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.

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.

Now how wrong is that???

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.

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.

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.

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.