Month: December 2011

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