18 months ago we started a small non-profit in memory of our daughter.

As we planned our marketing strategy, we joked that we were ‘No Susan G. Komen‘ and someday hoped that we would be.

Today, I’m not so sure.

Today, I think there might be something nice about being tiny and slightly obscure and helping in small steps were we can.

The interesting thing about non-profits, especially medical non-profits is that they are emotionally charged, as they should be, lives are at stake.

Susan G. Komen’s decision to stop funding Planned Parenthood did not enrage me but it did surprise me. I looked at it as a PR nightmare and I immediately made a donation to Planned Parenthood.

Because as a non-profit, as a private enterprise, Susan G. has the right to endorse or not endorse who they want to. As a return, I have the right to sponsor or not to sponsor who I want to.

But honestly, the whole thing makes me sad.

Because people I love have this disease and it doesn’t care about politics, or women’s rights or Roe v Wade or who is liberal or conservative. In fact, it is slightly color blind and does not recognize pink.

Perhaps (as odd as this may sound) we have made people over-aware. We think that by buying a pink, frozen pizza, we have done our good. That by NFL players donning pink socks, everything is okay. That millions and millions of endorsement dollars are going to this foundation….an army of pink ribbons fighting this battle.

But talk to anyone going through this and it is not all good. Words don’t describe how not-all-good-it-is.

Susan G. has transformed the support for breast cancer. They have created communities for women going through this; support and guidance- letting people know they are not alone. And everyone, everyone knows the color pink.

Now it is time for Susan G. to stop painting the town pink and stop trying to see what new snack food can develop packaging in a lovely shade of rose. Perhaps now is the time to remember why they started on this road in the first place, to offer help…..for everyone.

I think I’m happy with us being small and slightly obscure….

Call me Judgey Judgerson.

My post last week was comparing my grief to someone else’s grief.

Perhaps that was poor form.

Last week, a dear friend of mine had come home from Germany because her father had passed away after a long battle with Alzheimer’s.

While my friend was away taking care of her family, her dog was hit and killed by a car.

And I thought of my friend and her dear puppy, everything she had gone through the last week and I felt incredibly sad.

And I felt kind of crappy about my last post.

Because I have no right to gauge how anyone else feels about their loss, I can only gauge my own. And my even own sense is a moving target, varying from minute to minute, day to day.

I once talked to a friend who wrote about mourning the loss of his mother. “It was so intense,” he said, “I could not get out of bed. The sadness seemed to consume me. Ironically, my mom and I were never very close.”

My friend decided to see a Hospice counselor and together they determined that he was mourning his mom but he was also still mourning his first marriage.

Sneaky Grief, trying to get a package deal…..

I always feel a little cheated, a little one-up’d when explaining a situation and someone says, “I know how you feel.”

Because we don’t. Our feelings are masked by years of experiences seen only through our eyes. I don’t know how you feel. You don’t know how I feel.

But that’s okay, we can respect and empathize, listen and provide comfort. It does not help anyone to proclaim “you have not been through what I have been through….you have no idea lady! ”

That would make me a grief snob. And if I have to choose what I want to be snobby about, Grief is not on my top ten list; shoes yes, grief no.

So I will not rank anyone’s pain. I will not judge.

Or at least try not to.

Or at least acknowledge when Judgey Judgerson rears her ugly head.

And to my dear, dear friend…..you know who you are. I hope you know how much I love you and how sorry I am for your loss. If it is any consilation, Samantha is taking good care of your puppy.

Today I was at a business lunch.

The woman we were meeting with was grieving the loss of her 14 year old lab-husky mix. She talked openly about her loss with tears in her eyes. “I miss him so much. He was my baby. Losing him was like losing my child.”

The words hung in the air losing him was like losing my child.

My co-workers/lovely friends were at lunch too and know my story well.

We all averted each others eyes.

I took a roll and started picking the sesame seeds off the top.

The woman pulled out her phone and started showing us pictures. She went into great detail about how sick he became; how he barked aimlessly at the door, lost bladder control and couldn’t walk up the stairs.

They had to put him down.

And I know it was very, very sad.

But I don’t think it was losing-a-child sad.

I continued to pick sesame seeds off my roll until the phone came my way. I looked into the brown eyes and grey muzzle of 14- year old Fido and told her how sorry I was for her loss.

I was surrounded by a pile of sesame seeds so I tore at my bald dinner roll.

I wondered if in return I should pull up pictures of Samantha and tell my story….no really, I didn’t wonder that but it would have been interesting to see the outcome.

Instead I mutilated the bread.

Two hearts; one that I share with the world and one that I hold very close. I think it’s a way of survival in order to function during awkward luncheons…..the closed heart is a little scary for those who do not know me.

Because you can talk about losing your dog over lunch with strangers. Many people have lost a pet….you can compare stories about a lovable companion gone too soon. You can talk about how the pain is comparable to losing a child among those who have never lost a child.

To talk about losing a child over lunch with strangers is a little too close to our hearts. You have to be invited to share that heart….trusted with a sense of intimacy and even then, there are times when it is too much.

I get that.

So instead I debated between fish tacos and a tuna wrap. I excused myself for a call that I really didn’t have to take. I refreshed my lipstick. Upon my return, a coworker shot me a supportive glance.

I was happy my coworker knew about my other heart. I was grateful that she handled it with subtle care across the table.

Scooting back into the booth, I slathered butter on my mutilated roll and asked our lunch guest if she planned on adopting another puppy soon.

Last Monday was my birthday.

“41, life’s just begun,” ….this is what my husband has claimed as my mantra.

It’s a good mantra but at 41, I feel I have lived quite a lot of life.

We drove to Fort Collins for a fancy birthday dinner.

On the way over, my husband asked if I this is where I thought I would be at 41.

I glanced over at him. He has grown a beard for the winter. Every year when it grows in, it becomes more and more speckled with grey. The grey mixed in with the ginger makes him look a little older in this distinguished, rugged manner. His beard matches the orange in the frame of his glasses which matches his turtleneck.

I looked over at him, driving down College St. and was happy he’s my husband.

“Honestly?” I said, “I thought we would be in a different place. I thought the back of my car would be littered with french fries and stuffed animals. I thought that on my 41st birthday we would be debating what kid-friendly restaurant would take us for the evening. In my head, my expectations were a little different.”

He reached over and patted my knee, “yeah, me too.”

“and it’s not that it’s bad. Look at us, we’re going to a nice restaurant to meet great friends, drink wine and have a fabulous meal. Tomorrow we’re getting up to ski. And I love you. And I love that you love me. And I love that we have helped each other through this. But no, I had expectations for a different 41.”

And he held my hand as we drove to the restaurant.

Expectations suck.

This weekend I was reading through Facebook and came across a very disturbing post- a post that I had to think about and process for a while.

A transplant doctor at Children’s Hospital of Philadelphia (CHOP) is recommending to his team that they deny two year old, Amelia a kidney transplant because Ameila is “mentally retarded”.

“You can take it to the ethics committee but as a team we have the final say.” These were the final words of the doctor.

Kid you not. The family is not asking for a kidney- they have a donor within their family. They are asking for the surgery to be performed. He told them he will not.

It’s 2012 and we live in this amazing country but apparently some people ‘count’ more than others.

You can read Amelia’s denial for this surgery here.

You can also sign the petition to allow Amelia to have her life saving surgery here at change.org

I read this on Saturday and felt awful for the family. I also selfishly thought to myself, Well, we don’t have to worry about that anymore.

And then my sweet Samantha, wherever she may be, came down and bonked me on the head. She reminded me that I promised to continue to be the voice for those who can’t talk, to work and advocate in her name.

And the more I thought about this, the more I knew I had to help spread the word. Thank you Lil’ Miss.

On MLK eve, I can honestly say that I did not feel discriminated because of Samantha’s illness but I also know were incredibly lucky. We were never denied a thing and worked closely as a team with her doctors. These doctors loved her and did whatever they could to make her comfortable and healthy.

…..but there were those times, those times when we had a new nurse or doctor, those evenings when the night staff was shocked by Samantha’s condition, when the words quality of life were thrown around…..I would think, you don’t know, you don’t know her, you don’t know us, you cannot make that judgement.

They made that judgement at CHOP on Friday.

And it is also times like these that I am proud to be part of a community that fights adamantly and honestly for their children, Facebook is blowing up, blogs are everywhere, the CHOP site is posting statements….this all happened on the heels of a long weekend, I’m sure the hospital Public Relations is going nuts.

As they should.

Granted, these were the words of one doctor and a social worker, this is not the overall opinion of CHOP. But if this woman had not spoken up, had not put this on her blog and facebook, the transplant would be denied and her daughter would have died.

And in the words of the great Martin Luther King, Jr; He who passively accepts evil is as much involved in it as he who helps to perpetrate it. He who accepts evil without protesting against it is really cooperating with it.

To our voices.

Happy Birthday Martin Luther King, Jr. May we all continue to fight the good fight.

Hubby was lucky enough to go to last week’s Bronco game.

I was nice enough to pick him up after the game.

After a run and a little shopping, I decided to watch the rest of the game at a downtown hotel with a glass of wine until hubby called for his Chauffeur.

I whisked into the Westin and ordered my Cabernet while squinting to see the score on the TV.

“Are you waiting for your little girl?” the man next to me asked.

“I’m sorry?” I asked, distracted and still trying to focus on the screen.

“Are you waiting for your little girl? Is she in the modeling class? I’m waiting for my daughter in the modeling class…..she just adores….”

Oh for the love, I thought.

“No.” I cut him off “I’m not. I’m waiting for my husband.” With that, I turned my back to him and watched the game. The bartender handed me my Red which I took along with the beer nuts on the bar and positioned myself as far away from Modeling Dad as possible.

Poor Modeling Dad. He had no idea what he was asking.

Today the Rep from GoDaddy called to re-register our Miracles for Mito domain name and ask how our service was.

Impatient, I almost let him go.

I am a busy Sales Exec after all!

I have to go…sell….something.

“What do you do?” the Go Daddy rep asked.

“What do I do?”

“Yeah, your website. What’s it about? What is Miracles for Mee-to?”

“My-to”, I corrected him. “It’s a foundation we started in memory of my daughter. She had a nuero-muscular disease called a mitochondrial disease. We help other families in the area.”

“Wow, well that’s just great.” He said. “My wife was diagnosed with cancer last year. I was always a cynic about the power of kindness in people but everyone just rallied around us, they gave money and time, it was really incredible what people did for us.”

My smile relaxed my body. “It’s pretty amazing isn’t it? Is your wife better?”

“Oh she’s just fine now.” And with that he gave me a discount on our domain renewal and told me to keep doing our good work.

Funny how a poor nonchalant Dad question spins me into my beer nuts and the GoDaddy rep makes my day.

Small talk….it’s a risky, risky thing, you never, ever know what lies beneath.

I deviated from the norm this New Year’s.

I found myself at the Boulder Reservoir with a mess of crazies.

And I was one of them.

January 1, 2012 I was standing in a long line, shivering at the Boulder Reservoir, waiting to jump in the water. My Supermom friend Amanda was by my side. Amanda put it best.

“My life is full of uncomfortable situations. This is nothin‘”

Gotta love me some Amanda.

A funny thing happens waiting in line to plunge into 35 degree water, you bond with the people around you. You talk about why you are doing this, you decide that you might be certifiably crazy but that crazy is kinda fun.

Our turn came, I held hands with people I didn’t know, I ran into the water and swam out to the ice. Swimming out was really no problem….really.

Coming back, my body realized the extent of my craziness, forced all warm blood into important organs, leaving my legs to fend for themselves.

My legs didn’t want to fend for themselves, in fact they were really quite upset about it. But I stumbled out into shallow water, looking like a drunken sailor and made it to the beach.

And then I realized I had toes…..toes who were just as pissed as the legs…perhaps more so. Toes who were so angry they felt like they just might explode off my feet….little piggies everywhere.

Wool socks and a hot shower convinced them to stay.

Who is joining me next year?

“Why did you do this?” Asked a friend of mine.

“Because it was there?” I answered.

But that’s not it, really. It’s more that when you are faced with death- when you are forced to live beyond death, the need to embrace life becomes outrageously important…..throw yourself into 35 degree water important. Your toes may be numb but they are telling you every single second that they are quite unhappy….that you are connected to toes….flesh and blood toes.

So 2012, I have made the plunge for you. I really don’t expect anything in return just a reminder that I am alive. And perhaps a moment, one or two, to embrace a little craziness.

Happy New Year.

And what have you done?
Another year older
And a new one just begun

A very Merry Christmas,
And a Happy New Year
Let’s hope it’s a good one
Without any fear

I couldn’t post until Christmas was over.

I didn’t know what to expect.

Truth is I dreaded Christmas

Last year I shut the whole thing out- because I could. A mom, mourning her daughter….hope, peace, new beginnings, screw it all

This year I felt I should let something in….but I had know idea what it would be.

We had a very White Christmas.

Wednesday night brought a foot of snow and an anticipated storm between hubby and I (we tend to have one big, fat, fight during stressful situations). In frustration and tears, I pulled on my boots, hat, mittens and non-wind proof fleecy pants and headed out into the blizzard for a walk.

I tend to be slightly irrational when in a state of anger and grief; only slightly.

Non-wind proof fleecy pants tend to be cold in a blizzard; no matter how fleecy they are.

Outside was silent….and white….and I found myself laying in the middle of our street, looking up at the storm, making a snow angel and yelling at the sky- yelling for my daughter, pleading with the universe above me to bring her back.

The universe was silent.

And it snowed; big, fat, flakes from the sky.

And so this is Christmas
For weak and for strong
For rich and the poor ones
The world is so wrong

Eventually my fleecy pants froze up and I decided I was too cold to fight the universe any longer. I went inside and drew myself a hot bath and a glass of wine.

And so this is Christmas
I hope you have fun
The near and the dear one
The old and the young

And after that, I was okay.

Okay to go on with Christmas.

Okay to decorate the tree.

Okay to hang Samantha’s stocking.

Perhaps I had regurgitated my Christmas angst in the street during the snowstorm

Perhaps that Christmas regurgitation was important in order to go on and let Christmas be a part of our lives and be pleasant during the holidays.

The rest of Christmas was lovely, really, it was quite nice.

The morning of December 26th, I laid with hubby in bed.

“Did you have a good Christmas?” I asked.

“Yeah, did you?”

“Uh huh,” I paused, “I missed her. She would have been swalking under the tree.”

“Yeah, me too. She would have been swalking right now.”

And I cuddled into his comfort, his own grief and his smelly armpit.

A very merry Christmas
And a happy New Year
Let’s hope it’s a good one
Without any fear

**Kudos to the great John Lennon for Happy Christmas (War is over). Thank you for your words

The cab drove me through the streets of DC, I watched the passing monuments; the Washington, World War II, the National Library. We stopped in the middle of the road while a police car blocked the intersection.

“I could find another way Miss,” he said.

A minivan pulled in behind us, “I think we might be stuck for a while.”

So we waited.

“Someone important, perhaps the President!” he said.

I craned around to see more (eager tourist!) but could only make out the waving flags. We waited, the driver sighed deeply.

“It’s okay,” I said. “Well move, we’re only here for a little bit.”

Five minutes later, the police car let us through.

We pull up to Connecticut Street and I step out in front of the Mayflower Renaissance. “Do you take American Express?” I ask and flashed him my card. My bags were gone, whisked away by a speedy valet.

I walked through the brass doors and note the pictures on the wall, Kennedy and Jackie O, Roosevelt, Reagan.

Really, I think, who do you think you are?

Not quite sure……but if I am not quite sure, this isn’t a bad place to be not-quite-sure-in.

I am directed to the 10th floor and look for my room….1015.

I am greeted by five Secret Security guards installing something in a chandelier. They look at me suspiciously as I turn the corner.

It’s okay guys, I got it, I’m supposed to be here.

At the end of the hall I am greeted by a huge black door and a silver sign the reads ‘Presidential Suite’

Hmmmm….

I glance at my room number and realize that I read the card wrong…..1051 not 1015 and I sheepishly turn back around past the Secret Service people.

They smirk…..yeah you think you’re important but you’re not Presidential Suite important. You turn right back around there Missy.

I talk the talk, whip out the Amex with the greatest of ease, but still trying to walk the walk.

My non-presidential room is still lovely; stocked with flowers, Aveda products and a view of the city. I decide that if I have to work through the afternoon, a room service lunch would be fitting.

Before I left for DC, I dropped off food for one of our Supermom families. Samantha’s friend, Monster Max was in the PICU with a nasty virus.

Two worlds, both of which I am trying to find my place- moving through each, stopping, waiting, adjusting, ordering room service, moving to the next step, wondering what the next step will be……movement.

My mom’s friend greeted me warmly at a recent fundraiser.

She embraced me and said, “how is your heart?”

I was taken aback a bit and didn’t answer. She answered for me, “It is still broken isn’t it? Of course it is.”

“Well yes,” I finally said, ” it will always be. It should be shouldn’t it? It should always be broken,” As I paused, I suddenly felt so grateful for the question.

I am fine. The whole of me gets up everyday and functions through life in a somewhat sensible fashion. But my heart, my poor continually beating heart, is quite broken.

And I was grateful to address my committed organ, my overachiever, my lovely, poor beating heart; she tends to get overlooked.

I paused after her question and then said, “But Heart is better than she was last year. She is healing but will always be broken and that is okay.” I pounded my chest in King Kong fashion.

I like King Kong.

And then I went back to shopping for jewelry.

Ironically, our president of Miracles for Mito posted about her heart. Lovely heart….35 million beats in a year heart…strong heart, amazing heart. Here is her post:

If I had a single flower for every time I think about you, I could walk forever in my garden. ~Claudia Ghandi

I sat with a friend at the hospital on Friday while her husband had heart surgery. They were putting a patch on a hole in his heart. As we sat waiting for news as to whether the hole could be closed, I started thinking about the hole in my heart. The hole in my heart is not due to anatomy or genetics. My heart has a hole for all the children and adults that deal with diseases that keep them too close to hospitals.

I have a hole in my heart that gets just a little bigger when I see someone suffering after losing a child, friend, or parent or watching the frustration as they wait for new research and progress for treating the medically fragile. It breaks my heart.

The hole in my heart is not a fixed size though; it aches and heals with each individual person’s story. The boy who just got a puppy that adores him — healing.

Losing my snuggle bug to mitochondrial disease — aching.

Seeing the huge smile on a sister’s face when she hugs her brother — healing.

Watching a healthy man with two children going to the hospital — aching.

Watching him come home and hug his children with no more hole in his heart — healing.

So the whole cliché “I have a hole in my heart” really hit home this week. I prodded and poked at the hole in my heart. Some days I wish someone could patch mine, but most days it reminds me to enjoy the beautiful, healing moments and gives me strength during the scary, sad times. Most importantly, that hole holds the memories of those I can no longer hug