Nitty Gritty Dirty Grief

Alchemy of Pain

I’ve been waiting a week to write this post.

A week to let my emotions ferment, brew, stew on the complexities of this life.

Last Friday I was driving up to the mountains to meet my friend Heather for a girl’s night.

Along the way, I heard that Jessica Ridgeway’s body was confirmed in the open space in Arvada.

I was supposed to drive to Fraser to meet my friends. Instead I drove to Frisco. I realized my mistake and cursed, and turned around to drive another hour to Fraser. I would like to say I minded, but I didn’t. I think I needed to to think.

Along the way I cried for Jessica. Jessica disappeared the week before. I saw the posters of her missing; they were in the airport, she was on the news, Amber alerts. But I didn’t pay attention until horrifically, they found a body they couldn’t confirm.

And maybe I should have paid more attention before but our own Mito community was in a state of emergency.

But on Friday, on the way to Frisco/Fraser, I heard about this poor child.

The death of a child is not new to me. We lose kids. I have lost two. I know others who have lost and we talk often of our kids. I sit on the Bereavement Committee at Children’s. The difference is that when we lost Samantha, I felt like it was on her own body’s own accord. We grieve everyday….but I honestly feel like it was her own decision. And for as much as I struggle to go on without her. I know Samantha was surrounded with love until the very end….and still is.

She was not taken from us suddenly or violently. Samantha did not suffer. Nor do I think she was ever afraid. I can accept this. I couldn’t accept what happened to Jessica.

So I drove another hour.

The next day, on my way home, my lovely friend Laura called. Her church was offering 50% of their Sunday donations to Miracles for Mito.

So on Sunday, I attended two sessions of church.

And church was where I needed to be, my head was off and I needed a centering force. I did after all , drive to Frisco/Fraser.

And on Sunday, I got out of the house without a lick of make-up on. I just walked out the front door without my foundation. I looked in the car mirror in Longmont and realized I looked a tad frightening

Those who know me know this is unheard of. I refresh the lipstick every hour….noses are powdered freely and often.

Clearly, something was off.

If you are ever off, go to a Unitarian Church for three hours. Seriously, I listened to Indian music, sang, and meditated on the sermon; The Alchemy of Pain. 

And we talked about Pain. And I cried. I cried because I drove to Frisco/Fraser and left the house without foundation because something I couldn’t put into words was haunting me. 

But no matter how ‘off’ I seemed….the world seemed much more off; worse than off….evil and unexplainable.  

And we read a poem….by Naomi Shihab Nye:


Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,

only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.

As we heal. Perhaps kindness is what makes sense. Perhaps we should look for it like a shadow or a friend.

I left calm, grounded and grateful for a community of kindness. Transcending pain is not rising above it; it is greeting it and acknowledging it….even if you have to drive to Frisco/Fraser along the way.


Nitty Gritty Dirty Grief

What’s Your Role

What’s your role?

It has been a frightening, tiring week for our Mito Families. As they have worried about liver function, seizures and fevers in the hospital, my concern this evening has been: will I have to sit in the middle seat on a four hour flight from Boston?

I do hate the middle seat.

I hate seizures and fevers more.

I am now in seat 17 E.

In prepping for my Boston meeting, we asked each other what is our role in the meeting? And we went around the table defining our purpose.

I will bring up the issue of the contract.

I will secure pricing

I will close the online project

We all have a role. A reason for coming to the table. A reason for making the trip

As the parent of a medically fragile child, you have a role, many times you have several roles at once; I am nurse, I am advocate, driver, bather, nutritionist, seizure monitor, interpreter of my child’s illness…..I am Mom.

You wake up in the morning with an undeniable sense of purpose. That sense of purpose carries you through the hardest decisions, the longest nights, the bitter battles with medical teams.

This week as one mito kid after another went into the hospital with frightening symptoms, I found myself searching for my purpose; I am obsessive facebook checker, I am rambling message leaver, worrier, pray-er, meal leaver.

And I would be lying if I said I wouldn’t trade positions with any of my poor, worried, sleep deprived hospital moms. I would. I would in a New York minute.

But that is no longer my role.

So I had to have a heart-to-heart with myself this week. I had it when I made pans of chicken enchiladas for our inpatient families; I had it again when I delivered lunch, and yet again when I checked facebook for the 20th time on my phone.

You can walk away from this, Myself said to Me.

It wouldn’t matter, I said. I would still search for my place, role. I would still worry about our mito families. But I wouldn’t have my community by my side; this crazy, passionate, med-givin’, suctioning, mama-bear, big girl-pants wearing community. And I love that community.

Last Friday, I did a quick stop-in to Robert and his Mama and Daddy. It was at that time, when changing a poopy pillow, when I realized that I feel closest to her when I am helping this community that Samantha created.

Poopy pillows tend to bring moments of clarity to me.

In our meeting today, our agenda was thrown out the window by the client and instead of talking about contracts and pricing, we had a three hour discussion about strategy. It was a fantastic meeting.

And roles we so carefully defined were null and void.

Tonight, as I cozy up in the middle seat, tenderly swaddled between two strangers, I realize my role is to someday come to peace with my lack of a role; Manager of Heather’s Harmony. The job description is vague as I feel it is forever evolving. There are however, several ‘action items’ effective immediately with this new role:

– Do not covet the life of your friends when they are in the ICU with their sick child. It will do no one any good

– Love and cherish the tiny family of you and your husband. This is sacred space

– Remember what she taught you and use it to make a difference- no matter how small that difference is

– Cherish and honor Samantha’s memory. This too is sacred space

– Eat chocolate and enjoy a glass of wine if you have to sit in the middle space

Undeniable sense of purpose.