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

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.

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?

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.

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.

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 🙂

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 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.

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.

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.