticed it in my facebook posts on Tuesday;  my requests for prayers, thoughts, love,  good juju…..

And the same request on Wednesday. 

Friday.

Sunday. 

You can unfriend me, really. Last week was a big dose of reality pie. 

Without the Cool Whip. 

That was my second food analogy. I might need a snack. 

On Thursday, work friends and I piled into a car a drove to lunch. I monopolized the conversation with the following: 

– My lovely friend with Stage 4 breast cancer in the ICU fighting with cancer for every breath

– My lovely friend, Maria with her son in the ICU

– New friends who have moved to Colorado because they have lost two mito children in the last 6 months. Their third child, also with mito needs a medical marijuana called “Charlotte’s Web” to control her seizures. They lived in Georgia and are moving here to get the medication their daughter needs that is illegal in their home state. 

This is what I post on Facebook! 

Because it is my life.

We got out of the car and a friend declared she was not riding with us on the way home. 

Because these stories are sad. Heck- these stories are frickin’ devastating. And I tell them like I’m ordering a sandwich. 

Huh, another food reference. 

And I thought. ‘Am I that sad? Is my life that sad? Am I immune to what makes the normal person sad?’ Have I become a crab with a hard shell, beady eyes and a threatening claw? 

Perhaps…… I really like crab. 

Here is what I realized in the last week….You can have sad circumstances- you can have ass-tastic, my-god-is-this-my-life circumstance but that does not make you a sad person and that does not give you a sad life. 

On the contrary. 

It’s the point when you know the charade is over, you have nothing to hide, your life is so unperfect you have no choice but to call the tribe together- admit your brokenness, admit that you are so terrified by the unfairness of life, that your only choice is to share it. Ask other people to help with the load, the grief, the sadness. 

And the beauty is when they pick up the load and help you carry. And when so many people pick up the load, it is not a load at all, it can fit in your pocket, or maybe a cute handbag. 

I do have a cute handbag.  

We cannot carry our burdens alone. Life abiet amazing, is too hard to go alone. This week was sad and worrisome and beautiful and hopeful

and human. 

Nitty Gritty Dirty Grief

Another post about Bath Salts


Aren’t there days you wish you could bathe in? 

Let the scent soak into your skin? 

Someone passes by and says, “Wow, what is that great smell?” 

And you would say, “Oh that was Thursday. It was an amazing day. Doesn’t it smell scrumptious?” 

And as you were typing or doing everyday things, you would catch a whiff and hold your palm to your nose……inhale…..ahh Thursday. Thursday was a good day. 

Today is Thursday. And I am trying to bottle the scent of this great, great day. 

My company gave $150,000 dollars to our Children’s Hospital today. 

Last time I checked, $150,000 was a lot of money. 


Rumor has it, this is one of many gifts

Perhaps today needs to be put into those baths salts I never use…..I would use this one. It feels fabulous….. dare I say giddy?  

My parent company doesn’t live here. They live in Dallas. But they are very involved in Dallas Children’s and heard about the money we raised for the Courage Classic. They decided they should be involved in Children’s Colorado too. 

I think I work for a mighty fine company. And how great is it to say that in a world of corporate angst???? I work for a mighty fine company. 


Here I am with our CEO and his amazing assistant. Both of whom have brought this gift to fruition. 


Here are a couple of us pre-check presentation

And touring the new Multi-Disciplinary Clinic- where a majority of money is going. 

Wait….let me post the check again



That’s a pretty check. That check is a beautiful, beautiful thing. 

So many things have brought this about. Some people say it’s my passion for this place but passion only goes so far. I have been so fortunate to meet so many devoted, giving, generous people along the way. 

And today, to be surrounded by the people I love, the doctors of Children’s, those who loved Samantha, the Leaders of my company…it was a good day. 

My mama put it best tonight-  

What an amazing and humbling chain of events set in motion by one courageous little girl. A truly awe inspiring day at Children’s Hospital

And then she saw two shooting stars and named one Jack and one Samantha…..


Amazed, humbled, extraordinarily grateful. Are there words? No, no words. 

I’m going to draw a big hot bath full of Thursday- hoping this love and gratitude soak into my pores. Hoping next week I can inhale the scent in my palm and think….ahh….Thursday. 

On another note- you members of this crazy tribe…. NONE OF THIS would be possible without you. My cup runneth. I would like to make a bath salt called Crazy Tribe. I would soak in the fabulousness of you all.