Remember these lovelies from Thanksgiving? My dad’s parents, my Popa and Dodie.

Tonight Dodie is not doing well. Today I was called to come and visit because her precious time is ticking away.

I adore my Dodie. She made the simple things seem so very glamorous; eating chips, drinking coke and playing cards in the motor home. The motor home was parked in the driveway but that didn’t matter, it wasn’t the house. We would make up stories about where we would drive….Europe, China, the moon, all while sitting in the driveway in Plano, Illinois.

When we went out for Chinese she didn’t order sweet and sour pork….she ordered shrimp with lobster sauce? Lobster sauce? Is it made of lobsters? My six-year old world didn’t know such a thing existed.

My 7-Up always had cherries.

Making it a glamorous Shirley Temple.

Tonight she is tiny, shrunken, moving onto her next world. She sleeps, breathing tiny little breathes.

I sat by her bed and told her about the time she bought me ruffled underpants and let me eat two hot-fudge sundaes.

I was three. I flashed my ruffled underpants to the entire restaurant.

I think it was one of the best nights of my childhood.

Tonight I placed a lion and frog magnet on her hospital bed and told her Samantha needs a Grandma in heaven to let her eat two hot-fudge sundaes.

She is a good Dodie- dancing on top of her feet at age four, I would look up at her face. I was dancing on top of the world. I was dancing on clouds.

I am 40….and that memory 36 years ago still makes me smile.

Thank you Dodie. Sleep well tonight no matter where you decide to be. Don’t forget to let Samantha dance on your feet.

I love you.

I did it….

I turned 40….

And apparently my mouth grew 10 times its size. Look at that mug! Clearly I’m having a good time; surrounded by my tribe, embraced by the people I love.

I danced out on the floor to I Will Survive with my friend Heather. Heather is a stage 4 breast cancer survivor. Out of the blue, I kissed her cheek (wine makes me kissy) and grabbed her hand….

“Heather,” I said, “we will survive, we will, we have to.”

We looked into each other’s eyes and gave a knowing look….one a mother without her child and one a mother facing a horrible disease. We have to survive.

And then we kept dancing…

I will survive
as long as i know how to love
I know I will stay alive
I’ve got all my life to live
I’ve got all my love to give
and I’ll survive
I will survive

Maybe this is why ancient tribes gathered together to dance, to leap in the air, to feel alive, to feel their heart beating, to forget that tomorrow they might be eaten by a lion, to celebrate.

I need to go out dancing more often.

The candles were lit on my beautiful, 4 tiered chocolate cake made by my lovely friend Charise. As happy birthday was sung, I kissed my husband, “I don’t know what to wish for,” I said.

“Wish for a happy life,” He said. I looked at my tribe, gathered around us, cheering us on through thick and thin, holding us up so many times I feel like I’m walking on air.

“I already have one.”

40….bring it.

Here it is…..

Our Miracles for Mito logo.

Thanks to our buddy Luke Wennik, our graphic designer who has volunteered his time, talent and gave us this logo.

Thanks to my ‘sister’ and new Mito President, Laura who brought us Luke and is keeping us all focused.

We chose the butterfly because it evolves from a catepillar to a butterfly, the way we have all evolved from this disease. We also chose the butterfly because it moves through the air, the wind, it floats between the ground and the sky….it is really not a part of the earth we walk on and everytime I see a butterfly, I think of Samantha.

The butterfly is made up of two hearts.

Because she is always in our hearts.

And because it was her tiny heart that gave out.

The squiggly in the middle of the butterfly is the mitochondria. The reason for this whole foundation.

I love it.

It makes me proud every, single time I look at it.

I’m moonlighting as a freelance writer!

Really.

You can find me here.

You can also find this post today on Hopeful Parents.

On the second day of 2011, I struggle with what this year will mean.

This is our first year without Samantha. What will happen during this year? Will I be expected to move on? Will people forget about our girl? Will people no longer ask?

Who will I be on this first year?

I have recently felt a strong connection to Elizabeth Edwards; a mom her lost her son but never forgot, a woman who held her head high in the face of public adversity. She seemed stronger the harder life became.

So today I googled her and found a wonderful article by Phillip Lister. And I found her thoughts on moving on. And I found how I will move on in 2011.

“After our children die, we need not give up the role of parenting, but now, instead of parenting the child, we are parenting the memory of the child. It gave a strong counterpoint to our culture’s push to mourn and then get over a loss and be done with mourning. It offers an alternative vision of converting mourning into a continuing bond, to grow through our pain and press on with optimism in a meaningful life while still being connected to the one we miss.”

I love this. I love this idea. Because we will never forget, I will never forget. The thought of ‘getting over a loss’ makes me so very sad. And it is impossible. My solace in this world is to move forward while still remembering who Samantha was and how she changed my life.

She goes on to say, “For me it is not about religion. It is about grace. I honestly believe that if we are not enlightened by the death of our children to the frailty of man, we will never be enlightened. And if we do not respond with compassion to that frailty, we have failed a very easy test. I hope that since the death of my son I have learned a few things about what is important. Maybe what guides physicians is a good guide for all of us: first, do no harm … We need only examine what we say to see first if it might do harm.”

Thank you Elizabeth Edwards. Thank you for your candidness. I never knew you but I think I will miss you. You sound like my kind of lady.

She left me with a lyric from Leonard Cohen’s song Anthem:

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in

May I remember in 2011 to let the light in.

A couple years ago hubby and I started a tradition of opening all the doors on New Year’s Eve. This was to allow the old year out and let the new year in. I would cuddle with Samantha under a blanket as the cold air moved through the house.

“Is the old year out yet?”

“Not yet.”

“Now??”

“Wait, the New Year has to come in.”

“Jeez oh Pete.”

Yesterday evening on our way out hubby asked me, “Do you want to open the doors when we get home?”

“No,” I said.

“Really?”

I gave him a sheepish look, “I’m afraid she’ll fly out with the old year.”

“Well then, we won’t. Besides, it’s frigid outside.” He took my hand in his and gave me a smile.

So perhaps the old year is now mixing with the new year within the confines of our house. I leave this year behind with bittersweet memories but I couldn’t put words to my emotions; my dear friend Deana did it for me in an email last night……..

2010 will be ‘the year of Samantha’ to us. It’s the year we met her, Max had his special opera date with her, and the year we said good-bye. She touched our lives immeasurably, and through her beautiful life, we met and became friends

I do hope that 2011 is a year of new beginnings, new chapters, but also of easier moments of remembrance too

Thank you Deana….to a year of new beginnings, new chapters and wonderful friends we have met along the way.

May 2011 be good to us all.

Hubby and I locked up the house for Christmas.

That’s right, I left the rotting Thanksgiving pumpkins on the porch, not a Christmas light or wreath was to be seen from the Schichtel household. We got the heck out of Dodge.

Well, I had one Christmas decoration, a pink and white amaryllis. But it hadn’t bloomed and as we left I figured I would miss our amaryllis blossom this year.

Shooba…..but we do have rotting pumpkins in the front

We spent Christmas with hubby’s mom. It was a restful, quiet, uneventful, chilly, white Christmas in Virginia.

Perfect.

Our trip home was a little stressful. The east coast is under a blanket of snow and the earliest seat available to Denver is Thursday. People have become a bit nasty, sad and angry that they might not be home until Thursday.

And I can’t say that I blame them

I have never been so grateful for a confirmed seat and then… first class upgrade! I felt a little bourgeois boarding the plane early, enjoying a glass of wine and a warm cookie in seat 5B.

Two year ago this time, we huddled in the back of the plane with Samantha as we returned from Hubby’s dads funeral and ate sandwiches Hubby’s mom had packed in a hurry.

The movement from one type of life to another is quite overwhelming.

We got home tonight, opened mail and packages delivered while we were gone. As I opened a Christmas card, I noticed our holiday amaryllis on the table, two perfect pink and white blooms with two more one the way. The subtle pink bloom against the green stalk is fabulous, perfect.

Pink and green, Lil’ Miss’ colors, it waited until we got home to bloom.

It was a lovely welcome home present. Perhaps we were missed. I might just have to get rid of the pumpkins.

Hello Christmas,

I have decided that I will embrace you. This decision did not come easy. Easy would be to grumble in my hole, easy would be a grandiose pity party.

It is tempting.

But the Christmas spirit, the sense of what is important has shone through, bright as that star we see Christmas night.

Darn you Christmas spirit.

Darn you.

I have been embraced by stories of others’ hardship….stories of sickness and sadness and stories of moving on but never forgetting. I love the people you are. My gift this year is you and the raw, true emotion you have shared with me the last week.

Thank you.

Our ability to feel, to show compassion and empathy make us more human than any other trait.

This is my humble opinion.

Hubby and I celebrated Christmas yesterday, just the two of us. He gave me a ruby and diamond encrusted pendant. I pulled it out and started crying.

“The ruby is Samantha’s birthstone,” I said.

“It’s Jack’s too,” he said.

A friend of ours commented this summer, “When you two talk about your kids, it’s like they are here. You both talk about them so openly and let each other share.”

Thank you hubby for being a hubby who celebrates our family, no matter where they might be.

And thank you for the necklace. Bobbles are always lovely.

And the best present, last night I dreamt about Samantha for the first time. She was lying on the floor and I was tickling her belly. Her skin felt so soft and that cherub belly was magnificent. She would bring her hands together, tuck her chin in and smile as I tickled her. I kept thinking, Well you’re not sick, you’re not sick at all.

I have held onto that dream all day.

So darn you Christmas. Darn you for giving me a strong-as-steel support group, a hubby who embraces our family (and gives me diamonds) and for giving me the best present, a sleepy, lovely, memory of our girl. Come by and visit anytime Miss.

I am at peace, perhaps even a little grateful.

Darn it.

As a kid I would watch the holiday classics where Santa got sick and couldn’t fly the sleigh, or decided to cancel Christmas and the Heat Miser took over. Rudolph’s parents got deer-napped by the Adominable Snowman and I would be appalled, scared and outraged.

How could they even consider the thought of cancelling Christmas!!!???? How could they even write about it? Produce a children’s TV show? Simply awful….and terrifying.

Christmas: Santa, presents, treats, vacation, all that is good, innocent and somewhat decadent in childhood.

I am now older and search for meaning.

This year I’m wondering if the Grinch didn’t have it right. Maybe he got tired of being bombarded with tidings of comfort and joy on November 1st. Maybe he couldn’t think of anything good to say in his holiday card. Maybe his Christmas goose was cooked.

I struggle this holiday season.

And in my struggles, I have found others who are struggling too. I ran into one of Samantha’s therapists today who told me she lost her niece two years ago.

“Christmas is always a little sad,” she said.

One of hubbie’s coworkers lost her husband three weeks ago in a car accident. They have two boys. I think of her often this Christmas season.

Bah friggn’ humbug.

I wonder if they feel the same as I do when wandering through the produce aisle and listening to a scratchy rendition of “Have a holly, jolly, Christmas. It’s the best time of the year. Oh by golly, have a holly, jolly Christmas this year.”

By golly my right ear. Don’t you tell me to have a holly, jolly Christmas Mr. Sinatra, don’t even try.

You’re a vile one, Mr. Grinch.
You have termites in your smile.
You have all the tender sweetness, Of a seasick crocodile, Mr. Grinch.

Given the choice between the two of you. I’d take the seasick crocodile.

I have not written a Christmas card. It seems trite. I glance at cards with sweet angels singing, Santas stuck in the chimney, puppies in a stocking…..bleech. You all know how we’re doing. You know what we’re up against. We don’t need a card to connect.

I know you know because you drop angel bags off on our front porch. You hand me cards of holiday encouragement in the midst of parties. You send us notes that make me smile. You hold my hand a little tighter when we are saying goodbye. You look me in the eye.

This means much more than a fruitcake.

So please excuse my bout of holiday disdain. This year is about survival, about not throwing the TV through the window when seeing another miracle child from St. Jude, about searching deeply to find the meaning of the season and this year is about missing our girl.

Today I saw my sister-in-law who is having an awful week.

“Hold my hand,” she said, “hold it tightly.”

“Thank you,” I said squeezing her hand, “I just don’t feel the spirit of the season.”

“This is our spirit,” she said, “right here, right now, holding each others’ hand.”

I took her hand and kissed it.

Merry Christmas my wandering, searching souls. My we all find some peace.