Samantha's Mom

Lunchtime Topics

2012-01-26T20:19:00.003-07:00

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.

Expectations

2012-01-24T17:12:00.002-07:00

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.

I still have a dream

2012-01-15T21:52:00.004-07:00

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.

What Lies Beneath

2012-01-11T21:30:00.002-07:00

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.

The Plunge!

2012-01-08T17:24:00.006-07:00

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 So This is Christmas

2011-12-27T21:08:00.002-07:00

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

Movement

2011-12-14T17:40:00.003-07:00

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.

Heart

2011-12-05T21:07:00.004-07:00

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

Free Range Tom

2011-11-21T22:58:00.002-07:00

I like Thanksgiving

I like any holiday that involves food and gratitude.

Hello Thanksgiving.

I am hosting this year and tonight I found myself at the grocery store among the Butterballs, the Jennie-O’s and the Pilgrim’s Pride Turkeys. The advertisement on the outside wrapper said they have all been injected with buttery sauce to make them extra juicy. Personally, if I were a turkey, I do not want to find myself with 20 other turkeys, injected with buttery sauce.

I felt sad for my fellow turkeys.

“Do you have any free-range turkeys?” I asked the butcher.

“They’re over here. I think we might be sold out, oh here’s one. They are really expensive so we don’t order a lot.”

I looked at the last free-range Thomas; the $50 free-range Thomas. Hi s cousin was only $15.00 and injected with buttery sauce. His cousin was a bargain but I pictured Thomas on a free-range turkey farm, wearing turkey tevas and doing laps on the turkey track.

Perhaps Thomas was happy.

Silly thought, Thomas is a turkey, a domestic turkey, who perhaps does not care if he is a free range, teva-wearing turkey but these are things I want lately.

Because I can; we can afford a $50 organic, fed-on-organic-turkey-feed only- turkey. We are not paying for college or day care…..not anymore.

And in some little way, organic Thomas makes me happy so I put him in the cart.

I go through the grocery store with my list and find myself at the pharmacy filling a prescription. I know the pharmacist well she filled Samantha’s meds many times. When we could not find Samantha’s elite, non-generic seizure meds, this pharmacist called around the state to find what Samantha needed.

Tonight she greets me with a warm smile, fills my prescription quickly and asks me how I am. I smile back and tell her I am just fine.

I introduce her to Thomas, my organic turkey.

Ironically, I fill a sense of calm as I shop for Thanksgiving. I put together a bouquet of Fall flowers and I realize I don’t have my re-usable bags. I leave my cart to run to my car and get my bags.

Because I can; I have all the time in the world.

Hubby can wait for dinner. It is just us and he can wait while I run out to make sure our plastic bag collection doesn’t grow larger.

I load Thomas the organic turkey, my prescription and my reusable bags into the car and run my cart up to the young man collecting carts.

Because I can, I have all the time in the world.

There are certain times when I feel that she is right there.

As I start the car, the song If I Die Young starts to play. This song came out right about the time that we lost her. I feel a silent sense of protest every time it plays on the radio but something about the lyrics soothe me.

Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors
Oh, and life ain't always what you think it ought to be, no
Ain't even gray, but she buries her baby

A penny for my thoughts, oh no, I'll sell 'em for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singing
Funny, when you're dead how people start listening

I go home, put Thomas in the fridge and have a slice of pie made by hubby’s co-worker:

“I am thankful to work with you,” says the card on the pie.

It is tasty pie.

Life is never what we think it will be but maybe if we notice the tiny places of gratitude; if we refuse to be injected with buttery sauce, we return our shopping carts to their proper places and recognize when the world is trying to reach out to us, Thanksgiving might be just be……Thankful.

Mexicoma

2011-11-13T21:26:00.002-07:00

I fell off the face of the earth again.

This time more physically than mentally.

Hubby and I took a week in Mexico; our second big trip since we lost Samantha. This trip felt much more relaxed- not necessarily something that we had to do in order to move on without her but time that we needed to spend together, enjoy each other and just be.

It was good...just to be and to be with each other.

We recently attended a wedding where the best man said to the newlyweds, "if you decide not to have children, decide to become each other's child."

What an interesting thought; to take care of each other that deeply and wholeheartedly.

Sometimes it feels as if Hubby and I are dating again, getting to know each other without the expectations of what we thought would be our life, getting to know each other with our loss and getting to know each other as just each other.

It's dating again with a deep understanding of who the other person is. Dating, while knowing that he will silently reach for my hand as we walk by a father playing with his daughter on the beach.

Knowing where the hurt is without saying it; covering up the boo-boo and sealing it with a kiss.

Perhaps at times we all need to be each other's child.

PS- pics to come as soon as I clean the sand out of my bathing suit :)

Dragon Mom

2011-11-04T22:31:00.002-06:00

I am cheating today. I am posting words that are not mine.

But Emily Rapp, in her ultimate wisdom, has posted what we all think and continue to think even after we have lost our child. This journey is and continues to be, the ultimate, tragic, love story.

Notes from a Dragon Mom:

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no.

The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom.

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves.

We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be.

This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

BOO!

2011-10-31T20:22:00.005-06:00

Happy Halloween!

I'm not a huge Halloween fan. The pressure of a costume, nasty, nasty candy corn, the color orange....eh, I can take it or leave it.

I DO miss dressing up Samantha in some crazy adorable outfit; maybe that's the crux of it....darn you Halloween and your cute bunny rabbit costumes.

Every year my friend Jill takes an entourage of ladies on a haunted house tour. I went two years ago but last year decided to pass. I had seen enough of death and I felt a bit like a zombie, thank you very much.

This year I said that I would go.

And I questioned my decision.

I had a conversation with myself in the mirror as I geared myself up for an evening of creepy crawlies and half-dead actors.

"Isn't your life traumatic enough? Why are you going on a haunted house tour?"

So I thought about it.....

And I started to laugh.....

"I am going on a haunted house tour because Zombies ain't got nothing on me."

What do we fear in a haunted house? We fear the unknown, the unexpected...

Unexpected?? Sign me up.

We fear being afraid.

We fear the dark.

I realized I had dealt with these fears for the last five years and as a result Frankenstein is a pussy cat.

So I went with my friends and screamed when the creepy man chased us around with the chainsaw. I ran around like a crazy chicken when the mad doctor followed us through swampy, abandon hospital ward. At the end I found myself laughing hysterically.

It was kind of fun to be scared and not have it mean anything at all.

Go ahead....give me your worst crazy witch lady. I double, dog dare you.

At the start of every tour, the guide would say, "Don't touch the monsters and they won't touch you."

Can't touch this? Ha! Bring on the monsters.

In the end, real life on a bad night is much more unexpected, can be terrifyingly real and sometimes, yes....the monsters can touch you.

Haunted House? It's a piece of candy corn.

Candy Corn? Now that's frightening

For everything you've done, you know I'm bound, I'm bound to thank you for it

2011-10-24T22:11:00.006-06:00

This post is from the amazing Martin Family. When I think of the good things Samantha got from preschool I think of Caroline and Max and the very special gifts they gave us.

Samantha had a 'dalmation' coat that was spotted. Max would meet her at the preschool door saying 'Puppy coat! Ruff, ruff! Puppy coat!' and he would help take the coat off.

I still cannot give that coat away.

I never knew two small children who knew my daughter....loved my daughter they way that they did.

What Mom, sweet Rebecca does not mention in her post is that their fabulous party raised over $500 for our foundation.

Two sweet little people decided to forgo their birthday presents and raise this money. My favorite, most-enduring story is that Max did not want to give us the money. He wanted to wait until he was an old man, until he went to heaven. He wanted to give the money to Samantha himself.

I am amazed.

I think maybe we all saved each other. In Caroline and Max's world, Samantha has not gone anywhere, she is a fairy, a smile, a rainbow, a bit of light and they carry her in her heart everyday. In my world, they remind me to live my life with her, on my shoulder everyday...to embrace who she was and the joy she can still bring.

Thank you Martin Family- this is their post....and this is the Martin family, could they be anymore beautiful?

Dear Miracles for Mito,

Two years ago I carried my son Max into a special needs preschool for the first time. I carried him because even at almost three years of age he lacked the energy and coordination to walk very far. There was another child being carried in that day. She was a few months older than Max, but she looked much younger. She was cradled like a baby in her mother’s arms. She could not sit up or hold up her head very well. I watched them.

The mother, Heather, looked so pulled together, so happy, despite what was obviously a very tough situation. I felt embarrassed. Here was someone dealing with so much more than I was and she was handling it so well! What was her secret? I wanted to talk to her. I was desperately lonely in our world of unknowns. But I could not talk to her, I didn’t know how.

The months went by and my older daughter Caroline fell in love with that little girl, sweet Samantha. Every day at pick up she would go over and sit near her and watch her. Sometimes she brought things to show her, even though she was not sure if Samantha understood. Caroline connected with Samantha in a way I will never quite understand, they just clicked. Max too loved Samantha, he shared his mornings with her for a whole school year. Every day he would report to me if Samantha had cried. “Antha cried.” He would say with the saddest look on his face. He was so concerned for her. I was told later by Heather that he even tried to stop her from picking up Samantha’s wheel chair one day. He was not sure who Heather was and he was not about to let his dear Antha’s chair be taken away.

Finally in the Spring I got up the courage to talk to Heather beyond the small chit chat that happens in the school doorway. Max was due for an MRI and a Spinal tap at Children’s Hospital and Samantha was there at the same time. Samantha was hospitalized due to another of her many medical battles brought on by mitochondrial disease. Heather took the time to talk to me and my husband as we waited for Max to get out of radiology. I had meant to be there for her, to try and be supportive of their situation, but she was the one who was there for us. We agreed to chat more and to get together.

When Samantha was out of the hospital they came over for a visit. Caroline stayed by her side the whole time. The very first book she read on her own to anyone was read to Samantha that day. Meanwhile Heather talked with me and encouraged me. Heather understood, like it says on the Miracles for Mito web site: that no one should ever walk this journey alone. By that time we knew that Max had a rare metabolic disorder, but we also knew there was a treatment and that he had a positive future. I was slowly finding my way and accepting that we were on a different path in life and that it was ok to be on that path. Maybe I too could be that pulled together woman walking into preschool with a smile on my face.

It was only a short month later that Samantha passed away. It devastated me beyond description. Samantha and her mother had changed us. They had loved us and encouraged us even when their own plate was full to overflowing. Samantha had touched my children in the most beautiful way. They adored her. Heather and Samantha had shown us how joy is to be had even when life is tough. They gave us a gift of a new way of looking at life’s trials.

We wanted to give a gift back to them. My husband and I had planned an early birthday party for the kids to try to take advantage of the nice weather. I asked Max and Caroline if they would like to forgo presents to raise money for something that could help other children. I gave them choices; I wanted it to be their decision. Without hesitation they both agreed that they wanted to raise money for Miracles for Mito. In the past year it was a rare week that went by when one of them had not mentioned Samantha.

The party was a true celebration for our family, it was about more than just birthdays. It was about the journey our family had taken over the last few years. It was acknowledging our fresh perspective on life. A perspective that Samantha herself had deeply impacted.

We no longer walk alone and we don’t want any other Colorado families to have to walk alone either. We are honored to pass along the birthday generosity of our friends and family to Miracles for Mito to further that goal.

Thank you,
Rebecca, Ray, Max and Caroline
www.waitingroomlife.com

The Boundary

2011-10-21T16:31:00.002-06:00

Today I am posting on the Get Born blog. It's interesting posting on a parenting site but if you know Get Born, you know it's not your typical....'how-to-make-paper-mache'-pumpkins' site.

Get Born can be a little meaty.

Pass me a drumstick :)

What You Must Know

2011-10-19T21:36:00.003-06:00

I think my last post scared some people....

Or made them worry.

But here is what you must know....I can't continue this blog without being perfectly honest, pouring my heart as if I have no audience and working through this nasty business of grief. So let's get to it.

My Auntie Trace sent me this poem a couple weeks ago. I have spoken of Auntie Trace often- she makes the most amazing brownies and she knows kindness...through loss and through love.

I am grateful that she is there to tie my shoes and go with me everywhere like a shadow and as a friend.

Kindness: Naomi Shihab Nye- 1980:

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 everywhere like a shadow or a friend.

Colombia.

It's All Good Heather

2011-10-13T19:09:00.004-06:00

Hello.

I'm back.

It's been three weeks and I have missed you.

I've thought long and hard about why I left for a while and can give you a very long, detailed list....work, hubby, eye brow waxing, belly button lint collecting, making a sweater from said belly button lint, remembering to inhale, forgetting to exhale....remembering to exhale.....long, hard exhale.

But here is the truth.

Grieving sucks.

Not only does it suck...like math homework and cleaning the toilet but it SUCKS, it sucks the very life out of you. It reminds me that I am a fragile person, that I am not as strong as I think I am. It drinks my mental and physical reserves like honey and then smacks it's lips and asks for more.

Bastard.

And I have realized that when work seems out of sync, life seems out of sync, hubby and I seem out of sync, that I have no reserves to draw on. I hide in my little toe while my alter ego, 'It's-All-Good-Heather' tends to my basic life support, toileting, the brushing of teeth, combing of hair, the inhale and the exhale. She is a good care-taker.

It's-All-Good-Heather searches for my big girl pants only to find they are at the cleaners, she gathers reserves in tiny droplets....like collecting morning dew in baby leaves, she finds things that bring laughter and joy to draw me back out of my little toe.

It takes a lot of work- I can be quite stubborn- therefore It's-All-Good-Heather has no time to blog....nor would she want to......topics seem silly when I hide in my little toe and she must worry about making sure my hair is brushed.

So that's where I have been; hiding, gathering reserves, searching for joy in tiny crumbs and fighting that bastard Grief within the confines of my baby toe.

Fighting Grief in the baby toe is tough; it's crowded, dark and particularly stinky when I wear my Keds with no socks. The good news is that there is no where I can hide and there is no where Grief can hide. It's like High Noon.

I worried about telling you where I was. I like to be happy. I like to find joy. I like it when I like my life. But it isn't always the truth and I know, know, you can handle the truth.

Deana's Post- Mitochondrial Awareness Week

2011-09-21T09:14:00.002-06:00

Have I mentioned how lucky I am to be surrounded by smart, resourceful people?

Here is Deana's post. Full of great, great information on Mitochondrial resources.

Thank you Deana!

Jacob- For Mitochondrial Awareness Week- by Maria

2011-09-19T21:45:00.006-06:00

Tonight's post is from our Vice-President and Mom-to-Jacob; Maria.

Jacob and Samantha were very similiar in thier presentations. I am often reminded of Samantha when visiting Jacob. Here is their story:

I often get the question “tell me about your son Jacob”. This is what I would tell you, if you are…

His Doctor:

Jacob has an unspecified Mitochondrial Disorder with deficiencies in Complex I and Complex IV. Jacob’s primary issues are epilepsy and his weak respiratory system. Jacob has severe epilepsy that is not fully controlled. Jacob’s seizures are divided into the following categories: Grand Mal, Complex Partial, Staring Spells, and Myoclonic Seizures. Jacob also has Oculogyrical crises, which are currently fully controlled. Jacob has several movement disorders (chorea, dystonia, and myoclonus), all of his movement disorders are controlled.

Jacob aspirates, and uses his g-tube for all food and medications. Jacob has central sleep apnea, and uses a bi-pap at night. He also uses oxygen as needed during the daytime. Jacob has low muscle tone, and needs full support of his body at all times. Due to Jacob’s weak respiratory system, Jacob uses a cough assist and vest treatments 4 times a day. Jacob gets nebulizer treatments 4 times a day, and is on Tobramycin every 2nd month to prevent pneumonia.

Jacob has global developmental delays. Jacob is non-verbal. Jacob has good hearing and vision. Jacob is not in pain. And I am sure I am forgetting several things…

His Teacher:

Jacob loves school. Jacob has always loved being surrounded by people, and kids are of course the best! The goal for Jacob in school is for him to be with kids his age. We are not looking at educational goals, e.g. reading, writing, and math. We simply want Jacob to be with other kids, and do as many things he can with his buddies.

Jacob loves music, loves having books read to him, loves going on the swing, loves doing an art project with the help of his teacher, loves playing with play-doh, and loves playing with finger paints. His new passion is Orbeez, which he very much enjoys to dip his hands or feet in!

Jacob loves when his friends take him in his chair around the classroom, to the gym or to the playground. Jacob loves playing with balls on the playground! Jacob is hoping he can be in school as much as possible during the school year, so if everybody could wash their hands carefully and stay home if they don’t feel well, Jacob can stay out of the hospital as much as possible.

His Therapist:

The only proven treatment for Mitochondrial Disorder to slow down further damage to the patient’s Mitochondria is exercise. It might be contradictive, since someone living with Mitochondrial Disorder is low on energy, and exercise will of course use up energy, but low energy exercises are very beneficial to Jacob. If you are not using your muscles for a while, you know what I am talking about. I remember how quickly I lost my muscles in my leg after my knee surgeries.

Therapy is therefore key to Jacob’s health. We want to work on Jacob’s range of motion and flexibility at all times, since Jacob needs help to move from each position throughout the day. We want to work on sitting. We want to get in the warm water pool at school each week to give Jacob as much freedom and movement of his body as we possibly can!

And speech therapy - how do you do communicate with a non-verbal kiddo? It is definitely not a challenge for every speech therapist, so we feel so fortunate to have a speech therapist, who is willing to work with Jacob on finding ways for him to communicate. We know that Jacob knows how to make choices with his eyes. Jacob also moves his lips to verbalize, and from time to time, we also get a vocalization. Jacob also has very subtle communication with how he moves his head, and how he uses his whole body to communicate if he doesn’t like a certain thing.

Jacob smiles when he is feeling good. Our speech therapist thinks outside the box, and doesn’t think that verbal communication is the only way to communication – and isn’t that true for all of us?

Our Friends and Family:

Despite Jacob’s Mitochondrial Disease, that is not the thing I want to tell you about Jacob because it is not what defines him. Jacob is the toughest and bravest kid that I know. He has a connection to life that I knew very few have. He has been close to death several times in his short life, and every time, he has decided to choose life. He has decided to fight against all odds. That is why Jacob’s illness is not defining him.

He is a kid who needs tremendous support and help in life, but he is at the same time someone who has a full life. He is very loved. Not just by his family, but by so many people around him. Despite Jacob not being able to talk, we close to him can see all the ways he communicates with us. He is a kiddo who goes to school, who works on his therapies every day of the week.

Jacob has dinner with his family every night, he plays in the pool in the summer. Jacob loves reading, cuddling, music, and yes his weekly massage! I am jealous every Wednesday morning when Jacob gets his full body massage…Jacob just sighs out of pure content.

It is Mitochondrial Awareness Week. I could write lots and lots about what Mitochondrial Disease is and what it does to a child and family living with it, but the message I want to leave you with today is that despite this disease, the basic needs of life is the same.

Independently, if you are a doctor, a teacher, a therapist, or simply a friend of Jacob and us, please try to see beyond the disease, and see the person Jacob is.

With love,
Maria HopfgartenVice-President, Miracles for Mito

Mitochondrial Awareness Week!

2011-09-19T07:05:00.002-06:00

This week is Mitochondrial Awareness Week. In honor of this week, we have a different blogger who will post about their life with Mitochondrial disease on www.miraclesformito.org. I will also share these here.

Here's mine from yesterday:

I have thought a lot about this post and what I want to say....the importance of advocacy, the needs of our children, how I have lost a child to this disease but that it is important to 'carry on'.

Here's the real scoop..... Mitochondrial disease sucks my left toe.

I hate it. I hate that it has taken my daughter. I hate that we fought seizures, muscle weakness, slow gut, urinary tract infections, MRSA, pancreatitis and numerous other problems.

I hate that my husband and I are perfectly healthy but some crazy recessive genetic disorder prevents us from having perfectly healthy children.

And I miss my daughter, Samantha every single minute of my life.

But outside of my grief and anger, I have found an amazing community, a community that has sustained us during and after Samantha's short life. This community has not been easy to find. Mitochondrial disease is horribly under-funded and under-supported in the medical community. It is a disease that is hard to diagnose, difficult to control and there is no cure.

Blech.

But along this fight, I have found doctors who have said "I do not have the answers but I will do what I can to make you daughter live the very best life."

And I have found friends with other mitochondrial children who are grateful to talk the idiosyncrasies of respiratory toileting and rectal valium. And they even have time to laugh about it.

This week is about those friends, the community we have found, the love and the fight for our families. This week is also about spreading the word about this disease, finding help and advocating for our loved ones.
Every day, we will post something new, a different family, a different fight, a different hope.

Welcome to Mitochondrial Awareness Week

Sincerely,

Heather Schichtel

Founder/Director of Miracles for Mito and Samantha's Mom

First Mitochondrial Day in Colorado!

2011-09-14T08:52:00.002-06:00

I am continually amazed and humbled by what people can do we when band together.

Thank you to everyone who made this day possible: Mito Day in Colorado

To Remember

2011-09-11T21:52:00.002-06:00

This evening I listened to an interview with a mother who had lost her daughter in Tower 1.

Her concern was that as time went on people would forget what happened on 9/11 and people would forget her daughter. I understand this, as time moves forward, I think about Samantha everyday but not everyone does. As the years go by will people forget our amazing little girl?

I did not know this woman's daughter but I do remember that day and the days after. On 9/11 I sat in a waiting room about to start my new consulting job in Summit, New Jersey. When my manager came to get me, the first tower had been hit.

His wife worked in Tower 7 and was on her way into the office.

Summit was a commuter city and had been hit hard. The cars at the train station had marks on the tires as to how many days the car had been parked.

1 day

2 days

3 days

Was this person coming back?

I was stuck in Summit for 10 days. I didn't know anyone aside from my new co-workers who were grieving lost family and friends. On Friday, I took the train into the city to see my friends, Scott and Laura, to get some type of human interaction, to hug and cry.

I will never forget the acidic smell of the city. The dust that had settled on everything. The posters! The posters of missing loved ones everywhere, papered through Grand Central Station. Lovely, sad pictures of people enjoying their lives, mothers, fathers, daughters, sons....people who were now missing.

I will never forget the prayer rally in the park five days after the towers went down; Buddhist monks chanting, drums beating, people singing and lighting candles, people praying, people trying to make sense of what just happened only to realize, there is no sense.

Ten years later, I can still smell that smoke when I think about that day.

I did not know this woman on the radio. I did not know her daughter but I do know the events of that day are forever in my mind. They have helped to form the person I am today.

And for me, as another grieving mom, I realized that even though people don't think about Samantha everyday, to many people, who she was, has changed who they are; her sweet gummy smile, her tenacious spirit, the mystery of her tired body and her lovable personality.

Perhaps remembering isn't always thinking about the event but how what happened changed us, made us think of the world differently, hold our loved ones closer, be less quick to judge. I can't think of a better way to memorialize a life.

United Flight 203 to LaGuardia

2011-08-30T21:48:00.002-06:00

Airplane travel still continues to crack me up. I always feel like I'm a bit outside of my body when I travel.

I also feel like people are a bit out of their mind when they travel. It is quite the observation on human behavior.

And certain things still crack me up.....

There is the flight attendant who wears earplugs during the flight and talks 5 decibels above what is necessary....

"Would you like a drink????"

"Club soda please."

"WHAT???"""

"Club soda."

"I'm sorry we are all out of Pringles."

"Never mind."

"Here's your apple juice."

Lovely.

And the man.....the man who leaves the seat up on the airplane toilet.

The airplane toilet!!!!

As if it weren't' bad enough with that blue stuff in the bowl and bad smelling hand soap.

He left the toilet seat up.

Bastard

And I think....he must do this at home....because who does this???? Who leaves a toilet seat up for strangers????

In the lovely lavatory, I lean myself up against the door, hike my suit skirt up and use the tip of my heel to kick the seat back down. Who knows what is on the nasty thing.

I curse my small bladder.

Curse you small bladder!

There is not enough Purell to combat the bathroom lavatory, especially when the seat has been left up.

But there are also times when I have found a good restaurant while waiting for the next leg. I sip Shiraz and munch bruschetta because there is nothing else to do. I find myself introspective and observant while waiting for a United flight to take me somewhere.

I hate to admit it, but I kind of enjoy those times.

Maybe I'll get some Pringles.

What is the Call???

2011-08-25T22:42:00.003-06:00

It would be easy to give up the fight.

Because it doesn't really matter.

I don't have to go to Children's.

Because we don't have a child who needs to be there.

It would be easy to turn our back on our mito cause.

Because we no longer have a mito kiddo. What difference can we make....really?

But every time I feel overwhelmed, insignificant and uncertain of the next step, someone reaches out and reminds me why this is important and why we fight to raise awareness, money for research and education.

Because mitochondrial disease sucks my left toe.

A 26 year old mom reached out to me last week and introduced me to Mabel. I hope her Mama doesn't mind me posting but this little one-year old is so stinkin' cute and her mom is so very honest and determined in this tough, hard fight.

Welcome Mabel and Mabel's Mama. You make me want to be a better advocate, to fight harder and remember that our own Mito girl is not here in body but certainly in spirit.

Thanks for the kick in the pants.

The Path

2011-08-20T08:40:00.004-06:00

You cannot travel the path until you have become the path itself
- Hindu Prince Gautama Siddharta

This week I found myself in Beaver Creek, Long Island Sound, Manhattan, Houston and now I am resting my hat in Santa Fe for the weekend.

As I passed from place to place, airport to rental car, ocean to desert, I became more introspective. Nothing makes you contemplate life like sitting in an airport, watching the world go by.

I now I sit in a Santa Fe cafe and watch tourquoise clad tourists in cowboys hats (admittedly, I am one of them).

I was here last year, just weeks after we lost Samanta, searching for some thing, some way, some guidance onto the next step. I collected holy dirt, I prayed, I got my body massaged, I praticed the fine art of retail therapy and I searched.

It is a year later. And although I am still searching, perhaps I have found solace in the crazy comfort that I will always be searching.

I don't know if I will ever trust the path; it can change so quickly. The best laid plans are only that, plans.

But a year later I trust that my footing is sound and my gait is solid. I guess that is all I can rely on.

And I still find myself collecting holy dirt, and praying.

I didn't cry this year until I hung a Ben's Bells at the Sanctuario de Chimayo. They are so lovely, our Ben's Bells, so simple and perfect with their message....

Be kind

Be kind

Be kind

I hung it on a tiny tree in the middle of the sanctuary and hoped that someone who needed it would find it.

As I walked away, I heard the sweet, tiny chime of the bell in the desert wind. It was then that I started to cry for the simple beauty Samantha has taught me, for the people she has brought into my life and in the relief I found after a year.

And I sprinkled a little holy dirt on the bell, for extra-good juju.

And then I sprinkled a little on myself.

My little author's note: I have had the most amazing people reach out and post the last couple weeks. I wanted to thank you. I am so very happy we are on this journey together.

Saturday Diddy

2011-08-13T15:39:00.004-06:00

My lovely neighbor and friend has convinced me to join a blogger contest!

The topic is: Who is the person you are most surpised to be friends with?

And it has to be 300 words or less- that's not a lot of words for a blow-hard such as myself but I tried to keep it short.

And I thought I would share.....

wish me luck :)

The Most Surprising Friendship:

Lonely, isolated, angry, misunderstood, denial…..words only touched the surface of what I felt when my daughter, Samantha was diagnosed with her disease.

Mystery, prognosis unknown, medically fragile, were the words her doctors used.

My beautiful daughter was six months old when she was diagnosed with rare, fatal muscle disease. I had quit my job, researched endlessly and felt incredibly lonely. I started a blog to pour my deepest fears and darkest emotions. Through that blog I met three other women who all had children with rare, fatal muscular diseases.

We emailed for a while, passed each other supportive remarks and one day decided to meet. In that first meeting, we were instant friends; we clung to each other like abandon sailors on a lifeboat. My new friends knew about uncontrolled seizures, respiratory toileting, manual catheterizing! They knew our doctor! They knew Samantha’s neurologist! They too had processed the hurtful painful words, respite, hospice, hopeless, helpless, and fatal.

We cheered each other in our unique ability to take on doctors, nurses, feeding tubes, seizures, 20 different medications to be coordinated in one day. We cheered our children, each precious, fragile child.

We had found a safe haven in our journey.

My daughter was the first to ‘go’. She took her last breath a year ago. And my special needs family gathered closer around me.

I lost my girl. I am a very real reminder to them that they too, could lose their child at anytime. But they have provided a secure sanctuary where I can celebrate, mourn and talk about the child I had and the mother I was. They celebrate every butterfly they see, every tiny reminder of my daughter and the miracle that we would not have met without our sick, precious children, and that is a true gift.

Our Courage Classic Preview!

2011-08-07T22:55:00.004-06:00

Samantha's Nonnie put together a preview of our Courage weekend!

Click on the link!

Makes you want to see the full length version and then sign up for next year!

Doesn't it?

huh?

Next year?

To be so Lucky

2011-08-02T22:07:00.008-06:00

My lovely friend Inda played a song at our wedding- it was her song...

To be so lucky to find true love,

To be so lucky to find my way,

Be the thirst

Be the rock

Be the hope

Be tomorrow

Be so lucky to find.

People may not find us lucky. People may find us sad. At times, I may find us sad. But I have indeed found my thirst, my rock, my hope, my tomorrow

Yesterday I got to give money back to the people who saved Lil' Misses life so many times. People who loved her. In this world of crazy, litigious, who-is-to-blame-why-can't-you-do-more world of medicine, these doctors loved my girl.

And they loved us and we loved them

And it felt good to give back

And lucky

And that I had found my way, along this crazy path

But it was only because of you all who had given so generously to our cause, that we were able to give back to The Children's Hospital.

And I thank you.

Our check to Dr. Collins and Mitochondrial Clinic.

Presenting our check to the famous Dr. E. I love her face here. This woman can take on the entire Children's Hospital and not be fazed. I think she might be fazed

Dr. E, Maria, Sweet Sarah, lovely Jacob and myself.

It is good to be here- to find my way

Full

2011-07-26T21:29:00.005-06:00

Our life is full.

But there are holes, holes where Samantha would have been.

So we try and fill the holes; trips to Hawaii, ski vacations, weekends away....

Is it enough?

Does it fill where she should be?

The answer this year has been 'no', it is good, it is welcome, but it does not take away the ache, the vacancy of where she should be.

But this weekend, ironically, the one year mark of Samantha's passing, I felt full, grateful, happy and satisfied for the life we had with our girl.

We rode with the Courage Classic, the annual bike ride for the Children's Hospital.

It started on Friday, the day of registration. I waited for my packet and stated my name while still talking on my phone (important business call). The volunteer brought me my packet....

"Number 41!" she cheered

"41!" Exclaimed the volunteers.

I stopped my phone conversation, "What?"

"You were the 41st highest fundraiser last year," she said. "Congratulations"

Inside the bag was a plaque that said "#41", I got tears in my eyes because the only, only reason I was 41 was lill' Miss and her supporters.

Thank you.

The ride went on without issues, we made it up Vail Pass, Battle Mountain, Swan Mountain. We rode with purple and green ribbons in our helmets. We rode with our "Summits for Samantha" jerseys, her smiling face on the back.

When not riding we sat in the hot tub with a glass of wine and ate yummy dinners (we did ride 50 miles a day after all!) ....it was a good weekend.

On Monday, I rose with apprehension and looked at my watch, 6:30....a year ago she was still alive.

At 8:00 we started up Freemont Pass, I was grateful for the clear sky, my pounding heart and a chance to clear my head.

8:00, she was still alive.

I felt a burning in my legs, my lungs and my heart as I continued to ride....looking into the sky for s sign of her.

At Freemont Pass, we stopped for a picture of our team and a man approached me, "I'm looking for Heather," he said.

Ironically, I was standing next to my friend, Heather and still trying to catch my breath.

"Which one?"

He looked at me confused. Heather pointed at me, "She's the important one."

I looked at her, "Oh I am not important, you're important too."

The man sighed, "Which one is the important Heather???"

"I guess I am," I said.

"My wife told me to give this to you." And he pulled out a gold box from his riding jersey. Inside the box was a pendant with Samantha's and Jack's name and the birth date on the other side. It was beautiful, heartfelt and perfect.

I started to cry....ugly cry....and hug this poor man who had never met me....stinky long hugs....poor guy...and my team cried and hugged this poor man.

"We know today might be hard," he said.

Thank you poor man who dealt with my stinky, ugly cry. I never got his name.

11:00, we had lost her

My friend Jill did this ride for the first time; after day one and two she said she that it was great but would not do it again.

On day three she said...."I get it. I have been so in my head, so afraid I couldn't do this or keep up with the team but today I saw someone going up Freemont on a hand cycle, and a team on a tandem and told them good job, and they said the same and I thought 'what the f*$# is my problem? This isn't about me. This is about the kids who live everyday just to be here."

I love this ride.

At the finish, I saw 'Grandpa Jim' who volunteered for Team Courage this year. He rode a tandem bike with his 15 year old buddy Abe. Abe has Cerebral Palsy and cannot do this ride alone.

Jim rode with Abe 120 miles this weekend.

As we all crossed the finish line, I thought, we would not be here without her. We would not carry Abe 120 miles, we would not have organized a team to ride 150 miles for Children's Hospital, it would not have meant enough as it does now.

And I felt full....of love, gratitude, and overall yumminess of who she has made us and the community she has brought together.

And that was enough. I felt full.

Thank you Lil' Miss

Post from the Past

2011-07-18T21:33:00.002-06:00

Happy Birthday Lil' Miss....

We have made it through another anniversary date and we brace for the mark of one year.

As we move through the days, I thought I would re-post an oldie but goodie because through all of this, one thing remains....

Gratitude.

The Blessing Bowl:

July 14, 2007. Numerically it’s a very good day. 07-14-2007, fourteen is divisible by seven and two times seven equals fourteen. I figure this is a sign of good luck. I’ve been doing this lately; looking at long strings of numbers to see if they could divide into themselves. I’m not sure why. Maybe my brain is thinking of ways to keep itself entertained. Regardless, it’s a good date. I like the number seven. It’s a good prime.

This day fell on a Saturday. The day that we were going to celebrate my daughter’s first birthday. She doesn’t turn one until the 18th but Saturday’s are easier to get the family together and I liked the numeric’s.

Samantha’s birthday has been the cause of some anxiety for me. It’s a mixed bag of emotion. I am thrilled that we are celebrating a year of her life but saddened at how hard this year has been for all of us, especially Samantha. We have spent 61 days in the hospital, two flight for life helicopter rides, numerous 911 calls and late night trips in the ambulance. Well, Samantha rode in the helicopter. My husband Bart and I had to follow in our Malibu station wagon, dodging traffic and cursing at slow drivers as we rushed to keep up with the chopper. Helicopters go faster than cars, especially in rush hour traffic.

How do you celebrate this year? I knew how I didn’t want to celebrate. I didn’t want kids her age running around as a reminder of where she should be in her development; playing with her toys as we watched and hoped Samantha didn’t have another seizure. This may sound bitter but I’m the mom and I knew what I was able to handle. No toddling toddlers.

We did need to celebrate. But to have a party and pretend like nothing happened this year didn’t seem right either. Samantha had been through hell and back in her first year of life. We needed to commemorate that.

We kept the party just to family which still turned out to be quite a gathering. I frosted 16 white cupcakes Saturday morning. Well, really 20, my husband ate 4. As I prepared chicken and brats for our barbeque, I felt a sense of peace overcome me. We made it. Our daughter was still here, kicking at her toys on the floor. Our marriage was still intact despite all of those times I was tempted to take off in the Malibu for Mexico. All of those things were worth a celebration.

To honor Samatha’s first year, I had asked people to bring a trinket, a stone, a poem, something that brought them peace or felt good to them. Samantha didn’t need another toy. Samantha needed good juju. I went upstairs in search of a bowl for her well wishes and noticed my great-grandmother’s sewing box. It was made from pine and had a heavy wooden handle. I imagined my great-grandmother toting it from room to room as she quilted or mended socks, sitting peacefully in the corner. She was a lover of children and stray animals. I knew Grandma Burbank was out there, looking over Samantha. I opened the top and inhaled the musky scent of the past. Thread and yarn were wrapped around tiny sticks to keep them from knotting. There was an old rusty Sucrets box filled with buttons still waiting for a shirt. No, I thought. This is not the right container for Samantha’s trinkets. Too much history.

I looked around the room and found another antique of Grandma Burbank’s. It was a simple bowl, the color of sand. Hearty, solid and held the test of time, just like my great-grandmother. Perfect. I carried the bowl downstairs and set it on the table.

I ventured outside to my garden to find my contribution to the blessing bowl. I love my garden. I am continually impressed with the cycle of life perpetuated every spring. I plant tiny seeds in the dirt and they turn into beautiful zucchinis or luscious tomatoes. I found a rock that was smooth all over except for one small side which was jagged and coarse. Perfect, I thought. Samantha’s bumpy beginning…the rest of her life will be smooth. I held it in my hand. It was warm and felt right. I also snipped a bloom from the lily I planted the summer my husband and I were married. The bloom was a buttery yellow with brown spots on the petals. There were three petals, for the three of us in our family.

I was on a roll. I bounded upstairs and found the small, pink, baby bootie charm I wore religiously when I was pregnant with Samantha. In the bowl. I also found one wooden angel wing. I’m not sure where the rest of the angel went but one wing seemed to do the trick. In the bowl. My final contribution was a wooden puzzle piece painted as a big, pink pig. Samantha is about to go on a high-fat, extremely restrictive diet which we hope will help with her seizures. Piggy belonged in the bowl too.

I was done. I set the bowl back on the table and went about getting ready for our guests. I smiled to myself as a Natalie Merchant song came on:

With love, with patience and with faith, she’ll make her way.
She’ll make her way, hey, hey, hey

“That’s you, my baby girl.” I said dancing for my daughter on the floor. She happily jabbered back.

I put Samantha down for her nap promising a wonderful evening all about her if she would just sleep for a couple hours. Amazingly, she closed her eyes and drifted off.

Flowers showed up from my brother and sister-in-law in St. Louis. I clipped off a sprig of daisies…in the bowl.

Samantha woke up on her own at precisely 4:00, when the party was going to start. She’s on so many anti-seizure meds that fully waking her up can take about an hour. Yet today she was lucid and playing in her crib; ready for her party. I put her in a blue dress with yellow daisies. I’ve been saving that dress for a year and a half; waiting for her to be big enough, waiting for that first year. The blue brought out her red hair. I placed her tiny tortoise-shell glasses on her nose and laughed to myself. She was absolutely the most precious thing on earth.

Grandparents, aunts, uncles, cousins, filed in and kissed Samantha. Wine bottles were uncorked, hummus and brie laid out on the table. The mood was festive as everyone toasted to Samantha’s health.

As the evening progressed and the dinner plates were cleared away, it was time for our blessing bowl ceremony. Samantha was still awake, babbling to her Grandma and seizure free.

I brought out my great-grandmother’s bowl and set it in front of our family and studied the faces in front of me. I thought of what a long haul it had been for everyone; the sleepless nights, the worried phone calls, the private tears cried away from the hospital, all for our daughter.

Overwhelmed with gratitude, I cleared my throat and thanked my family for being there. I reached into the bowl and pulled out my blessings for Samantha, the lily from our wedding, the rock from the garden, the baby shoe, the angel wing and the piggy puzzle piece. I also pulled out the daisy from her aunt and uncle.

The last trinket I presented was a jade necklace from Hong Kong. My sister-in-law Poling, is from China and went home for a visit in May. Her mother gave her the necklace to give to Samantha for good luck. Thirty four years ago Poling’s little brother wore the necklace for good luck, good health and safety during his babyhood. Now it was being passed down to Samantha. The span of people loving and praying for Samantha had traveled thousands of miles.

I passed the bowl onto my grandmother, Samantha’s great-grandmother. She pulled out a silver bell. The handle was carved in the shape of an angel, “because Samantha is our angel.” When my talkative Grandma gets emotional, she is a lady of little words. She passed the bowl onto one of Samantha’s Grandmas, her Nonnie.

Nonnie pulled out a perfect sand dollar she found on a California beach. “I chose a sand dollar because it comes from the ocean. The ocean is a beautiful, constant, volatile source of life. The surface can be calm or stormy but we never really see what is going on below. And there is a whole different world below. This reminds me of Samantha; we don’t really know what’s going on underneath the surface. But there is a beautiful world full of life.”

My aunt Tracy pulled out a small silver heart. “I have carried this heart with me for twenty years. It has brought me good luck all of these years. Samantha, I now hand it onto you.” Tracy had become a great friend since Samantha had been sick; visiting in the hospital, sending cards and notes of encouragement. She is a little superstitious. Tracy’s silver heart was her beating heart . It went in the bowl.

My sister-in-law Poling went next. She brought a prayer from a Buddhist temple in Hong Kong. It is a prayer for health and longevity. The Chinese characters were printed in red ink on beautiful brown parchment. Poling passed the bowl to her daughters who had made tiny paper balls while in Hong Kong. The balls also had Chinese characters printed in red ink. The girls had also knitted purple and pink bows for Samantha. I pictured them sitting at a table while on vacation in China, knitting bows and making tiny paper balls for their small cousin; presenting their craft to their mother for approval and thinking of how Samantha would like them.

The bowl was passed to my mother, Grandma Judy who had also chosen shells. The first was a brown and white spiral I had found years ago during a family vacation to Florida. The second was from Tahiti, another beautiful, smooth shell, chosen a thousand miles away years before Samantha was born. My mom and stepdad love the ocean and are avid scuba divers. “The ocean” my mom said, “is a constant source of life. It is where life began. It harbors so many mysteries that we aren’t aware of.”

My cousin and his wife presented three candles for peace, harmony and health. The bowl now smelled of sandalwood and lavender.

My dad went last. He had a small stuffed dog dressed in a karate uniform. When you pressed the dog’s stomach it yelled out “HY YA!” and other ‘karate’ sounds. My dad has had this dog for years. It was his kick butt dog. It reminded him of how Samantha fought the doctors and nurses in the hospital and how she continues to fight. HY YA!

The blessing bowl ceremony was over. The bowl felt alive in my hands; full of love, health and good thoughts.

Cupcakes were served. As I lit her single candle, I felt giddy. One year of life.

Samantha’s dad helped her blow out the candle. We fed her frosting and pieces of mushy cake which she smashed between her fingers and toes.

More wine was poured. The men smoked cigars outside. The women (except for my grandmother who stayed outside with the boys) closed the windows and complained about the smell. Samantha rolled around on the floor, too wound up to sleep.

The night came to an end and we said good bye to our families. I finally got my tired, over-stimulated daughter to sleep. My husband went to bed. I wandered through the house remembering the night. I took the lily and the daisy out of the bowl and placed them in our big family Bible to be pressed for safe keeping. The Bible was my Grandfather’s who passed away over a decade ago. Its black leather cover holds family trees, obituaries and birth announcements through generations. As I thumbed through the pages I found a red rose, perfectly pressed between the passages. I don’t know the origin but I felt compelled to put it in the bowl. It was my grandfather’s wish, his blessing for Samantha.

I continued to roam through the sleepy house and then collapsed on the couch with a glass of wine. I sighed, happy to have a quiet moment to myself and reflect on the past year. We have asked so much from our families, friends and people we don’t know. They have spent countless hours in the hospital, brought meals, coffees, contacted other family members, held and loved Samantha, prayed, sent jade pendants from Hong Kong. How do you give that back?

Gratitude, I thought. I am grateful that I could wander through the house looking for parts and pieces of our life to put in the bowl. Grateful for my daughter’s pink cheeks, for every breath she takes, for a seizure free birthday; that neither my husband nor I decided to take the Malibu to Mexico and leave this life behind. I am grateful for family and friends that could give their silver heart up for the blessing bowl.

Someday I will repay the world for their acts of kindness to our family. I will make meals for someone else. I will send their family good wishes for good health; and visit the hospital with coffee and fresh brownies. Right now I can only reflect on the joy of the night and be grateful.

The Common Denominator

2011-07-14T21:29:00.004-06:00

In the world of small talk, children are the common denominator.

Do you have kids? I have kids? Aren't kids great? Kids are great. We now have something that ties us together, we both have kids. Let's talk, talk about our kids.

I love kids. Kids are funny, they think I'm funny, they are easy to please, they can wear a princess dress and get away with it. Kids are great.

But our kids are not here.

And it tends to break my heart.

And although conversations about children are considered polite dinner conversation, broken hearts are not.

Perhaps that is why small talk now tends to make me a little nervous. I get itchy when the conversation turns to kids, afraid that I will get asked the dreaded question......

"Do you have children?"

I fashion an answer in my head......Should this person know my past? Do they deserve to know my past? What will my reply do to this light, casual, conversation?

Phhhhhffffff....

Last night I was traveling with colleagues; only one knew my situation, seven others didn't. The conversation during dinner turned....to kids.

Crap.

Suddenly, the two dads, who had been searching all night for the common denominator, found it in their children. Their faces lit up talking about soccer games, swim lessons and fireworks.

I, on the other side of the table, wished I had the Wonder-Women capability to turn invisible.

Since I cannot turn invisible, I tried a mind-meld.....I looked at them both intensely and thought...

Please stop talking about your kids.

Please don't ask me if I have kids...

It didn't work so I tried it again....

Please stop talking about your kids.......

Please don't ask me if I have kids......

In the end, I was one for one, they didn't stop talking but they never asked me....perhaps because I buried myself in my phone, trying to collect my email.

Ironically, my phone decided to run out of battery at that time. I had nothing to do but sit there and hope they didn't call on me.

Stupid phone.

And then the Creme' Brulee came.....hello dessert, nothing diverts the conversation like dessert.

I wanted my Creme' Brulee to have a hard, burnt, sugar-crusted top, kind of the way I was feeling; hard, burnt, go ahead, try and crack me.

Instead, the top was mushy and the creme was cold and funky tasting. Nothing to crack, only pudding to smush. I pushed it away and turned to another co-worker who was equally disappointed with the lack of Brulee'.

"Yuck," I said, "What happened? It tastes like Sugar Smacks," I said to my other dear-non-children-conversing-co-worker., "You know, the cereal with the frog? What was that frog's name? He had a hat."

And suddenly, the conversation about the best kids' soccer camp stopped. Everyone wanted to know the name of the Sugar Smacks Frog.

My co-worker pulled out his i-phone, "Actually, it's now Honey Smacks instead of Sugar Smacks. the frog's name is Dig'Em."

"Ah....Dig'Em!" said the man across the table. "Dig'Em was my favorite. So much better than Count Chocula."

And the conversation turned to the best kids cereal.

Lucky Charms- they are magically delicious.

Kid Conversation: 1

Generation X trivia: 1

Creme' Brulee: 0

Thank you Dig 'Em.

Courage Classic in the Paper

2011-07-10T21:51:00.002-06:00

It's been a busy week!

We even managed to get in the paper regarding our Courage Classic Team!

You can check out our story here.

If you want to look up our team, you can find us under Summits for Samantha, not Miracles for Mito, we're a little confusing :)

What I Want to Hold True

2011-07-07T21:55:00.004-06:00

I made a conscious decision to not follow the Casey Anthony trial. It upset me too much and I try to avoid things that upset me. But my work is peppered with flat screen TV's that play CNN through the day. Every time I left my cubicle to get a soda or run to a meeting, the bathroom, the copier, there was the Casey Anthony trial.

I just want to pee!

It bothered me to hear the horrible details but kind of dismissed it. I knew in my heart of hearts that she would be found guilty.....of something. Our justice system would prevail, wrong would be right, this case would be over and I could go back to watching the stock market while I got my Diet Coke.

On Tuesday I was innocently eating my turkey sandwich when I pulled up MSN and found out that Casey Anthony was found not guilty; on charges of 1st degree murder, manslaughter and child abuse.

I could not finish my lunch.

I had to talk about this.

I turned around to my fellow pod-mates and said, "Casey Anthony was found not guilty."

My entire group turned around.

"Nooooo S*&t," said my production manager.

"You have to be kidding," said another.

And we took time out of the day to talk about what just happened. I felt relieved that others felt just as violated and angry as I did.

Because there are certain truths that we want to believe no matter how often we are proven wrong; children should not die. Mother's should not go out partying when their child is missing. Parents should not be allowed to not report their child missing for 31 days.

We want to believe that we all take care of our children, otherwise we no better than those crazy fish that eat their young.

It felt good in the middle of the day, when 'work' had to be done, to express how wrong it is. We connected as a community....me and my pod mates. I felt human, emotional and empathetic and then I could back to doing important marketing 'stuff'.

A couple months ago I went out with a friend who told me how angry she was for me. "I am so mad that this happened to you!" She said through her tears. "None of this is fair. What kind of world is this?"

It felt good to have someone be mad for me.

It now feels good that people are mad for this little girl.

I read today that Florida has filed a bill that would make it a felony for a caregiver to not report a missing child after a 48 hour period. They are calling it 'Caylee's Law'.

This makes me feel better, that others are giving actions to our words and our thoughts that this is wrong. It makes me feel better that in this crazy nonsensical world we are trying to find what we can make right.

Perhaps that is what I want to hold true.

Princess

2011-06-30T08:55:00.005-06:00

Perhaps it's because Snow White was poisoned and came back to life with true love's first kiss....

Same with Sleeping Beauty and that crazy spinning wheel....

Maybe that's why we expect our Princesses to come back to life.

And wouldn't that be nice.

Maybe this whole thing upsets me because this is week when we process our own 'what could have been' and 'what should have been', the loss of our own 'happily ever after'....the week when we lost Jack.

But I find this whole Newsweek 'What Princess Diana's Life Might Look Like Now', to be quite offensive.

I first heard about this on NPR; early Monday morning while still hitting the snooze button. They were featuring an interview with the author who wrote about what Princess Diana's life would be at 50...if she were still alive. "Diana would have had botox! She would tweet! She would have had an i-phone!"

This is NPR? This is news? Who the heck cares?

And then I saw the cover of Newsweek and I was shocked. There she was; how she would have been at 50, a picture of Diana walking with Kate Middleton, smiling casually, glancing coyly at the camera, her face weathered a bit with age.....

I thought of her sons and how shocked I was by this picture

I thought about how I would feel if someone modified a photo of Samantha to show her 15 years later; graduating from high school, going to prom.

And I thought about how far the media might go to gain attention.

Because, I hate to point out the obvious, but Princess Diana is dead. She will not come back to life. She will not have botox. She will not tweet. She will not stroll casually in the street with her daughter-in-law. The story Newsweek created is a silly fairy tale and those who loved her know this, they know this everyday.

On a week when our own family remembers, we realize that part of moving on is to grieve, to remember where we were six years ago but also to be, to live, to take care of each other and to celebrate how we have progressed further.

Because in the real world, true love's kiss cannot always make things right, mice do not talk, birds' do not sew dresses and we do not always live happily ever after....no matter how badly we want to or how much we can do with Photoshop.

And really, really, really Newsweek......don't we have more important things to focus on; perhaps the living, the economy, the middle east, the environment?

If I wanted to see Elvis, I would have picked up the Enquirer.

Athena

2011-06-26T22:45:00.012-06:00

There's some stuff going on......

Saturday was our 11 month anniversary of Samantha's passing.

Tomorrow is Jack's due date.

Crap.

So on Saturday I did what any mourning Mama would do.

I did an Olympic distance triathlon. Olympic is a mile swim, a 30 mile bike and a 10k run. I have never done all of these distances at once. In fact, the last time I ran a 10k was before I was married.

But my crazy, searching-for-meaning self has found something in being sweaty, stinky, sore and having an elevated heart rate extended periods of time. It keeps me somewhat sane so I'm not questioning it...quite yet.

Signing up for this event was its own experience. I am now 40 so I qualify for the 40+ division. Also, since this is a USAT race, they divide classes by weight. If you are a woman who weighs over 150, you qualify for a different racing class.

The racing class is called Athena.

AND if you are a woman who weighs over 150 and you are 40+, you get to be in the Athena, 40+ division.

AND to track who you are during the race, they put your category on the back of your calf in black marker. I had A-40 on the back of my leg.

That's right, Athena baby.

But I did it. And although I didn't have a rockin' time, I passed many 25 year-olds on the bike. That's right, 25, you're about to be passed by an A-40. Take it.

In the A-40 division, I placed 2nd. I placed 2nd out of 5 people but hey, I'll take that ribbon.

Hubby cheered me on and even snapped a couple pictures:

I'm Athena hear me roar

On the run.....I'll be there in a little while

Still running....

Done!

Still done!

Me and my lovely friend Jill who convinced me to do this. Thank you Jill!

Pulling into the parking lot before the race, the sky was pink, Samantha pink. I asked her to watch over her crazy Mama as I try to make sense of the life we're trying to create.

She makes me want to live a better life.

Happy Father's Day Dear Hubby

2011-06-19T20:50:00.010-06:00

Father's Day......

PFFFFHHHHHHH.

Do you know that Father's Day wasn't considered a holiday until 1913? And it wasn't until 1966 that Lyndon B. Johnson officially declared Father's Day a holiday to be held on the 3rd Sunday of June.

What did we do until then?

Did our father's not feel validated? I think they probably did.

Not that I have anything against Father's Day....not really. I have a great Dad and a great Step dad and I am truly fortunate to have them in my life.

But this Dad's Day left a hole in my heart.

It is hard to find a Dad's Day card for your hubby that doesn't talk about how great he is with the kids, or how much his help is appreciated, how great he throws a ball.....yada, yada, yada.

But I did find one that talks about us, because that's where we are now....us.

So....us....I made coffee. And bought french crullers. And his favorite libation. And booked us on a trip to Costa Rica this Fall. And I followed him around all morning....are you okay? I think I'm okay. Are you okay?

And in the end, we were okay. We had a lovely Father's Day. We honored my Father. We ate steaks in the backyard, drank wine and had figs smothered with Camembert.....yum

It did not fill the void. It did not fix the fact that Hubby is really pretty great with kids and would be (is) an outstanding Dad. But we did laugh, toast and remember our Lil Miss.

And we made it through another day.

Good Things- Summits For Samantha

2011-06-12T22:06:00.005-06:00

I have been remiss in posting.

But here it is......

Our Courage Classic 2011 video....Thank you Scott for your talent and dedication to our cause!

Just Waiting

2011-06-02T16:25:00.003-06:00

I'm sitting here in Albany.

Waiting for a plane to DC.

Enjoying a glass of red, watching travelers filter in and out.

Old pictures of the Saratoga races line the walls.

I have a Caesar Salad with scallops and 4 anchovy fillets.

That's right, count 'em.

Four.

Yum.

Salty.

CNN says the market is down.

CNN says Kim Kardashian is not pregnant.

What the heck is going on in Arizona?

Waiting.

Thinking.

Am I the only person who loves anchovies?

A glass breaks.

A man talks in a loud voice.....animated into a blue tooth....shaking his hands in the air as he sits by himself.

And I wait.

For the next leg.

Purge

2011-05-31T00:18:00.003-06:00

I have talked about the clogged pore on my back and the need to have my husband pick at it.

But I won't mention it again.

It makes my friend Heidi gag.....sorry Heidi.

Every once in a while, just like my back, I need to do an emotional purge. I tend to feel a bit clogged and the crap needs to come out. It isn't pretty, in fact I can be a tad ugly.

Once, in the hospital, I kicked a chair (aimed at my husband) across the room and found myself huddled in a ball at the chapel.

Others may recall the time I left Children's and found myself in Downieville getting a $.05 cup of coffee.

On Thursday evening, I found myself in the same predicament; so full of grief and sadness and anger, I didn't know quite what to do with myself.

I howled at the moon.

I threw my car keys in the garden at 11:00 at night.

My sane self told my crazy self I might need those keys at some point.

I told my sane self to go to hell and plopped down among my new baby tomatoes to have a good, long cry.

The tough part about sitting in the new-baby-tomatoes-while-grieving-at-11:00-at-night is that I get cold. And my bum gets wet. And sooner or later I dry my eyes and think I might be a bit more comfortable inside. Darn it.

And I wonder what I did with my keys but realize I throw like the proverbial girl and find them among my baby zucchinis.

Going into the house, I don't say a word

I don't look in the mirror. I know my face is swollen and tear stained.

But cuddling up to hubby on the couch, I feel 20 pounds lighter.

"Better?" he says as I steal the comforter.

"For now," I say.

He sneaks a hand down the back of my shirt and picks at that annoying little pore. "There's nothing left," I say and sigh into his chest. "I left it all with the tomatoes."

The Celebration within Sadness

2011-05-23T21:58:00.004-06:00

Last week I spent an afternoon at Children's Hospital, helping them out with their Family Centered Care Day.

It was good.

It was sad.

It was a bittersweet reunion of a community I love so much and feel so passionate about.

I sat at the registration desk.

And a man came up with tired eyes and an orange bracelet that said he was a parent.

I greeted him with a cheery smile. "Hi! Do you mind signing in?"

"I heard I could get some food here."

"Oh yeah, go all the way to the back."

He looked at me with helpless eyes, "It looks like a carnival back there."

"Oh no." I went on, "It's about family centered care day. As a parent, you can provide some great insight as to what's working and what isn't."

The pen dropped onto the sign-in sheet....a thud onto our family centered care day.

"I just want something to eat."

I back-pedaled, "And you can get that, just go to the back. You don't have to say a word to anyone," I gave him my best smile, "I promise."

"No, thanks. I'll just go down stairs." He sighed, a sad, frustrated sigh.

And I watched tired-eyes walk down the hall. I resisted the urge to run down the hall and tackle him in a bear hug and say, I know what you're going through! You feel beaten and out of control. It will be okay! For the love of God let me make you a fruit and cheese plate!!! It is the least I can do!!!

Instead I watched him walk away. Chicken, I said to myself, You totally should have tackled him.

After Family Centered Care Day, I joined my lovely friend Maria and we hung the rest of my Ben's Bells. We stood over by the cafeteria.

"I love this place," Maria said. "When Jacob was really sick, Sarah and her Grandpa used to play hide and seek out here."

I looked up at this place. This place of hope, despair, loss, life and love, and I hung my bells.

And I cried.

And I hung my bells. My favorite is over by the mama and baby bear.

At this time, our friend Tracey showed up, saw my teared-stained face and grabbed my hand. "I love you," she said.

I could only cry.

The three of us went out to dinner. Three moms, two have lost their children, one whose child has a fatal disease.

Three daughters, two have lost their moms.

Good Lord and the crazy odds.

And we cried, we laughed, we embraced. And I felt grateful for where my life has taken me and the good friends who can talk about life and death while eating nachos.

Back in the car, I still had three bells so I drove back to University Hospital and hung them in the garden where I used to walk when Samantha was sick.

The ER at University Hospital is packed at 9:30 at night.

And I watched these people. I watched them process their pain, their new diagnosis, and as I hung these bells and I thought, I cannot turn away from someone else's pain

I will never say I cannot imagine....

I will not tell my friend who has stage 4 breast cancer, I can't imagine what it is like to loose your breasts.....

I won't tell my friend who lost her mom, I can't imagine what it is like to lose their mom.

I will not tell my friend whose son is austic that I cannot imagine what life is like when he bangs his head into the wall.

Because to say I cannot imagine is to say I will not imagine, I will not put myself in your shoes.

It is to turn away......

So I will listen.

And I will embrace.

And I will imagine.

And I have to say, there is a glorious, amazing strength, to embrace and recognize each other's pain.

And I will celebrate who you have become because of what you have endured....and maybe...just maybe make you a fruit and cheese plate

Amour

2011-05-17T22:19:00.005-06:00

Nonnie and Pops took a trip to France a couple weeks ago.

This is what they sent me:

From Notre Dame

The two candles in front are for Samantha and Jack....right by Mary holding Jesus. Pops has a way of doing these things on his own. He went and lit the candles and then told Nonnie in a quiet whisper.

"I lit candles for Jack and Samantha. They are the two in front."

Nonnie looked over at the two perfect votives, the two tiny little flames in the church and started to cry.

"I ugly cried at the Notre Dame," she told me.

As you know, I am a big fan of the ugly cry. "I can't think of a better place," I said.

"Me neither."

They told me that they lit the country with candles in honor of Jack and Samantha......Jack and Samantha candles through the French country side.

Je t'aime.

Who is in Your Neighborhood?

2011-05-15T22:26:00.004-06:00

This is me and my friend Jenny during the Ben's Bells distribution at Red Rocks. Jenny is a good hugger....look at that hug.

Ben's Bells was started by a mom in Tuscon who unexpected lost her beautiful, three year old son, Ben. The message behind the bells is about spreading kindness, the power of healing, hope and a community.

Jenny has brought Ben's Bells to Colorado and on Saturday, we distributed those bells in the community for others to find them and pass them on.

Aren't they lovely?

I was talking to a coworker on Friday about my weekend and the Ben's Bells distribtion.

"I'm going to a non-profit event founded by a mom who suddenly lost her three-year old son."

Co-worker makes a sad face.

But I continued, "my friend Jenny, whose daughter has an anoxic brain injury started the organization here in Colorado as a way to spread kindness and healing here."

Silence and nodding.....I took a long sip of my diet coke. I should talk.

"What are you doing this weekend?" I asked

"Oh, the usual, soccer game, trip to Costco."

I sometimes forget to filter the things I am used to in our lives. I can talk lovingly about my daughter, switch to seizure control and talk about marketing plans in the course of two minutes. I forget that these things might not be the norm in other people's everyday lives.

When Samantha died, my Supermom friends and I talked about the possiblity that I might have leave our cozy nest of friendship.....that it might be too painful or a reminder of our old life. But this place, this place and the tragedy we share, continue to share.....and the hope, healing and kindness.....it envelopes your heart and reminds me of what is important. It is a place where we are not sad, we just are.

And who else hugs like that?

Oh Mother....

2011-05-08T20:42:00.011-06:00

It's Mother's Day.

Happy Mother's Day.

I still have not come to peace with this holiday but I am working on it. My battle began this week with the radio. We have a local jeweler who I will call ......Shom Shane.

Shom Shane spends a lot of money on radio advertising; even more money during Mother's Day and times when I happen to be commuting back and forth to work.

I'm driving along, innocently, and I hear this, I'm Shom Shane, Mother's Day is a special time to honor that special lady.

Grrrr.

There is no greater honor than to be a Mother. That's why we have created a beautiful pendant of mother and child. The mother holding her baby close to her heart....

Usually at this time, I change the station. Except the one time when I changed to another station and the commercial was playing there too!

We carry these beautiful pendants in blue gemstones and in pink.

At this time I put in a CD of angry chick music.

Shom Shane can kiss my big toe.

Mother's Day 1.

Heather 0.

It has made me realize that Mother's Day must be hellacious for those trying to get pregnant....those who want nothing more than to have a little pumpkin....those who want nothing more to be a mom.....stupid Shom Shane and his mother and child pendants.

I pulled out of my funk on Saturday to join my friend Lindsay and her lovely dancers at Dance Fusion. They had been running a fundraiser for Miracles for Mito and presented us with a dance in honor of Samantha and a check for $218.06

The dance was to Baby You're a Firwork. The six cents was because those little dancers were digging deep into their piggy banks to give money for Miracles for Mito; even pennies count

One little girl said that Samantha could take care of her kitty, who is also in heaven.

I think Samantha would like that job.

Nothing removes a Mother's Day funk like watching 40 little girls dance in honor of your child. It made me speechless.

Which is hard to do.

The rest of Saturday was spent at the lovely Stanley Hotel, hanging with Hubby in a beautiful mountain-side suite.

Nothing removes a Mother's day funk than a Hubby who just wants you to be happy.

In the midst of me working through my own Mother's Day issues, a friend celebrated her 3 year anniversary of living with stage four breast cancer, another friend cared for her son in Children's Hospital, another admitted her son today through the ER, another celebrated her first Mother's Day without her mom.

And I thought, none of us live a Shom Shane radio commercial.

But we get through....some of us celebrate with home-made Mother's Day cards, some of us celebrate with good friends who understand. I felt honored to have a troop of fabulous dancers and a hubby who took me to the Stanley.

And I never, for one moment, felt like I was on this journey alone and for that I thank you. I was bathed in the memory of who I am because of Jack and Samantha.

I hope on this Mother's Day, no matter where you are in your journey of your life, kids, no kids, family, no family, I hope you are embraced.

If Mitochondrial Disease were Osama Bin Laden

2011-05-04T22:07:00.003-06:00

I have a fantasy…… Mitochondrial Disease is sitting in its fat compound surrounded by its minions, rare double- recessive gene and complex undiagnosed metabolic disorder, feeling protected and secure.

They are lounging in the lap of luxury, comparing notes on who has wrecked the most havoc on unsuspecting families. And then….suddenly, a group of doctors and researchers, armed with intricate genetic coding and the cure for mitochondrial disease burst through the door. Without a word, bullets of adenosine triphosphate, the source of chemical energy, spray through the air and destroy Mitochondrial Disease.

It is over. The reign of terror is done. No one will ever suffer at the hand of Mitochondrial Disease.

How would I feel?

The last couple days I have watched families who lost loved ones in 911 talk about how they feel now that Bin Laden is dead. They answer tired, un-thought questions…. Is there closure? Are they relieved? Do they feel like they can go one with their lives now? Did they dance in the street?

They look into the camera with a puzzled faces and most answer that yes, they are relieved but no, this does not give closure to their loss.

If Mitochondrial Disease were destroyed today, I would feel relief that the people I know and love who suffer from this awful diagnosis would be safe. But it would not give me closure, it would not make me dance in the street, it would not make me sing, Hey, hey, hey Goodbye.

As far as going on with our lives, I think anyone who suffers from a significant loss tries as best they can to go on with their life every single day and some days we do it better than others.

For the first time in my life, I question the theory that by taking someone or something away, it can fix what was taken away from you. I’m not sure it can.

But there is the obvious truth- Bin Laden was an evil, evil man who needed to be removed from this world. I feel better knowing he is not here. I am in awe of the people who so bravely put their own lives in danger and made this happen.

And if those smart, brave doctors came in, armed with a cure and destroyed this awful, evil disease, I would thank them and I would be in awe of their enormous brain power.

And I would secretly, selfishly wish they could also turn back time.

Over at MFM tonight

2011-05-01T22:46:00.003-06:00

Tonight you can find me over at Miracles for Mito, talking about our Canvas and Cocktails night! Click on the 'about us' link and that will take you to the blog.

Check out my Picasso.

Happy Sunday :)

There's a Fire Starting in My Heart

2011-04-24T21:44:00.005-06:00

This is not an Easter post.

Or maybe it is. It is about moving on, finding strength to grow from ashes, life after death.

I guess it might be an Easter post.

I have found solace in a couple things; exercise and angry Chick music.

Combine them and I am indestructible.

Yesterday my long ride was thwarted by a snow storm. I was antsy after after a topsy-turvey week at work, Jacob's heart diagnosis, and constant reminders of Samantha.

On Saturday morning, I followed my husband around.

"It's snowing, should I still go for a ride?"

"Well, it's snowing," said hubby.

"Maybe I'll go to the gym, should I go to the gym? " I debated back and forth.

"Go!" He said, "Get some of this angst out of you."

"Am I full of angst?"

"Go"

So I found myself at the gym, at the spin room, by myself in the spin room, a room full of mirrors.

And I plugged in Pandora, an on-line app that plays your favorite songs and then plays other songs that sound similar to your favorite songs.

My Pandora radio station is a plethora of angry-girl music. I love it.

I found myself a sweaty, spin-cycle mess. I burned 1,200 calories in an hour and a half. I was en fuego.

At one time one of favorite songs came on.... Adele... Rolling in the Deep.

There's a fire starting in my heart,
Reaching a fever pitch and it's bringing me out the dark
Finally, I can see you crystal clear.
Go ahead and sell me out and-a I'll lay your ship bare.
See how I leave, with every piece of you
Don't underestimate the things that I will do.
There's a fire starting in my heart,
Reaching a fever pitch and it's bringing me out the dark
The scars of your love, remind me of us.
They keep me thinking that we almost had it all
The scars of your love, they leave me breathless
I can't help feeling...
We could have had it all..Rolling in the Deep
You had my heart inside... of your hand
And you played it...To the beat

It is a fabulous warrior-goddess song about a bad break-up. Not quite what we have gone through but it hits the inner-pissed-off-Mama-Goddess inside of me.

So I rode. I turned the cycle knob to it's hardest setting.

I raised up out of my seat and chanted the lyrics

Don't underestimate the things that I will do....

I wiped the sweat off my brow

The scars of your love, remind me of us.

Someone came into the spin room, looked at my crazy self and left.

There's a fire starting in my heart.
Reaching a fever and bringing me out of the dark

I could have had it all. What does it mean to have it all? Did I, at one time have it all? Did I play it? To the deep?

I turn the dial one more time.

I think I might throw up....but it's a good throw up.

Is there a good throw up?

I can't see through the sweat on my brow.

But I feel my heart. It beats like a crazy drummer. I feel it through my chest and I feel alive. Good heart.

I returned home and fell asleep on the couch at 9:00.

Snooze well warrior princess, sometimes those inner demons are the hardest to battle

Today's post is not mine

2011-04-17T20:18:00.003-06:00

Today's post does not come from me.

It's comes from one of Samantha's dearest advocates....Sweet Caroline. Caroline is seven (gosh, I think seven, I should know this). Caroline is big sister to Max.

Max and Samantha bonded in pre-school.

As a result, Caroline and Samantha became close.

To make things even more fun, I adore Caroline and Max's mom, Rebecca.

I miss seeing them at preschool drop-off.

Come to think of it, I miss preschool drop off.

But here is my post, from Mom Rebecca and Caroline. Rebecca was telling me about show and tell and Caroline's class, 'Me' is Rebecca. 'C' is Caroline. Baby Samantha is one of Samantha's baby dolls I gave to Caroline. Caroline named the doll Samantha and takes very, very good care of her.

me: how was show and tell today?

C: great I brought Baby Samantha!

me: what did you tell them about her?

C: I told them the story of the real Samantha, that she got sick near her birthday and she died while we were traveling and how I came up stairs and saw you crying.

me: oh.. you told them I cried?

C: Yes, you cried a lot, but I didn't tell them how much I cried, is that ok?

me: totally ok.

C: I told them about Miss Heather and how she gave me Baby Samantha and how I kept the lady bug mirror I was going to give Samantha and how I think about her.

me: ah, very good things to share.

C: Let's go outside and take Baby Sam for a walk

I wrote to Rebecca, saying that it had been a tough week at work. And that as always, Samantha stories touch the deepest, most secretly kept corridors of my heart.

Here was Rebecca's response

I am glad I could make you smile! I loved talking with Caroline today and was pretty surprised by what she said. I was totally expecting her to tell me that she showed the class how the baby doll cried and how it came with accessories. I had no idea she was going to go into all that detail. I am not sure if I have told you, but the doll is really a baby Sam to her. She sits in the doll wheel chair and she uses a special doll walker for her too.

It is her way to connect with Samantha's memory, a way for her to still play with Samantha. It was very important to her that she brought the doll into Max's/Samantha's classroom today.

I have noticed if she is having a down day that is the first doll she goes to. It seems like a long year doesn't it? I feel like I have known you forever, but it really was just about this time last year that we really began to get to know each other. I remember how sick Samantha was in April. It was the same time as Max's MRI and Spinal and when we found out about the Glut 1. I feel like five years have gone by since we got that diagnosis.

Out of the mouths of babes, seriously. I thank God for these sweet stories and these sweet little people who tell it like it is.

Thank you Caroline.

It's April

2011-04-13T21:26:00.002-06:00

Ah April.

Last year at this time we were in the hospital with Samantha. She had gone off the ketogenic diet because her little pancreas couldn't handle the fat. It was the first domino in a line of dominoes....one thing after another.

I remember watching her levels rise thinking, how much more can one little body take.

So as another April comes around, I find myself thinking of this time, reflecting on what started a year ago.

I went to hot yoga this evening. I was stiff. My body felt rickety and unbalanced; a bit like my brain. But I did the poses as rivers (seriously rivers) of sweat poured off me.

An hour and a half later, I gratefully left the room feeling cleansed, stinky and as flexible as a slinky.

I couldn't bear to put my boots back on so I walked into the parking lot barefoot. It was raining and the cool, wet asphalt felt like heaven on my post-hot-yoga tooties. The air smelled of wet earth, beckoning the tulips and pansies to bloom.

On the drive home, I turned the radio off so I could hear the rain falling against the car. I went from rickety and unbalanced to quiet and introspective.

Hello April.

Until the Cows Come Home

2011-04-10T21:13:00.006-06:00

We spent this weekend with friends up in the mountains. It's a good way to spend the weekend.

The last time we spent the weekend together was last winter with Samantha in tow.

Saturday evening the 'older' girls sat in the hot tub drinking wine and watching the sun set over the mountains.

And Samantha came up in the conversation, like she usually does.

"I felt like something has been missing this weekend," my friend Jill said. "She should be here with us. Bart should be making her do tummy time and she should be protesting. She should be here, wiggling on the floor."

I smiled. I, like every Mom love talking about my children. I think about her every hour but I love it when someone else thinks about her too. I love it when someone tells me they miss her. It reminds me of what a tiny, force of nature she was.

I looked into the bright, pink sky and smiled at the presence of her that I felt. Even the air smelled like Samantha.

And the the four 'little' girls came running out into the hot tub and it was an entirely different conversation...talks about the Little Mermaid, baby sharks and stinky feet.

We soaked until our hands pruned and soaked some more.

I will love Samantha stories forever, until the cows come home, and they leave and then they come home again.

Kindness....when no one is watching

2011-04-03T21:25:00.005-06:00

This week I am a guest blogger for my friend Jenny. She is starting Ben's Bells in Denver. Check them out! Because kindness counts, especially when you don't know how much it counts.

We have been the recipients of many, many acts of kindness. As soon as we became a family with a medically fragile child, the kindness came pouring in....meals, notes, prayers, thoughts, the world was with us.

And when we lost Samantha, the world mourned with us.

Today, many continue to help us and we are still overwhelmed by the kindness and generosity of humankind.

But sometimes the little things make an impact.

I have immersed myself back into the corporate world. Not knowing quite what do to with myself and not wanting to be at home, I am back into a high-pressure, travel filled job. It is quite a change.

And I search for specks of kindness in the world of business travelers.

A couple weeks a ago, I was scheduled to fly to Albany via Chicago and I was late.

I was late to leave the office, the highway was peppered with speed traps and the only place to park was 3 bizillion miles away from the airport and I was wearing 4-inch heels.

I cursed my luck and ran (as best I could) to the airport.

I got stuck in security behind a group of 50 students on a Spring Break trip.

I pleaded my case to an unhelpful TSA agent.

I cursed the clock.

Was it arms and legs? No.

Was it life and death? No. But it was still stressful.

I had 30 minutes to make my flight.

I was taken aside for random screening.

I bit my lip.

When I ran down to catch my train, the doors closed before I could get on.

I cursed my luck.

But then the doors opened and I got on the train. And the doors closed.....

And they opened again.... And closed again....

The train was stuck. I would miss my plane.

And I hummed my mantra "It is not life and death...it is only a plane. It is only a plane."

The man standing next to me said, "the airport is in slow motion today isn't it?"

"Oh my goodness!!!" I said and unloaded my story. "I am so afraid I will miss my flight to Chicago."

"Ah, Chicago. That's where I'm going. We'll miss it together."

As the train moved forward, my luck started to change, I might just make this flight. Me and my new friend ran for the plane where we were the last two to board.

He went onto first class and I went onto battle the gate agents as to why I shouldn't have to check my small, quite compact bag to Albany.

As my new friend left to first class, I said sarcastically, "think of us poor schmucks in 28C."

I took my 'check baggage' tag and headed down towards the airplane. I had made it. But my hair was plastered to my head in sweat, my feet hurt and I questioned the ability to do the smallest of tasks....like catch a plane.

As I went to hand my bag to the gate agent, the flight attendant poked her head out of the plane, "Ma'am? I think we can fit that in first class."

Oh thank goodness. I stowed my bag and passed my manager...who was also in first class....humph.

"I barely made this flight." I said, pushed my sweat-coated bangs out of my eyes and made it back to 28C....right next to the lavatory.

Lovely.

But I had made it.

30 minutes into the flight my manager came back to the hovel of 28C. "You haven't eaten have you?"

Food? Oh yeah. It was 2:00 and I hadn't eaten all day. "I think I forgot." I said.

"I'm not going to eat my lunch, would you like it?"

I nodded and my stomach grumbled.

So five minutes later, a disgruntled flight attendant came back to 28C with a full first-class chicken salad, complete with a cloth napkin and real silver ware. I munched on Italian bread sticks with vigor.

A couple minutes later, an even more disgruntled flight attendant came back with a glass of Chardonnay. Apparently, the new friend who I met on the train felt sorry for me and asked to have a glass of wine be brought back to 28C.

Contentment was a meal next to the lavatory.

And that's kindness is isn't it?

It's easy to be kind when we know our neighbor is in crisis. But what about when we don't know? Who is our neighbor on the flight to Chicago? Are they going to a funeral? To visit a sick friend? Are they a business person trying to put her life together after the death of her child? Or are they just trying to get to Chicago?

Doesn't matter.... Kindness counts.

Calling

2011-03-31T21:28:00.005-06:00

I am living two lives.

One life gets on a plane, attends conference calls and develops marketing plans.

The other life is focused on our foundation, the world we once lived with Samantha and carrying on the important work she left me to do.

It's a lot of balls in the air but I am grateful for them in their own way. Work keeps me busy, the foundation gives it all purpose. At least today.

Tuesday after work, I got everything ready for our Wednesday support group meeting. We were having a supply swap which meant going through Samantha's medical equipment.

We have a lot of it.....

Still....

I pulled out her feeding buttons and thought,

Maybe I should save one just in case.

This made me smirk a little and think for what? It's those tiny moments that solidify what world we are now in....a world without feeding buttons...and sometimes I feel sad about that.

I went upstairs with a box full of medical supplies and told my husband about my odd desire to keep a button 'just in case'.

His response was, "Well, I would hope we won't ever need it!"....which made me smile....hubby...keepin' it real.

So buttons and syringes were packed in the back of the station wagon and given to another family who could use them....and then I answered a conference call.

What would I Tell her?

2011-03-28T21:17:00.010-06:00

I had my next blog post all written out. But I hit a detour. By this.....

My friend Heather posted these pictures along with the caption "favorite picture of my friend...bachlorette party."

First of all....rule of the bachlorette party....new moms are the worst! I remember going out on this night, telling my husband, "Oh everyone is a new mom. They will be tired. I'll be home by 10."

HOOEY! ....new moms can party like they have never given birth. I don't know what it is, but they can ralllllly......this was a wonderful, fabulous, unforgettable night.

10:00....yeah right.

What is up with those nails?

Tonight I thought about this woman and I thought, what would I tell her?

Nothing... Except that she is strong and beautiful. And to wear that tiara with pride, never bustle that train, to love this time and to dance like she was a diva-disco, sparkly, party ball.

Because perhaps she is.

It would do no good to say that life is hard and never what you expect and blah, blah, blah..... We all believe we are different. And we will beat the odds.....

even odds that we didn't know we had to beat.

And we SHOULD believe this....with all of our hearts. Because if we don't, we would never move forward.

We would never know how strong we are when faced with the unimaginable, incomprehensible and the tragically sad.

But we DO move forward, stronger than we ever thought we could be. And no one could tell you that.

And even if someone did tell us the odds, the unexpected, the unknown or sad, we wouldn't listen.

Nor should we.

I found my undies

2011-03-21T21:55:00.003-06:00

Hubby was gone for over two weeks.

The house was oddly quiet without him. It felt cold and I felt lonely....so I decided not to be at home at all.

For two weeks.

I would come home at night to sleep in my own bed but would be out of the house at 7:30 and not return until after 9 at night.

Don't get me wrong, I had a great time and reconnected with my inner social animal during my two week-only-to-be-at-home-to-sleep-extravaganza.

My inner social animal is quite busy.

You know you've connected with your beastie when it's 8:30 on a Sunday night, you're sober and singing Copacabana at a local bar in Loveland. To my credit it was karaoke and my friends make fabulous back-up singers....nevertheless....her name was Lola, she was a showgirl

I also noticed my underwear drawer was dwindling, so much so I thought it might be time to hit the jockey store.

But the dwindle was so dramatic, I started to worry....what has happened to my delicates???

Perhaps the dust bunnies high jacked them.

Hubby came home last night so I spent yesterday getting my life back in order; washing the two-week old pasta off a forgotten plate, watering my neglected Lilly, shooing dust bunnies out the door and doing loads, loads and more loads of laundry.

I connected back with my domestic self and find her quite handy. Amazingly, she is the finder of lost undies....they don't just disappear, they just end up at the bottom of the hamper.

Ah yes.... the hamper.

Welcome home Sugarpop....I can't find my underwear without you.

Maria's post about our book signing

2011-03-20T10:07:00.005-06:00

Today's post is by our lovely Maria, Vice President for Miracles for Mito and Jacob's mom. It's about our book signing!

You can find it here.

AND if you would like a book but couldn't make the signing, please contact me or click on the PayPal button to the right. All proceeds go to Miracles for Mito.

Next event!

2011-03-15T21:35:00.006-06:00

Our Canvas and Cocktails event is featured on the website of The Children's Hospital!

Come join us on April 4th and paint this....

It's called Mother's Love and I do love it.

The proceeds will go to the Special Care Clinic and the Mitochondrial Clinic at The Children's Hospital; those places who helped us and Samantha.

Tonight I attended the kick-off for the Courage Classic. We are riding again as Summits for Samantha. I felt proud to be there, representing our team, talking about the jersey we want to design; how we want to decorate our bikes in pink and green.....I felt like she was right there.

Over a year ago I called Samantha an 'Infectious Little Miss', I had no idea how Samantha, by just being who she was, has changed how I go about my life.

Tonight I also met the PR person who worked with us during last year's Courage Classic. We had talked many times but never met until this evening.

We hugged.

"Your story," she said, "just effected me. I have never been in that situation, never met you, but I couldn't stop thinking about Samantha and how you all are doing. I'm glad you're still here."

I looked around at the room, the bikes, took in the energy, the good work we can do for the hospital.....and felt glad that I was there too.

Reminders

2011-03-14T06:05:00.002-06:00

I was skiing with friends this Saturday. In between our shushing down the mountain, we sat on the lift and talked about everything...life, death, schools, family relationships and bodily functions.

It was a good day.

My friend Heather recently had to put her black lab down. Gretchen had been part of her life for a very long time. As we stood in the lift line, we watched a couple playing with a chocolate lab and an adorable lab puppy. They were playing with a stick....it was a perfect puppy moment.

"Ugh," said Heather, "I really want to dislike anyone who has a lab right now."

"I know," I said and then it just popped out...."I really want to dislike anyone....."

And then I stopped myself short....

But my friend Ginger finished my thought, "Anyone who has a child?"

I started to laugh, realizing my brutal honesty, "Yeah, sometimes."

Ginger and Heather both have young kids. In fact many of my friends have young kids. It would be incomprehensible, lonely and unfair to dislike anyone who has children.

But it felt kind of good to say it.

And it felt even better to have my friends laugh along with me.

We saw Grief standing in the singles line, waiting for us to move over but there was no room; only room for my friends, brutal honesty and the occasional conversation over bodily functions.

Stinky

2011-03-09T22:12:00.002-07:00

I have a trainer.

And now a schedule, which I have committed to adhere to.

Somewhat.

My trainer is a GREAT friend who knows me and has incorporated yoga into my schedule.

Thank you Tracey.

So today, I felt inspired; in spite of a bout with stomach flu and bit of a nutty week...I found myself at Bikram Yoga.

Bikram is another word for really hot, sweaty, humid yoga. It requires that the room be 105 degrees and 40% humidity.

Hot, sweaty, jungle yoga.

I prefer to call it stinky yoga because that's what I am. At one point, in the middle of the class, I thought What is that smell???

I realized it was me.

Ewww.

We did a pose that I thought would be simple. It's kind of an on-your-knees back bend. As I tilted back, I realized I was nauseous, super dizzy and needed to lie down on the mat.

What's up with that

I laid down and heard the instructor explain my nauseous pose.

"This pose incorporates your hips. Your hips hold a lot of emotion and stress. It is not uncommon to feel sick or dizzy in this pose if you have a lot going on in your life. Just be patient, it takes a while to work these things out."

Well then.

It was a good class, a stinky class and apparently I need to do something about my hips and a back bend. I guess my body is holding a lot of emotion.

Go figure.

All in good time...according to my yoga instructor, it takes a while to work these things out.

Peppered

2011-03-08T21:08:00.002-07:00

In my old and wise age, I have learned that life is peppered.....

with the good and bad....

The incomprehensible wrapped up in solace, the cloud with the silver lining, kind of like a pigs-in-a-blanket, dipped in sweet and sour mustard, it is untimed, it is what we do not expect, the happy can make us sad, the sad can make us realize how much more we have.

Last week I attended my first funeral since Samantha. My Grandma Bishop was 94 years old and passed away a week after being diagnosed with terminal cancer.

She lived a good life and was ready. She even made brownies beforehand for those who came to visit her during her last hours.

How's that for peppered?

I took a train from NYC to Washington to attend the service. I was nervous. I know death all too well and was not sure how my response would be.

But I sat next to my cousin Meredith and her lovely baby daughter Tristan. I held Tristan in my lap as she vigorously munched on my bracelet and screeched out in delight when the organ played.

Her head smelled like baby shampoo.

Sweet little head.

And there were times when I cried and there were times when I laughed to myself as I watched Tristan chomp on the church pew.

It's a crazy cycle; a cycle that moves forward, propels us forward, ready or not. It's not always good, not always bad. It's holding a baby while listening to a funeral service and the sweet scent of baby shampoo that makes it all a little more bearable.

Life is Like....

2011-02-28T22:02:00.002-07:00

Adios dear February. I bid you adieu....

Happily.

One of my Valentine's treats is the big box of chocolates. I hate to admit it but I love them...the sugary cherry fluff wrapped around dark chocolate, the decadence of having just one more peice....oh.....yum...

and every once in while you get that one bonbon, that one nasty little tidbit that makes you say,

"what the???"

Why does every box of chocolate have to contain the nasty chocolate? Is it a prerequisite?

Just because it is covered in chocolate does not make it better.

But then you get a Carmel and it's all okay.

Hence my February....a combination of the good and the bitter.

We have lost two Grandmas this February.

Two

I know, it is a wonderful thing that I am 40 and have so many Grandparents but it breaks my heart and I still miss them.

We had a wonderful fundraiser and raised $1,300 for Miracles for Mito!

My grandfather is in the hospital and unresponsive.

Hubby and I went to Hawaii!

And we kicked off a wonderful website.

Two dear friends had to put two dear puppies down this month

It is a lot of emotion, a lot of yummy bonbons surrounded by the stealth, chocolate covered poopie bonbons.

I do not like the poopie bonbons.

I could have left the month happy with the combination of the positive and the negative. Taking the good with the bad. I would be okay

But tonight my friend Amanda posted that her close friend had to say goodbye to her son, baby Braxton, her tiny 24 weeker who had endured 8 surgeries in his short life. I think he was born right around the time we lost Samantha. He fought on for quite a while. I never met Baby Braxton but Amanda and I cheered him on while sitting at the Breckenridge Brewery contemplating this crazy, crazy life.

My heart aches for this family and wonders if the ache ever gets better.

So, for February, poopie bonbons one.....dark chocolate covered Carmel's zero.

Damn.

May we find the sweet in March.

So Much to Say...

2011-02-27T21:19:00.003-07:00

We have had a bittersweet weekend leaving so much for me to process....all of which I will process with you when I am not quite so tired.

In the meantime, check out our brand new website....http://www.miraclesformito.com

sigh....

love...

love, love, love. Thank you to Luke and Joakim for developing my most-favorite cyber space ever.

To my Trainer

2011-02-23T22:12:00.007-07:00

A couple months ago, my cocky self signed up for a bike ride called the Triple Bypass- it's 120 miles over 3 mountain passes. It is a tough, tough ride. But my cocky self felt confident, I made it into the lottery and paid my $120.

I DO get a bike jersey out of the deal, so I got that going for me.

My lovely trainer-friend Tracey approached my cocky-self. "Have you started training?"

"Training? It's February...the race is in July!"

Training....ha!

"Oh she'll be fine," my husband said. "Heather is a Hoss."

Hoss I've been called a Hoss once before, a group of 7 men and yours truly were lost in Crested Butte on a mountain bike trail for 8 hours. When we got back to camp, hungry and in the dark, a friend of mine said, "Heather did great, she's a Hoss."

I guess Hoss is boy speak for something complimentary.

I think the verdict is still out.

Hoss....I think I would rather be called something pretty, like a princess, or fairy-queen or ruler of all that is pink. That sounds better than Hoss.

Never-the-less my Hoss status did not convince Tracey that I could get my hiney over three passes. Tracey trains people to complete Iron-man triathlons....complete 2 miles of swimming, one marathon and 120 miles of biking....one might call this a long day. She is quite good and the people she trains do finish what they started. So I listened.

"I am going to write up a training schedule for you. Will you follow it?"

"Of course, I will follow it." I said, holding a glass of wine in one hand and a cheesy poof in the other. I didn't have the heart to tell her I am a trainer's nightmare. I under-train and over-estimate my physical capabilities. I once trained for a marathon while still hangin' at the bars as a social-smoker. It was quite an achievement.

But those days are over. I am 40 after all and it's time to take my aging body seriously...and I would hate let dear Tracey down.

So on Monday I went out for my first ride and was surprised to find it a little bittersweet. Two years ago, riding my bike became a solace, an escape for an hour or two from being Samantha's mom. I now fondly recall those times, pulling my bike out, knowing that Samantha was in the care of her nurse or her Grandma's and riding for a coveted hour or two...with the cell phone close at hand.

As I rode towards snow-capped mountains, I recalled the jersey I was given last year....Green Eggs and Ham...I am Sam....

And I started to chat...

I am Sam
I am Sam

Would you, could you in a box?
Would you, could you, with a fox?

I pedaled towards the mountains....

I am Sam
Sam I am

Would you, could you with a mouse?
Would you, could you in a house?

My heart rate increased...

Sam I am,
I am Sam

I will not eat green eggs and ham
I will not eat them Sam-I-am

I am Sam
I am Sam

And I got through my first ride; 25 miles and all. On my way home I stopped to watch a herd of elk and ate some gummy bears because a ride is not a ride without gummy bears.

Thank you Sam-I-am and Trainer Tracey. I might just get my a** over that pass :)

2011-02-21T22:25:00.003-07:00

Here is my latest moon-lighting assignment!

All of us search for and desire a sense of community. In this day of Facebook, Twitter, texts and instant messaging, we are connected to the world in a way we have never been before. But do those connections bring us together in a truly meaningful way? Can we know what our friends and family really think and feel through a 100-character text? Can our younger generation develop supportive friendships through a Facebook post?

The Journey Conference for Young Women in Fort Collins gives all women, young and old, a sense of true community, a chance to connect with each other and to learn and mentor. For one day in April, women in Fort Collins convene with our future female leaders, girls in 10th- to 12th-grade, to talk about what is important, impactful and possibly life-changing.

The mission of the Journey Conference is “to mentor, motivate, and inspire young women in Poudre School District through a dynamic and meaningful intergenerational conference experience that empowers them to change their world.” This year’s conference will be held April 26 at the Marriott Hotel in Fort Collins.

“It is difficult for young women to have all of the healthy connections and support they need,” says Kori Wilford, co-chairperson of the Journey Conference. “If you don’t feel like you can reach out to your support group, it’s easy to get a false sense of who you are and your place in this world.”

The conference is a chance for young women to find their place. Panels include women from different countries, financial situations and backgrounds to give young women many different points of view.

The keynote speaker for the 2011 Journey Conference is Ashley Shuyler, founder of AfricAid, a nonprofit organization that supports girls’ education in Africa. The goal of AfricAid is to provide young women with the opportunity to transform their own lives and the futures of their communities through education.

When Shuyler was 11, she traveled to Tanzania with her family. She was struck by the poverty in the area – especially among children her own age – and became determined to do something about it. In 2001, she formed AfricAid.

Shuyler was only 16 years old when she developed this non-profit.

In 10 years, AfricAid has raised almost a million dollars and supported over 40,000 Tanzanian students. The results are dramatic: In Tanzania, 95 percent of girls don’t finish a high school education. Yet when girls are educated, they are three times less likely to develop AIDS. Girls who attend school marry later and have fewer, healthier children, and their children have a 40 percent better chance of living to age five. Girls tend to stay within the community, reinforcing what they have learned within their own village.

Ashley’s success story tells young women that you don’t need a lot of money to make a difference in this world. You can be a 16-year-old girl with a dream to make an impact.
Fort Collins is not Tanzania. But even in the U.S., we can do a better job of raising young women to be strong, empowered leaders. The United States has a teen pregnancy rate that is significantly higher than other industrialized countries. The high school dropout rate in the U.S. is 10 percent. On average, we spend only 40 minutes a week having a meaningful conversation with our children.

Every day demands do not always allow for us to mentor and connect with our teenagers the way we feel we should. It does, after all, take a village to raise a child, and the Journey Conference provides that village for a day.

Previous participants of the Journey Conference are encouraged to sit on the planning committee for the next year, to provide insight on what is important and what young women can benefit from most.

Session topics include “Health – For Girls Only!,” which gives girls an opportunity to ask important questions about their own bodies, birth control and how to stay healthy – questions they might be embarrassed to ask anyone else.

“Queen Bees and Mean Girls” was a popular session last year focusing on the dark side of female friendship and rivalry, when competition among friends is healthy, and when it isn’t and how to cultivate healthy female relationships. One attendee commented on the Mean Girls session, “Mainly the positive attitude the presenter had struck me. I would really like to be as positive as she is. I have not been hurt like she was, but I’m kind of a floater and don’t quite fit in.”

Another session focuses on the important topic of gender issues and sexuality, offering an open and supportive discussion on human sexuality and gender identity. One young woman commented, “I learned that it’s okay to be different.”

It’s not all so serious. Women learn Zumba dance, yoga and jewelry making, and the ever-popular, “It’s Your Body, Decorate It (or Not!),” features Ryan Corley talking about ownership and respect of your own body, safe piercing and tattooing protocol, and the all important lesson to never, ever tattoo someone else’s name on your body, no matter how much you like them.

The Journey Conference will celebrate its 13th year in 2011. It is free of charge to conference attendees. A majority of funding comes from personal donations within the community.
“We are so proud that we can hold this conference without big, corporate sponsorship,” says Wilford. “We never want the girls to feel like we are trying to sell them something or endorse a product. This is a very grassroots organization.”

The Journey Conference relys on the efforts of volunteers who plan the entire event. “It is a committed group of busy women,” says Wilford. “We are professionals, we are moms, we are balancing home and work, but we all believe strongly in this cause. Everyone pitches in and every year we have a great conference.”

Speakers also volunteer their time to be at the event. “It is so exciting to see the professional women of this area want to come for the day and present at the Journey Conference,” says Wilford. “I think it enforces to the girls how important they are. The conference provides a diverse professional group that all young women can relate to, encouraging them to be exactly who they are.”

Journey Conference will be holding a fundraiser at Bas Bleu Theatre on March 1, where they will be screening the film Iron Jawed Angels to honor National Women’s History Month. “We’re encouraging women – girls and mothers and grandmothers – to help us all remember the work our foremothers did to ensure our right to vote, to raise awareness, and to hopefully raise some funds for the conference,” says Wilford. Additional details will be up soon on the Journey website, http://www.fortcollinsjourneyconference.org/.

Heather Schichtel is a freelance writer and marketing professional living in Loveland. You can find her at her daily blog: http://www.samsmom-heathers.blogspot.com/

A forward post

2011-02-16T22:14:00.003-07:00

This is not from me...it's from my friend Deana- Max's Mom. It left me ugly crying on a Delta flight from Atlanta this evening.

So I thought I would share.

Thank you Deana for putting into words this amazing relationship we have with this amazing place.

A time to give...

It's that time of year again. The Alice 105.9 Alice's 36 Hours for Kids to raise money and awareness for The Children's Hospital here in Aurora, CO. Although I'm not listening to the radio all day at work, or in the car, I have followed this for a few years now, as they do so much to raise money for Children's Hospital.

The stories are heart-warming, and full of kids who have needed this amazing hospital for some part of their lives, and many have gotten better because of the top-notch care they've received. These are worthy stories, beautiful stories of miracles. But, they aren't the only stories. There are so many other stories that don't make it on air. The stories like ours...maybe the stories of the kiddos that don't ever get better. They are the stories that are hard to hear. We want to hear about the miracles. We want to hear about how this top rated hospital can time and time again "Make It All Better". But we are the stories that should also be heard.

Ours are the children who make it into the hospital for a small stomach bug, and leave three weeks later, having spent Christmas on the Eighth Floor, an emergency surgery, with a price tag of twice our yearly income going back to the place that once again saved our son's life. Ours are the ones who have been handed over into the hands of surgeons to stop the 200 plus seizures a day, coming back a new baby with part of his brain missing, but also hundreds of seizures missing too. Ours are the ones who have seen nearly every specialist department in the hospital, bypassing only the general pediatric team. Ours are the ones that have been in so much, we have favorite nurses, favorite rooms, favorite floors.

Ours are the children who died, and were brought back to life, but are never ever the same. Ours are the children who have the disease that will one day take their lives. Ours are the children who are mysteries to the doctors, who are still hoping for a diagnosis. Ours are the children who may look perfectly fine, but take a team of doctors with intensive care to help them do the things so many take for granted. Ours are the children who have left us, after the world renowned doctors just could do no more.

Ours are the children who make up the Children's Hospital. The ones who will go to be treated time and time again for the remainder of their short lives. The ones who are here today because we are fortunate enough to have a thriving Children's Hospital in our backyard. The ones who are no longer with us, but whose legacy lives on through foundations giving funds back to Children's for research to find a cure of the disease that couldn't be stopped.

So, when you listen, give...give generously. They do amazing things for all kids. The ones who get better, and the ones whose lives depend completely on places like The Children's Hospital for them to get come home one more time.

Happy Valentine's Day

2011-02-14T21:31:00.002-07:00

Statistics say.....

That if you lose a child, your chances for divorce are 90%.

90%

What a crap-tastic statistic! And you know what its says?

"You have just lost a child, but be careful, you only have a 1 in 10 chance of your marriage surviving. You have lost a child, and you just might loose your family too."

Rubbish, I say!

Rubbish.

No one knows your grief for your child like your spouse. No one else knows 'that look' when a child cries in a restaurant. No one else knows how to dry your tears.

No one else knows when you need someone to hold your hand.

No one else will forever cherish that memory.

So, this Valentine's Day is to my husband.....who is now sleeping on the couch after a dinner of steak and lobster.

No one else knows how to love my children.

No one else knows how to love that memory.....and to love me.

And for all of that, I am eternally grateful.

90% is a bunch of hooey.

Thank goodness.

Chicken Soup Trifecta

2011-02-09T21:49:00.007-07:00

Here is my latest story!

Page 197 :)

This book hits me close to my heart. The Uninvited Guest was written on a fluke when Samantha was still alive. I wrote it about the Grief parents of terminally ill children live with every day....the Grief about having a child who will not walk, not talk, a child who has seizures, a child who will never live independently. I wrote it about the Grief that seems to accompany everyday life and how to live with that Grief....how to co-exist with Grief and still have a fulfilling life.

When the call for stories was posted I thought this story wouldn't fit, we have Samantha. This book is about those who have lost a loved one. We still have our sweet, little loved one.

But it was still about Grief....so with a little encouragement from my writers group, I sent it in.

And I never heard anything back.

A week after Samantha passed away, I got a letter of acceptance stating they would like to publish my essay.

I think about this story often and how I told myself I can live with Grief and still have a fulfilling life with this uninvited guest.

Perhaps I need to see it in print.

P.S- We are having a book signing party and kick off for our foundation. You can find details here- please let me know if you would like to attend

Aloha!

2011-02-07T18:05:00.002-07:00

I haven't posted.

Because hubby and I have been here:

We took off for a week....just the two of us and sat on a beach for a while.

It was lovely and much needed. We took a vacation five years ago when I was 9 weeks pregnant with Samantha and a nervous wreck. I was afraid to go into the ocean because I thought I would be eaten by a shark.....seriously, a shark. I attribute it to a high-risk pregnancy after Jack but it still didn't make me any fun.

I was kind of fun on this vacation. We both were kind of fun on this vacation. That's not to say it wasn't without our sad times. The irony that we can now do the things we couldn't because we don't have Samantha kicks me between the eyes sometimes...

but I think it always will.

I also think it's nicer to be kicked with irony when you're holding a mai tai in 80 degree weather while sitting on the beach. Location is everything.

We also lost our dear Dodie while we were gone. It was expected but still sad. She past away when hubby and I were on a sunset cruise.

Irony.

We were also being piled with this crazy, yummy 'adult-Hawaiian-punch' while on the sunset cruise, which Dodie would have appreciated. She always liked a good party.

Most important we connected with who we are; as a couple and as two people trying to navigate this life. We held hands, we laughed, we cried, we sat in this amazing adult-only infinity pool and bobbed around on these giant, floaty, bean-bag things.

I took a surfing lesson.

I swam with a turtle.

I saw one butterfly; only one.

It was a good vacation.

The Ways to Say Goodbye

2011-01-27T21:44:00.008-07:00

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.

Thank you....

2011-01-24T19:43:00.004-07:00

We raised $900.00 for Miracles for Mito at the 40th disco extravaganza.

$900.00

In one night

Cause our people rock.

At the end of the night the bartender took all of her cash tips and poured them into the Miracles for Mito box.

How amazing is that?

Sometimes this Cause feels very selfish because I get to constantly bathe in the goodness that you people are.

So I'm bathing.

My toes are all pruny

But I smell good.....fresh and clean and full of hope.

Thank you .

The Turning

2011-01-18T21:40:00.003-07:00

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.

Unveiling.....

2011-01-11T21:14:00.003-07:00

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.

Moonlighting

2011-01-09T20:35:00.003-07:00

I'm moonlighting as a freelance writer!

Really.

You can find me here.

Thank you Elizabeth Edwards

2011-01-02T09:53:00.004-07:00

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.

Happy New Year

2011-01-01T09:50:00.002-07:00

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.

Home is Where you Hang your Amaryllis

2010-12-28T22:14:00.003-07:00

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.

Well Hello Christmas

2010-12-24T14:10:00.003-07:00

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.

Did The Grinch Have it Right?

2010-12-19T22:03:00.005-07:00

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.

My Spanx Set Off the Security Scanner

2010-12-17T09:50:00.001-07:00

Today I found myself in Tulsa catching a flight for Denver and yet again facing the body scanner.

I thought I was a Pro by now. I stepped into my little pod, put my hands above my head and waited while they checked out anything and everything that could be on my person.

“Step to the side please ma’am,” TSA said, which I quietly and compliantly did. “Does your skirt have pockets?”

Well I don’t think so. As a general rule I try to avoid pencil skirts with pockets, I think they make me look too hippy. But I ran my hands around my skirt just to make sure.

“No,” I said, “No pockets.”

“Well I need to do a pat down. Would you like me to do it here or would you like to go to a private place?”

I smiled at this question. Would you rather have a bikini wax or your nose hairs plucked out? Either way, it’s gonna hurt and I’m gonna be red….one half dozen to the other.

So she starts patting me down. “I need to feel up your leg,” she said inching my non-hippy, no-pocket pencil skirt a little higher. “I thought I saw something metal around your hips.” Her hand continued to move up my leg. “If I can even get up there!”

If I can even get up there….any higher up my conservative, black, Nordstrom suit and I could ask the security line for dollars.

“Hmmmmm,” she stood back and looked at me perplexed. “Well there’s nothing, you can go.”

Well now hold on a second Honey, let me put myself back together. I pulled my jacket down, smoothed my skirt and felt my no-fail, holder of loose rolls, and container of that which cannot be contained.....my Spanx undergarments ….

….the one thing sitting right at my hips.

Could that be it? Could it have been the Spanx? It’s not metal but maybe my magic hold-your-tummy-in with-copious- amount-of-elastic-and-lycra-wonder-slip was just enough packaging to set the machine off.

That was the only thing at my hips.

This is my theory, the scanner does not like my spanx.

Any more spanx induced pat-downs and I might have get rid of my super tummy slip and start doing sit-ups instead.

Now that’s just crazy talk.

Rusty, crusty, banana, fana, fo, fusty

2010-12-15T10:12:00.001-07:00

One word accurately describes my current travel expertise.

Rusty.

My road-warriorness needs a little polishing.

This week finds me in Ohio, driving to West Virginia. It is cold, frigid and icy with a lovely wind that freezes my nose hairs.

It is so cold and icy that my manager and I upgrade to a four-wheel drive vehicle, the Ford Expedition, not an Explorer, an Expedition. It is huge, bigger than my first apartment. I found a family of four living in the back. And since I’m staying in the mid-west a little longer, it is in my name. I’m driving.

It’s a far cry from the Malibu Max with no seat warmers. My tushie is still cold.

I dropped my manager off at the airport yesterday afternoon. His last words to me were, “Don’t forget to fill up the car before you drop it off tomorrow. This thing’s a beast. I can’t imagine what Avis would charge us for gas."

I laughed. Of course I would remember to fill it up! I’m an ex-road warrior driving an Expedition from Ohio to West Virginia and back again. Of course I’ll get gas, Really, what kind of rookie does he think I am?

I took my time getting ready this morning. I had a two mile drive to the airport, my flight was at 10:00, all the time in the world, easy, peasy, lemon squeezy.

8:50 I pull the behemoth Expedition into the Avis lot and jump out. I have enough time to get a latte’ before the flight

As soon as the attendant got into the car to check the mileage, it hit me. I never filled up the Expedition.

A couple of choice words filled my head. “I forgot to fill it up,” I said to the attendant, “how much do you charge for gas?”

“$7.50 a gallon.”

This time I murmured my choice words. It was 8:55, I had an hour, could I do it? I couldn’t turn in a receipt for $200 in gas, I just couldn’t.

I zoomed back out of the Columbus Airport, the Expedition in full speed, searching for a gas station. 20 gallons later, I triumphantly hit the button for a receipt.

The machine mocked me “Please see attendant for receipt.”

NOOOOOOOO. I became one of those rude, business travel people barging into the Conoco, requesting a reciept. I needed an ass pass. Sorry World

9:10, back in Avis lot. “Hello Miss. You made it back!”

I grinned at the attendant and rushed to Security.

I’ve heard a lot about the new scanners at Security and haven’t given them a whole lot of thought. I now think they are awful. You stand in front of the machine for 70 seconds with your hands above your head while your body is being scanned. You are then escorted to a ‘holding area’ while they review the scan.

You can only imagine what this does to the security line.

My precious minutes slipped away. What would be worse, I didn’t get gas or I missed my flight because I did get gas? Neither option was appealing.

I made it to the plane, boots still in hand as they were loading seating section 4. I thanked the travel gods for giving this rusty flyer a break.

In the plane, I asked a man if I could move his jacket over a bit to fit my bag. He didn’t say a word looked at me like he would rather kick me in shins and took his jacket out of the overhead.

“Oh thank you so very much sir. I really appreciate your help.” I said to him giving him my best syrupy smile.

He said nothing but continued to glare at me, perhaps hoping I would self-combust.

I gave him a wink and thought bite me.

I sat back and felt the plane heaving into the air, catapulting 120 souls off to Chicago.

What a funny, funny world.

The Search for the Good

2010-12-13T20:45:00.003-07:00

It has been almost a week since I posted.

A week and I have been too busy to write. And I find myself a bit pessimistic, searching, and focusing on the silly and mundane.

I am also on a bumpy plane to Ohio next to the lavatory.

Of course.

When I don’t write, I forget to focus, to find the good. I miss looking for the little things. With Samantha, everyday, no matter how bad had sprinklings of good.

The joy of lifting her out of her car seat and carrying her into the house, her head resting on my shoulder.

Walking into her bedroom every morning just to watch her sleep.

Little sprinkles…

I now look harder but am so relieved when I do find them.

Today my husband playfully gave me a pat on the bum while I brushed my teeth.

His goodbye hug was a little longer as I would be gone for the duration of week.

He told me to tell the pilot he was carrying precious cargo.

Today I read an email from a high school senior who talked to her principal about doing a fundraiser for Miracles for Mito. She wants to help out anyway she can. She also asked if I planned on going down to Children’s over the holidays to make Christmas crafts with the kids.

The last statement still makes me grin. It also makes me consider that I should take a group of high school students to Children’s over Valentine’s Day to make Valentines because a group of high school students want to be involved.

Samantha taught me how to find the joy and it would be tragic to leave that gift behind. Every time I sit down to reflect and write, I am reminded to look for that gift.

Some days it’s a little easier with a pat on the bum and a high school student who took the time to talk to her principal about our cause.

I talked to our principal once. It wasn't about fundraising, more about silly string in the senior lounge.

What is your legacy?

2010-12-07T22:16:00.004-07:00

A couple weeks ago a couple of couples sat around a couple bottles of wine and discussed the meaning of our lives.

“I don’t think I have any regrets in my life,” I said. “Okay, slight regrets where my mouth got ahead of my brain but no big regrets…..nothing that I would change.”

Oh wait…..

I stopped myself. “I will forever regret it if I don’t finish the book.”

The book…..that daunting, unfinished piece of my life.

“The book is your legacy,” A friend of mine said to me today. “Samantha is your legacy. You, have a legacy to live up to.”

Well that’s almost as daunting as the unfinished book. I feel like Harry Potter whose calling is to defeat Voldemort, Bilbo Baggins and the ring.

I have a legacy to fulfill.

PHHHHFFFFFFF……

Last week we had our first board meeting of Miracles for Mito and it was really outstanding. We decided on a logo (to be posted soon) and met with Dr. Van Hove who gave us many, many ideas on how our foundation can be impactful.

We have quite a lot of work to do.

Driving home I developed a legacy stomach ache……an impactful, legacy stomach ache. Perhaps it was the pepperoni pizza , perhaps it was that last cup of Starbucks, perhaps I felt a bit daunted, uncomfortable in this new skin….regardless, I found myself driving home without my work pants.

That’s right, the wool gabardine just wasn’t working with my crampy, overwhelmed, twitchy self, so I pulled over on exit 235, took my pants off and drove home sans trousers…..I have to say it’s quite pleasant, especially if you turn the seat warmer on high.

And my crampy tummy felt much better.

Sometimes you take yourself a little too seriously when you start talking legacies. That’s when it’s time to drive home in your big-girl undies.

I Miss the Hospital

2010-12-02T21:11:00.003-07:00

I do, I miss Children's Hospital.

Now how wrong is that???

Days after we lost Samantha, Grandpa Jim came to me with watery eyes.

"Don't be upset with this," he said "but I'll miss the time we spent in the hospital. Not when she was really sick but when we knew she would get out soon....that she was doing better. We all hung out, had dinner, drank smuggled wine and just talked."

Now how could I be upset with this? I knew exactly what he was talking about. "I know, I'll miss that time, that simple down time too."

But I never knew how much.

Our dear friend Jacob was in the hospital this week. I decided his mom, Maria needed smuggled wine and sushi.

I also needed smuggled wine, sushi, and a little Jacob and Maria time.....so I invited myself to Children's.

Driving up to the hospital, it had changed from 6 months ago. The holiday lights are up. They are building two new hotels on Colfax and have just started with the new wing.....so many changes without us.

Because we need none of this.

Not anymore.

And nothing finalizes where we are in life than driving up to the hospital, a place I know so very well, a place that was the apex of our lives and realizing that we do not need this place anymore.

We never will.....not again

But maybe, just maybe, it needs me. Maybe if I can only bring smuggled wine and sushi, it is enough.

On the 9th floor, I watched Maria suction Jacob. Her eyes were as intent as a rocket scientist. She knows her Peanut well. She directed the nurses and finally sat down for a little glass of grape.

And we talked. We talked about Samantha, Jacob, the hospital, relationships, life, death. And I realized that the best thing about being in the hospital, with your kiddo doing okay, is that you can just 'be', and talk.....and so can your visitors. Everyone can slow down, eat a caterpillar roll and know that you all are in the best possible hands.

Is there anything better?

As I left, I stroked Jacob's thick hair, watched his lovely long eyelashes and commented on how he and Samantha look so much alike.

It was almost as if she was there.

She probably was.....telling me not to dismiss this place....this place that saved her life so many times. Maybe it still needs me. Maybe I need this place too.

Maybe.

You Got That Right Pilgrim

2010-11-28T22:02:00.005-07:00

These are my Grandparents....my Popa and Dodie. I still wear Dodie's jewelry with utmost pride.

Aren't they beautiful?

Today my Popa would have been 89. He died almost 15 years ago, leaving a legacy in the Simms household.

Dodie is in Hospice and isn't quite sure who I am.

But that's okay. I love who they are in this photo.....fabulous and untouchable.

My Great-grandfather did quite a lot of genealogy research to find that we are descendants of the Mayflower.

My Popa was quite proud of our lineage. Every Thanksgiving he reminded us that we are from a tough, proud, prideful stock.

In the first year, the pilgrims lost 56 of the 102 who sailed over.

And they still found reasons to be grateful.

On November 25, 2010, our first holiday and four months after Samantha's death, we found reasons to be grateful.

I am grateful that my other set of Grandparents joined us; my Grandma Clem and Grandpa Al. Who has so many grandparents on the eve of 40???

I am grateful for the turkey button that pops when the turkey is done. I am thrilled I produced a golden-brown, beautiful turkey.

I am grateful that my friends tried to talked me out of a potato ricer. I didn't listen but I am still grateful that you cared. And by the way, you were right.

For sale.....one potato ricer. Used once.

I am grateful that 18 of us gathered around a table.

I am grateful for 18 of us who chose to celebrate Thanksgiving at our home.

I am grateful for a family who loves us....who shares in our pain, our triumphs, and in our ultimate, evolving love for our girl.

I am grateful for friends who touched base just to make sure we were okay this Thanksgiving.

We have endured our hardships this year but we gathered around a table with pride, happiness,love and that stubborn determination......

.....that will move forward....because if we don't, what else will we do?

You got that right Pilgrim.

Happy Birthday Popa.

Logo a Go Go

2010-11-23T20:29:00.003-07:00

My friend and fellow Miracles for Mito board member Laura called me this afternoon.

Of course I missed the call.

"Call me," was all she said and then hung up.

She called a bit later.....

"Call me!!!!"

My first thought was that something was wrong....I've been a bit programmed to think that way.

So I called her in the middle of Walmart in my search for a potato ricer for my Thanksgiving mashers.

"The logos are ready," she said "Luke sent you a copy."

Luke is our wonderful graphic designer who is working with us for Miracles for Mito.

He has logos......

he has our logos.....our logos for our non-profit.

Nothing like getting a little teary at Walmart in the middle of kitchen applicances. Turns out the Walmart ladies don't know what a potato ricer is.

My mashers just might have to be mashed.

But it's all good......I thanked the ladies of Walamrt, left with two boxes of Triscuits and a thankful heart.....we have logos, fabulous, beautiful, impactful logos.

Oh the Places I Will Go....

2010-11-22T22:05:00.005-07:00

Last week I found myself in Florida at a client meeting. I packed up my overnight bag and kissed hubby goodbye.

I landed in Florida in time to see the sun set over the ocean.

30 hours later I was back home watching the end of Conan and wondering how long I could snooze on the couch until hubby collected me for bed.

For someone who spent the last four years sequestered to the living room, Samantha's bedroom or Children's Hospital, I find it quite odd that I can wake up to snow on the ground and four hours later comment that Florida is definitely too hot for a sweater dress.

It is all so seamless.....a toothbrush and a pair of underwear and poof!! you are 1,600 miles away from home.

We went on two trips when Samantha was alive; one to visit hubby's parents. The other was when hubby's dad passed away. They were both BIG deals, requiring days of planning, formula, oxygen, letters from doctors, special seating and a gallon jug of Purel. We were about as seamless as a rhinoceros in a smart car.

And people complain about a pat down.

Last week everything fit into my little overnight bag.

And yes, note to self......Florida is way too hot for a sweater dress.

Incident

2010-11-16T21:42:00.003-07:00

Our fabulous foundation, Miracles for Mito is supported by another foundation that helps non-profits get on their feet.

They are wonderful and handle all of the details that I don't like....

I'm not a finance person. I'm not a lawyer. The only thing I know about HR is that I need to bring my social security card and driver's license on the first day at work.

Rules confuse me.

So, I am handing off the handling of the rules to the non-profit development center....happily handing this off.

The other day I sat at the CNDC orientation. Since they handle our legal issues, we are obligated to inform them in the case of a health 'incident' at any event.

I had to raise my hand.....in the special needs community, we have many 'moments' that others may qualify as an 'incident'.

What exactly qualifies as an incident? I asked. Our kids have seizures or medical issues when they are out and about but it's really no big deal. The parents know how to handle it. Do you want me to call then?

Do you call 911 with a seizure? They asked.

Not always....sometimes.

Well, she paused, maybe if they had a seizure but the parent wasn't happy with how things were handled, then maybe call us to report an incident.

This didn't settle with me......our parents aren't the type to blame anyone else for the 'incidents' that can happen with our kids. But a call to emergency services is still a call to emergency services.....so I asked What if we just call you if we ever have to call 911 during an event?

Perfect. She said.

And there was my answer. In many non-profit event worlds, a seizure is a big deal.....an incident causing, report it big deal.

We get the call us only-if-it's-a-911-seizure-incident-reporting clause.

It's nice to work with people who understand our people.

My Two Suitors

2010-11-13T16:34:00.003-07:00

I am a woman with two suitors.

Last night I fixed a lovely meal and rented Iron Man 2 to watch with Hubby.

I didn't think I would like Iron Man 2 but I love my hubby and he has been wanting to see it......ahh, the sacrifices we make.

But instead, My Grief entered around 8:00....uninvited, unwanted, and picked me up, carried me into Samantha's room and placed me on her bed.

And I cried. I cried in the company of My Grief who had become huge and overpowering....apparently feeling like I had neglected him for a bit too long.

I cried myself to sleep.

Hubby came in after my cry with Grief and escorted me to bed.

"I love you," he said as I drifted off.

He had rescued me....just as the princess is rescued from the dragon's claws. He confronted My Grief, my huge, over-powering, Iron-Man-night-ruining Grief and took me back.

Grief can be a mighty monster to challenge. We'll watch Iron Man 2 tonight.

I am Not the Statue of Liberty:

2010-11-10T18:03:00.003-07:00

My first business trip in years was last week. I went to New York. I LOVE New York, I really do. I love the energy of the city, the shows, the food, the shopping….love it.

I my first consulting gig was on the eve of my 30’s in New York. Ironically, on the eve of my 40’s, I have returned back to my Big Apple.

I returned back in my business suit, heels that felt good in store (now not so sure), laptop in hand…..wondering who I was.

The uniform is the same but the person behind it has changed a bit.

Flying in, I could see the Statue of Liberty. For years I would fly in every week and see my Lady Liberty hanging out in New York harbor. There she was….just as always; same sandals, same book, same torch.

“Hey Libs”’ I said as we flew over (we’re on a first name basis), “how is it that I have had to redefine myself three times in the last ten years, turned completely grey, gone through several identity crisis.... and look at you…you don’t look a day over 120. You haven’t changed a bit.”

She looked up at me with her wise eyes, “Oh Heather, I’ve been holding this stupid torch up for ages. On average, I get struck by lightning four times a year and there is nothing I can do about it. These toes? These toes have been exposed for 44,640 days and no one has had the decency to give me a pedicure. I would love to change it up.”

At this point the plane was heading into Queens so we waved a quick goodbye. There we were, me and Lady Liberty….one who is yearning for a change after 126 years and one who would had just gotten used to her life when it changed drastically once again.

As we landed I begrudgingly slid my feet back into my kitten heals. I thought longingly of the comfy shoes I had left at home. Funny, four years ago I couldn’t even talk about leaving the corporate world behind for a sick child and a pair of sweat pants…..I was so very sad about the change I had to make. I missed the social life of the coorporate world. I yearned for conversations over the Harbor with Libs.

And now we were back where we had met ten years ago…..a bit wiser, both of us needing a pedicure, both looking onto the horizon wondering what is next….both struck by lightning a couple times in the past decade.

Well.......at least I could get a pedicure. So that’s just what I did.

Thank You Dr. Van Hove

2010-11-08T20:52:00.003-07:00

I'm breaking a rule here......

I try not to post names of doctors we have worked with personally....

But this doctor has recently created a little niche in my heart.

These last couple months have been very, very busy. I have started a new job and a new foundation and the two are very, very mutually exclusive of each other.

So as I'm trying to find my bearings on each I wonder, What the hell am I thinking?????

I find myself a bit (?) overwhelmed.

But we have a doctor....Dr. Van Hove, who works at Children's in the metabolic clinic and now the new mitochondrial clinic.

When I first met him, he saw Samantha, gave his unknown diagnosis and made me cry.

The second time we saw him, he made me cry again....

But Dr. Van Hove's job is not easy. He works with children who are chronically ill.....children whose bodies do not process energy correctly, children who are very, very sick and incredibly difficult to diagnose.

He is also a scientist. He will look at a child and observe their skin, their hair, toe nails, facial abnormalities....anything for what will give an indication of what is going on. The more we saw him, the more I appreciated his passion for his work, his dedication to find out what was really going on in these little bodies.

And now, Dr. Van Hove has become our Number One fan of Miracles for Mito. When I sent out our first email of 501c3 acceptance his response was....

WaHAW! Good Move...Johan

This response made me smile.....so out of character of our formal European scientist.

Today I invited him to our first board meeting, his response was.....

Thank you.

No really, thank you, Dr. Van Hove. If I ever doubt what we are trying to do, all I need is an international doctor of your caliber to validate what it is needed...and the importance of what we are trying to create.

And the world doesn't seem quite so overwhelming.

Have we become so nasty?

2010-11-07T14:25:00.003-07:00

A couple days ago I heard a story on NPR about how our society does not say 'please' and 'thank you' as it did 30 years ago. After traveling last week, I thought this was an interesting and accurate observation so I did a google search for the article.

When I searched 'NPR....manners...2010..' all I could find was the story about Juan Williams being fired due to what he said on Fox News.

I laughed....apparently we all have to work on our manners.

Today I read an article in the paper about Representative Bart Stupak. He is a Michigan rep who served nine terms in Congress but chose not to run this year because Washington D.C. is 'so hateful now'. This was after he was called a "baby killer" on the House floor.

'Baby Killer'....by another colleague....apparently the nastier your comments, the more national attention you receive.

Have we become this inappropriate? Where are the boundaries for decency?

Traveling for business is funny business. It has the tendency to be the world of eye rolls, deep sighs, concerns about upgrades.....how will this journey be of least inconvenience to me? I used to be one of those people....wrestling for overhead luggage space....but now it doesn't really seem as important as it used to. Ironically, four hours in the back of the airplane is doable compared to four hours in the emergency room with a seizing child.

On my flight home, I sat next to a man who was quite upset that there was nothing to 'snack on'.

"It's a four hour flight," he said. "You have nothing? No pretzels? No chips?"

"I'm sorry sir," said the flight attendant. "You can purchase a snack box for $5 but that's all we have."

"Ridiculous....this is f*&*ing ridiculous." He replied and flopped back in his seat.

"Sir," I said to my vocal neighbor, "I have a bag of cashews. Would you like some?"

He smiled sheepishly. "Thank you," he said, "I'm just so hungry," and helped himself to a handful of nuts.

I tried not to focus on if he had washed his hands before fondling my cashews.

Now, I am not a saint....nor am I a calm person. I can be spittier than a tomcat if pushed but I think we have become a world so focused on making out point, on being right, on proving the other wrong....Yes dear sir, you're right... it is ridiculous that there are no snacks on a four hour flight....but is it worth an f-bomb at the flight attendant?

The end of the article about Representative Stupak stated that it didn't matter if you agreed or disagreed with his voting record, this nastiness in our nation's capital is no good for America. Based on my cashew experience....I think I agree.

So I am making a vow....I vow to think before I speak, to please and thank you, reserve my eye rolling to a minimum and to not engage in this ugly tone of our national conversation.

You may hold me to it.

I will also carry a bag of cashews and a bottle of Purel on all further flights.

Today

2010-11-02T21:17:00.002-06:00

Today you can find me in Manhattan :)

You can also find me at Hopeful Parents, encouraging you to vote earlier today. Hope you did and I hope it made you hopeful.

XO-
Me

50,000

2010-11-01T21:35:00.002-06:00

Yesterday the Samsmom blog hit 50,000.

50,000 people in the last 3 three years have come to visit our blog. You have embraced our family, fell in love with Samantha, prayed with us when times were hard, mourned the loss of Lil' Miss and now you continue with us on our eternal journey for healing.

Thank you.

In honor of 50,000, I give you our very first blog post. It's an oldie, it's been published a couple times, but I think it a goodie. You can find it here.

And to the next 50,000...thank you for being here with us.

XO-
Me

A Safe Place

2010-10-31T21:13:00.002-06:00

Today my friend Laura invited me to her Unitarian Church service.

Today is their Annual Day of Remembrance. It is about remembering those who are no longer with us.

It was beautiful.....I cried and cried but I wasn't sad. I am always very relieved when I find myself at a place where I can let myself go and have a good cry. I love a safe place. I embrace a good cry; a chance to let my guard down.

Ironically, I now embrace a good conversation about the mortality in life. We can't escape death. It is something that effects every family. It is something that has touched all of us. It is something that cannot be ignored.

But death in itself was not the purpose of today's service. Today's service was how we need to embrace each other during this process. That we are all together as a community and our job as a community it to celebrate our short, lovely, joyous, life we have with each other.

And that the only way we can get through the sadness is together.

And this made me cry again. Because if one thing has held true in losing Samantha is that we have and continue to, get through this together.....all of us.

At the end, we were invited to go up to the altar and place a memento of our loved one. I brought Samantha's pink shoes that ride with me in car. I got up to the front with her cute, pink, patent leather Mary Janes and said, "for my daughter."

And proceeded to ugly cry to my seat. The ugly cry has become a good friend.

I went to sit down but the man in front of me turned around, embraced my hand with tears in his eyes and hugged me.

I hugged him back.

Because you have to get through this together.

The journey of a thousand miles begins with one step. Lao Tzu

2010-10-28T22:28:00.003-06:00

Today Miracles for Mito was accepted into the Colorado Non-profit Development Center.

We now have a 501c3 number.

We are now considered a non-profit.

We are now official.

I am the Director of a Non-profit!

Haha....look at me....Mrs. Director.

I sometimes think that we are not doing enough...that we are moving too slow. We need so much....a logo, a tagline, a brochure, a website, events......so much to do and not nearly enough time in the day.

But two months ago this little organization did not exist and now look! Honestly, this whole thing has fallen into our laps thanks to the wonderful people who surround us.

So I invite you to take the first step of 1,000 miles. Really....we'll have some fun :) Who knows where we will end up!

Whoa Girl

2010-10-27T17:20:00.001-06:00

Caring for Samantha taught me many different things.

She taught me to look at the facts with a critical eye.

She taught me to ask questions and pay attention….and that no one sitting in the room is exempt from a question.

She taught me to focus and to check everything…..to be passionate and diligent about the work I did.

Because that work was about her.

Because it was indeed about arms and legs.

Being back in the business world, her teachings have paid off. I am focused, somewhat direct and I check everything.

Apparently I have become a little passionate about the work I do now….perhaps a little too passionate, perhaps a little overzealous.

I sat in a meeting today about a client I will have in January. Decisions were being made about the future of this client and I didn’t say a thing.

But I have to voice my opinion…decisions made here will affect me....

So I did…I spoke….. but the voice that came out wasn’t the business Heather of four years ago. It was Hospital Heather whose last meeting around a table involved four doctors, two specialists and the welfare of my child. Apparently this voice had been cooped up a little too long.

Whoa Girl….it is no longer about seizure control….it’s about marketing.

I was able to dial it back but I found myself searching for old Business Heather with perhaps a Hospital Heather flair. I can only wonder what my colleagues think…..

Wow….that Heather really, really cares about her clients!

Yeah, but maybe that second latte’ should be decaf.