Please ignore the fact that this is my first post of 2013.

One of my 2013 goals was to write more often……

hmmmmm……

But the New Year has not been wasted- much progress has been made even though it has not been documented.

New Year’s Eve found me at the dump.

I love the dump. Really I do. Where else can you drive in with a car full of crap, drop it off with no questions and drive out? Fabulous. I even get a bit of a dump attitude….that’s right…I’m cruising at the dump…in my station wagon…..and baseball hat

I wave at the other dump-goers but they never wave back. I think they know I’m a bit of a poser.

And why are there sea gulls at a land-locked dump? I think sea gull is tad generous. Dump gull would be more appropriate.

2013, at the dump- cleaning out the house.

And so the rest of the month has followed that theme- the cleansing of our home.

In January we gave Samantha’s bed to a lovely little girl who needed it….which was cleansing, healing and sad. Better than the dump and without the birds.

That day we packed up the bed, packed up the Christmas decorations and I promptly came down with a migraine….which is also for the birds.

My new 2013 cleansing also brought a new therapy….trauma therapy.

I decided it would be nice to have an ambulance pass by me without hyperventilating and to deal with some leftover PTSD.

“Why do you want to do this?” My therapist asked

“Trauma therapy?” I thought about a snarky comment, because the bamboo I’m sticking in my toe nails isn’t sharp enough? But I knew she would want a real answer. Silly therapists and their real answers. So I came up with one….

“My mental basement is flooded and I need to drain it. You can live in a house with a flooded basement- just stay in the living room and the upper floors but sooner or later that stinkin’ basement starts to smell….and collect crazy bacteria….and ruin your keepsakes and the carpet. I need to drain my basement.”

My therapist nodded and smiled, “Let’s pull out the Draino.”

Happy 2013.

I have not posted for a while.


Not because my head wasn’t full of things to say, but I wasn’t sure how to say it.

Newtown threw me for a loop. As it did everyone, as it should.

And what to say about this? There is nothing to say….there is no feeling this, there is no finding the good in some obscure place, there is no good.

I was listening to the news a week after the shooting, the newscaster said that this was a town that is on the journey towards healing.

I laughed out loud to this- how quickly we move from a horrific incident…..the tragedy and endless coverage……to political debates about gun control and mental health.

And now we are healing. All in one week.

But no one talks about the grief. Because no one wants to talk about the grief- it’s messy, it’s personal, it’s raw and it’s its own ravenous, gluttonous, inconsolable beastie.

It is not healing, it does not feel good….especially during the Holiday season.

Ah, the Holidays.

This holiday found us in Virginia; along the Shenandoah Valley visiting Hubby’s Mom. It is always a quiet holiday that I look forward to.

I even knit a scarf….and it is soooo good I even wear it! Proudly

Hubby, my new scarf and I went on a hike- The Old Rag Trail….which I think is a funny and not a very flattering title …..The Old Rag Trail….to its credit it is a beautiful hike.

We started on this trail together but hubby soon outpaced me and went ahead. I walked alone, cracking the thin puddles of ice that had formed on the trail and thought of what has been on my mind for nine days- those 40 parents in Newtown; the way they must feel right now and this long, sad complicated journey they must walk with grief.

I was alone in the valley, well not really alone. Hubby was only 2 minutes ahead of me but this hike was mine….me and Winter desolation, with a cool breeze down my back. This was my journey. Hubby is on the same trail but walking his journey, at his pace.

This is grief.

And as I hiked I thought of my path and our 3rd Christmas without Our Miss and 40 newly grieving parents in Newtown on their own journey.

Do you remember Sleepless in Seattle? I loved that movie. Tom Hanks had a great quote about losing his wife:

I’m going to get out of bed every morning and breathe in and out all day long. Then, after a while, I won’t have to remind myself to get out of bed in the morning and breathe in and out. And then after a while, I won’t have to think about how I had it great and perfect for a while

Lovely but I do not agree. In those early, raw days of grief, I would not have reminded my lungs to fill with air. I would not remind myself to keep going, my heart to beat, my lungs to fill.

In fact, this seems to be one of the cruelest aspects to grief; your child is gone, your breath is taken from you but you continue to breathe. Your heart is broken yet somehow in some horrible sense of irony, your broken heart still continues to pump blood through your body and feed your poor soul.

Stupid heart, stupid lungs….keeping us breathing.

I turned the corner on my Old Rag Hike and there stood Hubby looking over a ridge. I stood with him and give him a pat on the butt.

“Water?” he said, and handed me the bottle.

I took a slurp, handed the bottle back to him and we started on our path.

Some people might have called my Grief journey inappropriate. Month two after losing my Sammaroo I sat on a beach for three days with fabulous girlfriends and got shitty drunk.

It was fantastic….But God I was mad. I was mad, drunk and determined to let the universe know that I would make a name for my girl…and that I would survive. That I was not done, nor was she. 

At month six I threw myself a 40th birthday party that from what I remember was fabulous.

At month six, I had to remind myself that if I had to keep living this life, I had to grieve my way. I was (and sometimes still am) loud about my rage, my robbery and my undying, absolute love for my girl.

I have to do this my way.

Grief still kicks me in the ass……hard. I have found myself outside in the middle of blizzards lying in the street in my penguin pajamas screaming about a life I did not sign up for.

The loss is so intense it feels that my skin will burst open. In fact I want it to burst open. 

Like that scene in aliens? Where the monster burst through the body and then scurries off? I have often thought that my body cannot contain the intensity of my grief.

Fortunately during those sessions, I get cold, my penguin pajamas start to freeze to my butt and the street we live on is not that busy. Hubby greets me at the door with a towel and a full body, all-encompassing hug.

Will he grieve in the street with me?

No, his grief is different. But he will meet me at the door. That is all I can ask.

And he looks silly in penguin pajamas.

There are people who walk this journey with me. Some have been welcome and some have not. Some I embrace with gigantic open arms and some just piss me off.

I am not the ‘What doesn’t kill you makes you stronger’ type of person nor am I the ‘God only gives you what you can handle’ sort of girl or the ‘She is now an angel in heaven’.

She was an angel here. I would prefer her here.

And I would have been perfectly happy living this life weak and mediocre, thank you.

What I have realized is that people don’t know what to say, they panic, get flustered and the whole angel thing pops out. It does not make them bad people, just a tad panicked. These people usually walk the Old Rag with me for a while and then get ‘lost’ and end up on another trail.

That’s okay. I don’t know I would walk this trail either, if I didn’t have to.

I found Hubby at the next turn. “We only have an hour of daylight. You ready to turn around?”

“Yeah, my toes are cold.” We took a second and looked over the vast Shenandoah Valley, desolate and gray in the winter but still vast and stunning.

And we walked back to the car; both on the same trail but at different speeds.

This is me, and my walk.

And those 40 parents will find their own path, and it will all be different, and heartbreaking and at some time peaceful.

It may include God

It may not include God

At a recent support group, I spoke with a bereaved couple. When asked how they found support, they said they found a lot of comfort with their minister at church “Yeah” I said, “God and I are still battling.”

Really???? They let me talk to bereaved parents and this is what I say? God and I are still battling???? And we are, but not so much nowadays.

God,….by the way was not a part of this…..God is what good may become of this.

It may include a support group

It may not

I personally do not do great in support groups. I prefer one on one therapy where it is all about ME! That and a good anti-depressant. …but this is my journey

You may testify about gun control and mental health

You may not

You may redesign your entire house or you may move

You may keep your child’s room a shrine forever

After two and a half years, I can now donate her bed….I think

We got to the car and Hubby pulled out a Heineken for us to share as the sun set over the valley. This man, this good man who was an amazing father to our daughter…this man who misses her so very much.

This man has grieved differently than I. Our paths so different at times. But at the end of the day we understand our love for our family that has been torn apart, and our love for each other, and our respect for each other’s path with grief.

On our 3rd Christmas, I guess that is all we can ask. That and a Heineken over a sunset.

Crap, I found something positive.

And for you parents of Newtown…..you are not alone. Find those who respect and honor what YOU need to go through…..your rage, your depression, your manic stages, your complete pain.

And hold your child in the deepest part of your still beating heart. They will always live there.

I would be lying if I didn’t say this week kicked me in hiney.

A couple times.

Not that this week was bad, in many ways there were a lot of good things.

And a lot of tragic.

Life.

On Monday morning, I received a sad, sad, email. A family we know lost their daughter, Sarah to her chromosomal disease, Trisomy 18. 

She was two years and 3 months. She and her family fought so hard and like our medically fragile kiddos do, Sarah had nestled herself into the hearts of everyone who knew her.

I got the email at work among requests for proposals, recommendations, call backs for marketing plans.

I read the email, paused and went to the next message when a voice inside me said ‘Feel this’.

“I can’t” I said to my stupid inconvenient voice, “I can’t because if I feel this the whole day is done. Nothing will be accomplished. I will be in a ball for the rest of the day. It’s too close.”

‘Feel This’

‘Shut Up!’

‘FEEL THIS’

“GO TO HELL!”

FFFFFFFEEEEEEEEEEEEELLLLLLLLLLLL THHHHHHIIIIIISSSSS!!!!!

I finally stood up a bit too fast and said to my co-worker and friend Marne……. perhaps a bit too loud and a bit too manic, “I AM GOING FOR A WALK!”

She looked at me sweetly, noticed the tears streaming down my face (because I am so stealth), and said,  “Would you like some company?”

“Um, yeah….I think I would”

And so we walked around the building and talked of God and Life and Crappiness and the necessity to Feel It.

Marne lost her dear Mom and on this particular Monday morning, a co-worker who just lost their mom returned back to work because really, that’s how the week has been…..lots of loss. 

And Marne, in her loveliness talked to this man about the loss of a Mom.

And then I, requested a walk with her to talk about loss.

Because that’s how I roll….at work….hey, let’s talk about loss.

Marketing plans be dammed!

I felt better after our walk and that I could get through the day.

The next day was our Giving First Day and I got a sweet email from our neighbor Earl. It said  “I pray for you and Bart every day. I trust God is answering those prayers in a way that blesses you.”

And I thought…..what does bless me?

And on that Giving First Day, we raised A LOT of money in one day.

To give to our Mito Families

And that Blessed me.

And ordering a Honey-Baked Ham Platter for Sarah’s family Blessed Me, because I knew people would show up to share condolences and be hungry because they didn’t know what else to do.

And it hurt me that I knew that about funerals. And that food (sometimes) is better than flowers.


Can blessings hurt? Maybe

I hugged my hubby tonight and said “this week was hard”

“I know” he said and he hugged me harder.

But I also know this, it felt better to take a walk around the building than to repress an email.

It feels good to talk, honestly.  

It feels good to raise an impressive amount of money in one day for a non-profit born from my daughter’s memory.

It feels good to order a Honey Baked Ham Platter……with extra cheese

And to admit to my husband that I am fallible…..because he didn’t realize that before 🙂

Feel it. You would be surprised what sprouts from it.

And to dear Sarah…..tell my girl hello.

Hip Hip Hooray! It’s Colorado Giving First Day!
First Bank will match our dollar
Everyone give a hoot and hollar!

24 hours is short and sweet
We think this day is pretty neat

We hope you can donate to Miracles for Mito
To help our kiddos in this great, big Fight-o

You can donate here!

Hello Friends and Family!

We are thrilled to participate in the 2012 Colorado Gives Day! Starting tomorrow, Tuesday, December 4th at midnight, over 1,000 non-profits will participate in this day and raise money for local organizations. To make the event even ‘sweeter’ First Bank will contribute $300,000 to participating non-profits on Colorado Gives Day and distribute funds

Last year an amazing 12.8 million dollars was given in one day to Colorado non-profits.


100% of the money you donate will go to Miracles for Mito and help support our various projects; our grant program, meal program and family support.

24 hours! You can Donate Here!


Thank you for your help!

Last week I was talking to a friend who got caught in hurricane Sandy. She has been without power, without water and now without her washing machine.

“The thing is,” she said, “when I’m stressed I do laundry! And now I can’t!”

Being the ever sympathetic friend, I told her she could come out to Colorado and do my laundry….I give and I give.

Today I found myself scrubbing the toilet like a banchee’ and thought I might be a bit stressed too.

But the toilet is sparkling!

It is no wonder we are stressed. For some we won an election, for some we lost, for all we grieve that our country is so divided. We move towards a fiscal cliff, General Petraeus has resigned due to a torrid love story and (personally) our buddy Jacob fights everyday in the ICU at Children’s Hospital.

We should have many clean toilets…..or a lot of clean laundry. 

I was on  Facebook the night of the election. It was a bad place for me to be….because you know how I can keep my mouth shut…..hehehe

In retrospect, it’s a funny scenario….maybe…let me lay out the Facebook schedule:

7:00 pm: Everyone was nervous…crazy nervous

8:00 pm: “I’m so nervous, I’m drinking.”

10:00 pm:  The Republicans drank for the end of the world, the Democrats drank to celebrate and we ALL reconvened on Facebook and told everyone what we thought. I personally did not drink, but I was on cold medicine- I’m not sure which is worse

10:01 Social Media at it’s finest.

I was unfriended by a ‘friend’ within 20 seconds of the calling of the election. To his credit, he said “I am unfriending all of my democratic friends.”

No hard feelings, it was what he needed to do at the time. But I will miss him and his wacky updates.
  
Ted Nugent called me one of the following this week: a pimp, a whore and/or a welfare brat. I’m not sure what I would I’m going with rather be but I think I’m going with Pimp….I’m not very pimpin’ but I can try. I can swagger. I need a hat; purple, velvet.

But I think among us common folk, we are not all that different. We want what is best for our families. We want stability. We want to be proud of who we are.

And despite common myths, if you fell through the ice on a big lake, I would come and save you. And even make some hot chocolate.

Because I LIKE you. And I think you like me because we are still friends…on Facebook…which, as you know, is the barometer for human emotion.

And so, we move on, THANK GOODNESS we move on….bruised, battered and a little scarred. 

I’m glad we didn’t break up.  

Happy Election Eve!

I have decided I do not enjoy the political build up we experience every four years. It makes me uneasy, question my country and the people in it….

and it makes me miss my girl

Samantha and I voted together last time. She had been in the hospital for fifteen days with a MRSA infection. The weekend before I said to the doctor, “We have to go home! I have to vote!”

We were discharged on a Monday with IV Vancomycin. On Tuesday, we went down to vote….IV antibiotics and all. She looks resolute in her decision.

I missed her this year. My voice, yet charged, was not charged with the passion of fighting for her: Samantha’s rights, as a disabled child who could not voice her own.

On this election eve I filled in my tiny circles on the ballot and thought of our girl. She has taught me, that no matter how infallible we are, there is a time when we will need each other. And when, God forbid, we will need to government to help us. It’s not a bad thing, it does not make us weak. I have found more strength being in a community that needs help than insisting that I stand on my own.

So on Election Eve, I feel good about my vote. I am at peace with my decision. No matter where the nation takes us I have found a nation within my nation. This is a tribe of liberal Democrats and conservative Republicans and people who would like to continue to do good…dispute the crazy rhetoric around us.

To doing good.

And to my girl, who taught me to reach out to the tribe.

Happy Election

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:

Kindness

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.

 

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.

I used to be a ski instructor.

And I am not a good sunscreen user.

This lead to a large bump on my nose. A large bump that needed to be removed.

This really isn’t a big deal. It was not melanoma. I had a Basel cell carcinoma. Basel cells grow slowly, the cancer is not aggressive, 2,000 people die every year from cancer caused by Basel cells.

I think more people die every year from the flu. 

I went in today to have my little friend removed. I had MOHS surgery which I highly recommend to anyone with a friend on their nose.  

I was awake through it all. Hubby stayed in the waiting room and while cells were being tested, he made jokes about skin grafts having to be taken from my hiney.

Funny Hubby.

After round three of slicing things up, I asked the nurse if I could see my nose. She hesitated, “Dr. Allen really discourages us from showing MOHS work until it has been stitched up.”

“Oh, I just wanted to take a peek.”

“You really want to see?”

“Sure, it’s my nose.”

She held the mirror up and there was my nose, with a quarter-sized circle taken out of it. There was my face (which I’m fond of) with a huge, stinkin’ crater in the middle of it.

I withheld my urge to say “Holy Stink! There’s a huge freakin bloody crater in my nose!”

Instead I smiled and said, “Oh, he took quite a lot.”

Post-op, the doctor was stitching my nose from my eye down to the tip of my schnoz when the doctor asked, “Heather, you’re young. (I liked that he thought I was young) and I have just sliced up your nose and you’re so nonchalant about it,” he paused, “Either you are very confident in my abilities or you have a unique outlook on life.” 

I smiled. What a nice compliment. “Well, we have had a lot of medical tragedies in our life and here is what I know about today; I will walk out of here and I will most likely be rid of this nasty visitor I have. I will be fine. This is not arms and legs.” and then I thought about it. “And you know what? 100 years ago this thing would have eaten through my nose and I would have no choice but to take it.”

The doctor smiled, “And I thought it was the confidence you had in my medical abilities.”

“Well, that too.”

Lil’ Miss has given me so many gifts. Today was a reminder…..it’s not arms and legs.

Get well soon Dear Nose.