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.

I am a woman with two suitors.

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.

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.

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 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

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

Today Miracles for Mito was accepted into the Colorado Non-profit Development Center.

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.

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