I am Not the Statue of Liberty:

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

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?

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.

50,000

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

The journey of a thousand miles begins with one step. Lao Tzu

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

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.

3 Months

It’s October 25th. It’s been three months since Lil’ Miss left us.


Funny the things that hit you.

One month didn’t bother me…..two months didn’t bother me.

Three months is hard.

Maybe because life moves on at three months; it moves on with an unnatural normalcy. People go to work. People interact with each other. People live.

People live…..and Samantha has been gone for 90 days.

When we lost Jack, we were told we could try for a another baby after 90 days. I ticked off every single day until we reached 90. Every single day got a check mark…..

and the days crawled by. It seemed unfair how slow one day moved to another.

But now, since I don’t have to count down to something else, these 90 days have passed by so fast….how quickly life can move on.

The other day I found a poem I wrote a couple years ago; right around the time of Samantha’s diagnosis and the passing of hubby’s dad. I have been hesitant to post it because it’s a bit dark.

But what the heck, sometimes I can be a bit dark. It reminds me that I was grieving a long time ago…..

I howl at the lonely moon

Raw and unleashed, my cries pierce my fragile skin, pierce the bandage on my wounded heart. Hopeless, helpless, I am consumed.

I must be contained, silenced.

I swallow. Stuff myself into the tight, black, polished pump. I smooth my black dress and paint a smile on my white face.

I mist at the chorus of ‘I’m sorry’. I do not meet concerned eyes. I nod and drift through the crowd.

Tonight, alone, I will remove my black heels and unleash my sorrow.

Now I can only pick at the lilies.

Today I sat in a meeting. I was a bit down about our three month mark and I looked at all the other faces at the table.

How many of us hide something? Stuff our pain into our black heels? Pick at the lilies?

Sometimes…those days when I howl at that lonely moon….sometimes those days are good. In a world that is so very contained, she taught me that I am not.

Itsy Bitsy Teeny Baby Steps……

When Samantha died, we started a memorial fund.


And thanks to your generous contributions, we raised a significant amount of money.

And I thought…..what do we do with these generous contributions????

We could write a blanket check to Children’s….but we don’t know where it would go…

We could write a blanket check to the UMDF, for mitochondrial research but again….would anyone know who gave it? And why? Would anyone there care about our story with Samantha? Would anyone care about our story with Jack?

I needed more. You…..dear contributor…..deserve more.

So we have started a group for mitochondrial awareness in Colorado. I don’t ever want another family to ever feel as lost and hopeless as we did.

We have named our group Miracles for Mito. (Go and ‘like’ us on facebook!)

Today I met with the Colorado non-profit development center to establish ourselves as a legitimate non-profit with a real 501-c3 number.

We find out in the next two weeks if our application met the non-profit requirements and if we are accepted.

Keep your fingers crossed.

At times we are swimming upstream. At times the meaning behind what we are trying to accomplish seems insurmountable…..who knows what a mitochondrial disease is? Why should they know this? Why should it matter to them?

Every 30 minutes a child is born that will develop a mitochondrial disease before the age of ten….

That fact….if nothing else….should keep me in game. That fact and the fact that Lil’ Miss won’t let me stop taking these teeny, tiny, baby steps to make a difference…

….we just might make that difference.

Crossing fingers and toes….

PHHHHHFFFFFF

When Samantha first got sick I had to quit my job. I wandered around the house, yearning for a conference call, hoping for a meeting, a chance to don a business suit ….wondering who am I now????


Ironically, four years later, I still wonder the same thing.

The alarm went off at 6:30 this morning. I was on time, I was feeling good…feeling on schedule.

And then I attempted to get dressed.

The last time I worked a professional job was four years ago….after two pregnancies and maternity leave. I have now dug deep, deep into my closest to find hints of who that professional person used to be…..

Today I put on a pair of dress pants….not bad….

And then I tried to find a sweater. The first sweater didn’t fit right….it has never fit right…..I have no patience for things that do not fit right…..in the Goodwill bag. The second sweater had been dry cleaned five times and still has some sort of brown goo on the shoulder. The third had a hole right next my belly button.

3 sweaters, 3 additions to the Goodwill bag….one late me.

I finally got dressed and ran out of the house.

I returned once because I thought I left the coffee pot on.

I returned twice because I forgot our overdue library DVD’s.

Really late.

Really late and now being tailgated on the highway…..so tailgated I sped up to get into the other lane and out of said tailgaters way.

Pulled over by state patrol ……Mother f*&$#%!

Let go by state patrol due to my plea that I was only trying to get out the way….Thank you State Patrol Gods.

I pull into Starbucks to buy a Venti Latte’ to calm my nerves.

A Venti Latte’ to Calm My Nerves

Ironically, I sometimes miss the calm days at TCH……

I also now have a smart phone. It’s a Droid 2…..it sits next to my computer at work and every once in while talks to me if it gets bored……if it doesn’t feel like I’m paying enough attention it yells out….

DDDRRRROOOOIIIIIIDDDDD…..

My phone yells this in his computer Droid voice. I swear someday that phone is going to grow legs, crawl off the desk and take over the world. I won’t be able to stop him….

I’m frightened of my Smartphone.

I couldn’t figure out how to unlock Mr. Droid this morning. I had to call hubby.

Hubby laughed at my Droid fear and told me I could turn the voice off.

Yeah…right…..right after Mr. Droid grows those legs.

I’ve given Mr. Droid a name….Darryl….Darryl Droid. Now that doesn’t sound like a phone that wants world domination, does it?

I hope not…..when did the world get so complicated?

I miss tube feedings.