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.

What do you say when you don’t know what to say?

 I have been trying (without success) to put into words, the meaning of the last week.


Love?


Gratitude?


Grief?


Happiness?


Sadness?


I have found that the best dishes combine the sour and the sweet, the sweet and the savory, the salty and the honeyed.


My favorite chocolate is dark with sea salt and almonds…..so there you go. This week was my favorite chocolate; complex, bitter and a salty at times, yummy, decadent, rich, fabulous, just a tad nutty and best paired with a lovely Cabernet.


Thank you for a wonderful week.


Last Wednesday was Samantha’s birthday. Our team hit $50,000 at 9:15 that morning. I watched with awe as our tally went up by the $100’s every minute. We had done this. We had done this.


$50,000 was going to fight the disease that took our girl.


I knew I would be glued to the computer if we stayed at home so hubby and I took a drive through Rocky Mountain National Park and up to Grand Lake.


I left my phone at home. We held hands, had a picnic and talked about the day she was born. It was a tad salty and a good celebration.


And our tally continued to climb.


And then came the weekend and our ride. Oh the weekend! I without a doubt, have the best team ever. I am still bathing in the love, support and generosity from this team and from our tribe of friends and supporters! Thank you all so, so much.


Everyone did great. The hard training paid off. We avoided the sinkholes through Leadville and it was amazing to see Summits for Samantha jerseys at every turn.


On the last day we met before the finish line to cross over together. As individuals rode up to the rest of the team, everyone cheered. And we all got on our bikes; 52 of us looking fabulous in our team ‘kit’ snaked up the hill to the finish line. We were a great, big Summits for Samantha biking parade!


And I cried all the way up…..happy cry….chocolate with sea salt.


Our tally continued to climb- $60,000


And we all went home, sweaty, (truly) salty, tired and energized, and took a nap.


Tuesday morning found me on a flight to Manhattan. My legs were still painted with temporary tattoos (how do you get those off?), my nose slightly sunburned and I felt like a giddy teenager after a date with a crush. I was in love with the weekend.


Yesterday was the day we lost Samantha, two years ago. The exact time passed as I was eating a lobster roll with a client. I noted the clock, looked up at the ceiling and played with my ‘S’ necklace as we talked about response rates. Later in the afternoon, I processed this crazy week by walking in crowds on 5th Avenue. It amazes me how lost you can get in New York among so many people, perfect.


We had a client party last night at a restaurant above Grand Central Station. It was decadent; caviar, tapenade, prosciutto and Parmesan were passed on tiny plates. Below us were commuters heading home after a long day, above us were the constellations and Greek Gods painted on the ceiling of Grand Central.


And our tally continued to climb to $70,000.


I stood in a cocktail dress with temporary tattoos still on my calves and felt somewhat ethereal; crazy, perfect, sad, embracing, powerful, loving, amazing week.


The waiter passed desserts- I took a dark chocolate brownie sprinkled with sea salt.


Thank you…..a million, bazillion thank you’s. You all are the Greek Gods on the ceiling of Grand Central Station 

I told you I would be boring in July, didn’t I?

July is tough. And those who know us know why…..we have Jack’s birthday, Samantha’s birthday and the day we lost both of them….and we have this crazy ride all in the middle.

This crazy ride, with this crazy team, who is pulling together $50,000.

And it makes me cry….out of joy, out of grief, out of complete gratitude, that this is where July has taken us.

Crazy July.

This weekend I had the pleasure of leading a ride up Berthoud Pass.

Berthoud is steep….but my team is quite mighty.

And I met a friend…and on the way I was talking about July, and why this month is so hard. And she turned and said to me….”yeah, we lost my brother in July.”

And I was humbled and we talked about her little brother who was taken too soon. And we shed a tear.  And realized I am not the only one riding for cause. Perhaps what brings us together is July…….

Crazy July…

And crazy team! Up top Berthoud Pass!

Not sure what the big gray bar is there, but look at the ‘P’ they are blocking out…Cheeky Monkeys

Part of the team up top! Did I mention I have a very good looking team? Not everyone can pull off spandex and a shammy!

To July, and my team, and gratitude….and too much crazy emotion to process…and to our ride.

Did I mention you can donate here?

Yesterday was Jack’s birthday.

Happy birthday Jack, you would have been seven years old.

Seven years…..holy moly.

Seven years ago, people would say, “It will get easier with time.”

And I wanted to say, Well I certainly hope so because today the sun hurts my eyes and every breath feels bitter.

But life went on.

And the days turned into years. And one year turned into two, two into three. And I no longer counted down the days until his birth, in fact the week kind of snuck up on me.

Crazy life.

We have had horrible fires in Colorado. People have lost a lot- over 300 homes in Colorado Springs.  A friend of mine posted that it’s so odd to continue our daily life with destruction around us. It’s almost a slap in the face to those mourning…….the world should stop but it does not, the birds should not sing, but they do. The tide carries us forward, the clock keeps ticking, the sun rises and sets, and as time goes on, every day becomes a new invitation for us to join.

On Jack’s birthday, I rode 65 miles with our team, Summits for Samantha. They all remembered Jack’s day and wished him Happy Birthday. Hubby and I had a mellow day finished with grassfed, organic ribeyes and a surprise bottle of wine Hubby had found. It was a bottle from France, the same wine we enjoyed from our honeymoon.

To go ‘on’ implies that we forget. To move forward….to gather the beauty and grief we have collected and weave it into this life.

Happy Birthday Jack

It has been record-breaking hot in Colorado and we have been plagued with horrible fires.


Today hubby and I woke up to heat, haze and the smell of burning wood in the air. Our lovely mountains, just five miles away could not be seen.


Yuck.


We decided we would spend the day inside- the movies, Men in Black III. We go to about one movie a year so it sounded nice and I was happy to get out of our (Gasp!) non-air conditioned home!


It turns out the movie was very funny. Hubby and I spilt some popcorn and a smuggled coke. We held hands, it was almost a date!


There was an alien in the movie who could see the future but all different versions depending on what the person did next. He talked about miracles…


“A miracle,” he said, “is something that seems impossible but happens anyway.”


This hit a cord in me. I thought of our Courage Classic Team and that we are half-way to our $50,000 goal. I thought this would never be possible. $50,000 is a lot of money! A lot of money! And we just might make it.


And in my mind, that would be the impossible that happened anyway…..a miracle.


And so I cried, in the middle of Men of Black. And hubby squeezed my hand. He is used to seeing me cry in movies.


Tonight our books Living Well with Mitochondrial Disease are in and will be distributed to families in the Mitochondrial clinic…..not impossible but still very, very cool.

And it rained. If only for a brief time, fat rain drops plunked on the ground and were eaten up by the earth. It’s a little cooler and the air smells fresh.


Impossible? I hope not but still very, very cool.

Wanna donate to our miracle? You can right here

To the impossible.

I think perhaps we have become a bit silly.

And I don’t care if you are a democrat or republican, tea party or liberal. I would like to think that we are all educated Americans; concerned with the world around us…..

Okay….maybe not even concerned, maybe not even educated. But enough to know the world around us.

Enough to know that if you go on National television, your facts are straight. Enough to know that Sweden was not part of the communist block- that they are not evil,  And that really, if you look at how every country has fared during a world wide recession- Sweden has done pretty well.

PS- Our Miracles for Mito president is Swedish and I find her quite fabulous. So I am trying to tout us all as wonderful, Swedish loving people;

Which we are until you read:

here.http://www.addictinginfo.org/2012/06/18/were-all-going-to-hell-or-to-sweden-according-to-dr-monica-crowley/

PSS…Maria, don’t read this!!!!

PSSS….Also know many people who grew up in Eastern Europe and find them quite wonderful.

And you can say to me, “Heather, you are full of crap! I don’t want to be Swedish because they are a Socialist country and I don’t want my government to have that much control!”

And I will pour you a glass of wine and say “thank you dear reader to know that Sweden is Socialist and not Communist. In fact, let’s look at the lovely Swedish Royal Family while we eat some Swedish fish. They are quite tasty and do not have an alternate agenda at all….they are just fish. Well not really fish but candy…okay maybe they do have an agenda.”

Have we really waged a political war on Sweden?

This week we also waged a war on my private parts….which makes me just tired- between my private parts waging a war on me and the government waging a war on my parts.

Should Lisa Brown been silenced? No….should the Vagina Monologues been touted on the Michigan State Capitol?  Hmmmmm….I think the more we tout our division, the more we are divided. 

How can we understand our world?  How can we understand Syria? The crisis in Greece? Or the issues in our own country if we can not agree on the appropriate word?

Ahhh…the appropriate private part word. I have several words but I know my dad reads this blog so I will refrain.

🙂 You’re welcome dad!

We are so much better than this. We have better fights than this.

I am now going to eat some Communist Swedish Fish…..

Dear Readers……

Uh Huh…..I told you I would be boring for a month or two.

Here is a letter to our 52 RIDERS of the Courage Classic!!!! And a reminder (not from me!) why this is important….

Hello Team!

I hope you all have not melted! It is hot, hot, hot! I rode the Denver Century yesterday and I feel slightly pan-fried.
Kudos to my dad, Rick and Stepdad, Jim for riding with me. it was a good Father’s Day.


This weekend was really amazing. We attended a fundraising bbq hosted by a team member and his family. Kudos to his son, at 7 he is the youngest member of our team!


Once again, we will ride on Thursday evening from the entrance of Left Hand Canyon to Ward. Let me know if you will be joining us.
For those new to us, let me introduce you to my blog. You can find me at http://www.samsmom-heathers.blogspot.com. I started posting when Samantha first got sick and have ever since. I will be posting stories about the ride here.
I tend to be a bit long-winded and you all know why this is important to ME. But I have realized through this journey that we all have our stories. There is a reason why we are riding. So, if you feel up to it, let the team know why you are here. I can post on the blog or just share it with the team.

Tonight, another team member has shared his story. He rides with our team but also pulls a tandem for Team Courage:


One of the Team Courage kids went to see the Doctor today. The Doctor believes that he is ready for an ARC brace with a carbon fiber wrap. I have no idea what that is other than he needed to gain strength in his ankles before he could qualify for one. It will be fit into to both his new track shoes and his new bike shoes this week. We will test it on the bike Saturday morning during the Team Courage ride.


His mother thinks that running and biking (with Team Courage) have given him the strength for the new brace. She views this as great news. It comes up the front of his shin and velcros with two straps. He can now flex his ankle without the bulky, articulated, hot, plastic AFOs he has had his whole life. I am very excited for him.


I can’t take credit for this milestone but I hope I have helped in some small way. I wish I could have done something for Samantha. I like to believe Samantha is proud of getting me involved with kids that need help like Team Courage. What I wouldn’t give to have her and her smiling face on the back of my tandem during the Courage Classic

PHHHFFFFFFF…..well not only is it hot but I am crying. Consider me a nice steamed dish…..and consider me somewhat humbled by everyone’s efforts.
 
Keep pedaling! I am quite proud of all of you!

-Heather

and……if you would like to donate….you can do it here…..