Wednesday, July 25, 2018

This Shark, Swallow you whole

 
 
This photo was from my 40th birthday- six months after we lost Samantha.
 
A friend quoted it perfectly, "And then Heather opened her mouth, took all of her friends and swallowed them whole."
 
And I would have.
 
Because I was so empty.
 
Oh yes dear friends, swallowed you whole. Anaconda ain't got none...
 
But that was 8 years ago. Eight years ago when Missy Moo left us. Eight years ago today.

I still pose with an open mouth


 
 
 
 

 
 
 
 
Even in the final photo.....in front of hundreds of people accepting a great big check...
 
Mouth
 
Wide
 
Open
 
Eight years later, would I still swallow you whole? Nah, I think you might be a tad chewy. Dare I say too spicy?
 
But more importantly, I don't need to anymore. The hunger to replace a famine in my soul has subsided, the want, desire, the miss, it is no longer so gut wrenching and desperate. Eight years later.
 
You all have helped me to fill that void and for that I am forever grateful.
 
So despite the perpetual open mouth, I no longer need to devour you.
 
Perhaps a nibble.



Sunday, July 8, 2018

Hope is Being Able to See that there is Light- Despite all of the Darkness- Desmond Tutu


A mitochondrial diagnosis is dark. And lonely.

Here is where your donation will go to provide some hope and light.

Every 15 minutes a child is diagnosed with a mitochondrial deviation that will manifest by age ten. Since mitochondria generate energy within muscle and organ cells, clinical problems such as seizures, heart and liver issues, vision and hearing loss, muscle weakness, migraines, and developmental delays are prevalent.

Because of the complexity of the disease and the difficulty in getting an accurate diagnosis, mitochondrial disease is considered rare and is grossly underfunded. In 2012, our clinic at the hospital was at risk of closing its doors. The funds raised by our team enabled the clinic to remain open and continue to employ its researchers.

It is because of this team and their amazing efforts that we have a research presence in Colorado.

2013 we purchased a diagnostic piece of equipment for the lab called an Oxygraph. The Oxygraph measures oxygen exchange from one cell to another and can analyze where the breakdown in energy exchange happens.

2014 we contributed funds so that our neurologist could input needed data to make Children’s a part of NAMDEC – the North American Mitochondrial Disease Consortium.

-  This contribution made it possible for Dr. Austin Larson to come to Children’s through a  NAMDEC grant. He joined us as a fellow and is staying on as an Attendee focused on Mitochondrial research, treatment and clinical testing. Dr. Larson spoke and met with families this year at the UMDF conference- we are very excited to have him on board.

-  2015: We continue to support the clinic and bring on another research assistant

-  2016: We sponsor a grant between Dr. Larson and Dr. Green to fund a research project looking at the link between mitochondrial deviations and type one diabetes.

 2017: We have a protocol approved by Children’s Hospital to study mitochondrial disorders specifically in Colorado

-   Stealth Biopharmaceuticals announces that Children’s Colorado will be a trial site for a new mitochondrial drug Elamepretide.  This trial was only granted because of our ability to show sustainable, financial support to the clinic- all through Summits for Samantha. 33 sites were chosen internationally

And in 2018…. Children’s Colorado became part of the Mitochondrial Network of Care; one of 23 national sites.

-  Our researcher was awarded an NIH grant to advance her work. The Oxygraph we purchased was instrumental to her research.

-   We will see our first clinical trial patients in July

-  We continue to provide supplements, support and family grants to our mitochondrial community

What will next year bring????

All because of you.

Monday, June 18, 2018

I would break the law for my child

Nothing like an international crisis to get me writing again.

I've been in a terrible mood. I should probably unplug, stop engaging with those not in my camp, get a pedi..... But nothing like Fathers Day coupled with a side of mass family separation in the news to send me in tailspin.

Okay, tailspin is a slight exaggeration, more of a little hiccup.

But as I accidently got engaged in a argument with someone who lovingly called these Littles at the boarder 'Spawn of Derelicts' , I realized we got some haters running around.

My rational mind screams, do not engage! do not engage! But all the sudden I think I'm Luke Skywalker bulls-eyeing womp rats in my T-16 and I fire. And I am engaged. Shit. It's me and Darth Vader. Or according to some, I'm Darth Vader

Here is what I do know from my own broken, life-long-separated-from-my-own-Littles head.....

We cannot use our children as pawns.

We cannot use our children as pawns.

We cannot. We cannot. We cannot.

This emotion we are toying with is so primal, so instinctual- nothing is more violating to our core than separating us from our Littles.

Put them in an air conditioned facility. Feed them peanut butter and jelly. Put them in front of a nonstop reel playing SpongeBob Squarepants and give them some crayons. Tell yourself you are doing the right thing.

And then go home and smell your child's head. Inhale that primal scent that goes back to the very first time you smelled that sweet head. My god.....nothing smells more pure.

Imagine someone taking that sweet scent away from you.

What would you do?

Is the thought unimaginable? Because it should be.

When Samantha was a babe I 'smuggled' a non FDA seizure drug into the US from Canada. This drug stopped her hypsarythmia and her constant seizing. One evening UPS didn't deliver it on time and I drove four hours to pick it up right before the fulfillment center closed for the weekend. I made it five minutes before they closed.

I sat in my car with this precious medicine in hand and sobbed. Sobbed because I made it. Sobbed because my daughter needed this med that we could not get in the states. Sobbed because we were so very vulnerable and at the mercy of so many others. Sobbed because I would have knocked the door down had it been locked.

We are wired to fight like hell for our kids.

Yes. Polices need to be changed, both sides need to come to the table. But in the meantime, do not underestimate the irreversible harm we are doing to parent and child.

Smell that head. Tickle those feet. We only want what is best for our Littles.


Sunday, March 25, 2018

It's the Only Place I Have to Live In

I have created my own physical activity trifecta.

My very own hat trick:

The Bike

The Swim

The Orange Theory

I KNOW! It's so very trendy right now. It's the cult of the Orange Theory and I have to say they got me. They got me by my expanding biceps.

Seriously, I now have biceps. I came home the other day and flexed my arm in front of Hubs. And he said "Well look at that. I see a muscle."

My body is far from perfect. I have a knee that hates me, my very own neuro-muscular condition that has me on meds and other issues that any 47 year old fights.

But it is mine. And it works. And when I think of the many things I am grateful for in this world, this flawed, functioning body of mine is one.

Yesterday at Orange Theory, I climbed up on the bike (because I can't run on the treadmill....silly knee) and I stared back at myself as I started to pedal. We are gearing up for our silent auction and my Mito Peeps are on my mind.

I thought of Sammers, my brother, our kiddos, our adults.....our people whose bodies can't work like they should.

This body is all I have. It's all any of us have. Be so grateful it gets you out of bed, walks you to the bathroom, gets you to work......climbs you on a bike at Orange Theory.

I am now twenty minutes into my workout, super slimy with sweat, my heart rate has gone beyond the orange zone to the red and I think I might just be a tad pukey.

And I love it.

I love this beating heart. I love that I smell like a high school gym locker. I love that this body works.

This old lady, wonky knee, can't-sneeze-without peeing myself  body.

In less than two weeks we will break bread and pour a glass of grape in honor and in memory of our Loves whose bodies are starved for energy- whose bodies want to be more; Our Mitochondrial Community.

Join us on the 7th. If for the only reason that your body is good place to live.

I'll even flex a muscle :)

http://www.miraclesformito.org/fundraiser2018



Tuesday, March 6, 2018

I Got No Roots

I came up with the idea for this post when on nitrous oxide.
 
So please forgive me if its random....ha! Like my posts aren't. For the record, nitrous oxide is kind of awesome as a controlled substance.

No Whippets.
 
I do not like going to the dentist. At all.
 
I think it started with several wisdom teeth extractions during my teenage years by a man named Dr. Maul.

20 shots of Novocain, I was numb enough to pull those suckers out.....with resistance. Do you know how long those wisdom teeth roots are? They connect to your thigh bone and never let go.
 
Never go to a doctor with the last name Maul.
 Image result for little shop of horrors dentist

Promise me.
 
The Samantha years brought tooth neglect...years of it. I didn't have the time, I had Dr. Maul nightmares and here is the thing about going to the dentist......you walk in and your teeth feel okay. You walk out and your teeth hurt. I had no time for self induced hurt. 
 
After Samantha, I asked one person for a dentist referral. Note to self.....when looking for a referral, ask more than one person. I ended up with Huey Lewis and the News. I kid you not. He knew every 1980's song, He had every teeth whitening kit ever made. His purple rayon blazers were super rad but after my third re-do on a root canal we had to break up.

It was 2011.
 
WHY WAS THIS SO HARD!!!!???? I wondered as my teeth slowly rotted out of my head.
 
Vulnerable.
 
Nothing makes me feel more vulnerable than a dentist.
 
Image result for little shop of horrors dentist
 
 
I'm not sure why....
 
Related image
 
This afternoon I finished my third root canal.....I got no roots. But now I do have a really good dentist who sat next to me before the procedure, held my hand and said, 'what would give me an 'A' today?'
 
And I said 'No pain.'
 
So he strapped on the nitrous oxide (for me, not him), he gave me some headphones and I listened to my new obsession, Hamilton.
 
The below was not the situation, but I find it funny :)  
 Related image

What is my point???

I have none. Did I mention I was on nitrous oxide when I thought this would be a great blog post?

Okay....maybe here it is. Take care of your teeth. That little molar in the back was a part of me for 47 years and in five minutes he was ground down to a stub, never to be heard from again. Adios little tooth. Thanks for hangin' in there. I'm sorry I couldn't do you better.

Second? It's okay to say when you feel super vulnerable and need some help.

Third? Never go to a Dr. Maul.

Monday, February 26, 2018

My Brain Loves Me

It's true. My brain loves me.
 
And at its very core, the responsibility of my brain is to keep me alive.
 
I try to distract it by remembering the words to every single Neil Diamond song. But my brain has more important things to do. It keeps my heart beating, my pancreas processing glucose, my eyes seeing the word, my temp at a 98.5.
 
My brain loves me.
 
It also loves routine and muscle memory. My brain tells my foot to step on the brake when it sees a red light. In my sleepy state, my brain tells my index finger where the snooze button is. It tells my voice to say hello when answering a phone.
 
47 years of this life, my brain and I are pretty connected.
 
I like to think of how my brain would react when tested. How it would process the perfect snarky comment, the best response in a meeting, the perfect reaction when being flipped off on I-25. But so many times this brain I love and that loves me lets me down. Maybe it's caught off guard; it didn't anticipate a middle finger in the exit lane or that really tough question in a meeting. My brain likes routine.
 
There is nothing routine about a traumatic situation. Our brain hates it. The amygdala hijacks all rational thought. We search for something routine, something we can relate to; in a traumatic situation, there is nothing. Our brain, whose purpose is to love us and keep that heart beating, makes decisions we would not usually make, we rage, we puke, we freeze, we faint.
 
Our brave, our first responders, our doctors, nurses, our military, spend their lives training to respond in these very worst situations. And sometimes even their brain has no place for a trauma. With Samantha, our interactions with medical teams involved input from us. Their brain needed a place to process and trauma offers no chance to process.
 
My point....and I do have one.....is that if your brain is lucky enough to not have a history of processing trauma, assuming heroic actions from your brain that loves you and just wants to protect you is silly. And disrespectful to your brain....your brain that loves you so.

Thursday, February 15, 2018

It sucks to lose a child

I have so much to do tonight.....so many productive, society enhancing projects and instead I found myself in a gun debate.

F$CK!

I gotta tell you, these shootings make me crazy; sad, mad, frustrated. And I keep thinking.....just walk away. Walk away.

But I can't.

I fought so hard for a life. And so many others fought for her life too.

This taking of lives is so far beyond me.

The crater that person leaves, the lives that have been blown up. I cannot put my head around why anyone would want to create such destruction and why it keeps happening more and more often.

As a society, it is hard to comprehend the impact these loses have over time.

It sucks to lose a child.

I cannot tell you how much it sucks.

The first week you wonder how your eyes can generate so many tears. You think you are all dried up but they come again- in flooding waters. You think your eyes might wash out of your head.

And you get through weird things. Things that are so awful there is no dialogue in your brain to process it. How do you process your child's funeral?

"What music do you want played?"

"What the holy hell? How the f*ck am I supposed to answer that god awful question?"

But you come up with an answer. And it is brilliant. Because everyone is looking at your flood-water eyes for an answer.
 
And you think "okay. I might be okay."

But you are not. You are so not.

You get a freezer full of lasagna.

You hate that lasagna. It will stay in your freezer for years. Stupid, grief lasagna. Dropped off at your door with the very best intentions.

You congratulate yourself for putting on pants.

You forget to brush you teeth.

You think you are in hell. You wish you were in hell.

Someone tells you that you need to brush your teeth.

Two weeks later real grief sets in. A grief so powerful you feel like you are in the movie Alien and that stupid monster will push through your chest. Maybe it will and that will be it.

But no, it just pushes It is sickening. Heartbreaking. Physically painful.

You walk into her room. It smells like her. You take a dress a breathe that smell until your lungs cant hold any more. It is the very best smell in the entire world

My God. Can this be bottled?

A year goes by and you congratulate yourself on a year. But then the truth sets in. This is your life. You will forever live this life without this person. And sometimes that reality is too much.

The alien subsides but is still there....pushing at times. And sometimes you are hopelessly sad.

People wonder if you will move on.

You will never move on. You lose friends. You embrace those who allow you to ugly cry and howl like a lone wolf.

More time goes by and you still drive to work and cry for no reason. That all becomes okay because this is your new normal.

Your life is now on the outskirts. You are that person who lost a child. You choose to engage when you can but find at times that the triteness of life is sometimes too much and you need to retreat.

You will always miss.

Always.

And there is nothing anyone can do about it- nothing anyone can change.

But we need to change.

We need to change.

It sucks to lose a child.



Monday, February 12, 2018

The House that hubs Built

We moved.

You might have guessed from my last post which took me over thirty days to recover from.

But we did relocate.

In May of 2016 (yeah, like 20 months ago) Hubs texted asking where I was.


"Hey! Where are you?"

"Um. Fort Lauderdale?"

"Florida?"

"Yeah."

"Home soon?"

"5ish"

"Come look at a house."

And so I landed......from Florida and went to look at a house.....during a thunderstorm.  A house on 20 acres during a thunderstorm with lightening shinning off of its three stories. Three stories of unloved home that looked like it was occupied by the frickin' Adams family.

I drove up, parked and thought 'oh hell no.'

I walked into the house and thought 'oh double hell no.'

But then Hubs walked around the corner with tape measure and a gleam in his eye.

"You like it?" He said.

"Do you?"

The tape measure clicked shut.

CLICK!

"Yeah."

And with that he was gone. Scampered off.....tape measuring something else.

The next day we had a contract on a house I called Hogwarts.

20 months later, Hogwarts is not compete but habitable. It was taken down and rebuilt.
Rebuilt with the eye of an engineer.

Rebuilt with determination, tenacity, f-bombs, errors less than an 1/8th of an inch and a sense of ownership and love.

I am in awe of the house that Hubs built.

And is still building....just a little bit.

But here is a preview.

Stairs before:

 
 
Stairs after: 
 
 
 
 

 

Kitchen Before


Kitchen After:


Bath before

 
 
Bath After:

 



Master closet before:



After:

 
 
Alas, the new house. A new chapter. A house that needed a little love. And us.