Nitty Gritty Dirty Grief

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!
Nitty Gritty Dirty Grief

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… 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.

Nitty Gritty Dirty Grief

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.

Nitty Gritty Dirty Grief

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….
Nitty Gritty Dirty Grief


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… 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… 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… 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….


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.