Monday, February 13, 2017

Heartbreak Beat

"I was called the Death Doula once by a friend," my friend Robin told me on a hike this weekend.

I laughed out loud.

Maria, Robin and I hiked Fern Canyon. Our first meeting of SOOTHE. A group born of Mamas who have lost Littles.  

Sisters Out of Tragic Heartbreaking Experiences.....SOOTHE...it's catchy, right?

I like to think of it as a grief group born out of people who hate grief groups. It was a lovely, honest hiking day.

This week has been a week. I have tried to put emotion into a box that I can file.

But it doesn't seem to fit. My files are legal size and my box is letter and I struggle to put it all into something I can fit underneath my desk.

Maybe it shouldn't fit.

It all started last week with a friends brother-in-law who suddenly died. He was my age and loved the Smiths and Kate Bush. The last time I saw him was at my friends' amazing wedding which was ages ago. I love my friends. They loved their brother ardently. I joined them to celebrate his life.

You know what happens after you go to a memorial service?

You are so stinkin' nice.

I found myself that night at Home Depot after the service looking for a gallon of DefBlue for my diesel. The poor Home Depot Lady had to get on the ladder that you strap into and has a lift to go up to the third tier on the Home Depot shelf.....like 30 feet in the air.

And I said a little prayer.

"Please God, do not let the Home Depot Lady fall while getting my gallon of DefBlue. I just listened to Meat is Murder with a hint of Psychedelic Furs and I am in my good, sad place. Just let me be."

You are depressed but you're remarkably dressed

Alas. I thanked my Home Depot Lady. Got my diesel exhaust cleaning fluid and remarked on how busy a Home Depot is on a Saturday Night.

Everyone needs lumber tonight.

A night when my friend's family is saying a final goodbye.

"I am human and I need to be loved. Just like everybody else does."

Life is ironically trivial at times.

The night before we found out Hubs cousin died after coming up from a scuba diving expedition in Florida.

I really liked my cuz-in-law. He had a handlebar mustache, wore three piece suits and was incredibly engaging. 

I am sad he is no longer here.

To make it a trifecta, a high school friend died on Friday. I liked my friend. She was kind, tenacious, and she loved her daughter with a mama bear heart. I knew her least out of many who loved her fiercely but I know the world was better with her in it. I know what her Loves face the next couple months and I hate it.

When I write, I usually listen to classical music so words do not distract me. Tonight I call upon my post punk, gothic, new wave, teen angst.

That seems to make more sense than anything 'adulty'.

Shoplifters of the World Tonight and Take Over.....Don't You Forget About Me and I'm feeling Pretty in Pink

......God Damn it...... I don't want to be a Death Doula.

Where the F*CK is my Joy Division?

I'm too young for this shit.




Sunday, January 22, 2017

Dragons

Social Media seems madder than a dragon trying to blow out his birthday candles.
 
You get it? Because he breathes fire? So the candles never go out? The only thing that would make that dragon more mad was if that cake was an ice cream cake.

I love ice cream cake.

I should take a break from social media because I'm that friend that takes everything one...little....step further and ends up poking that dragon.

I find it endearing. I also find it miraculous that I still have my friend on social media. You're good people.

I marched yesterday. I don't need to. We don't have living children. We both have good jobs. We have insurance. The market is on the up and up. I can just put my head down and plow through the next four years.

But sometimes in this life, I feel amazingly vulnerable and I can't imagine how those who live their lives constantly in this state must feel right now.

I had to find an new OB-GYN this month. I hate going to the lady doctor so I have not gone to the lady doctor for five years. I hit 46 this month and decided it was time. Filling out the paperwork made me hyperventilate a little.

How many times have you been pregnant?

List the dates of those pregnancies

How many living children?

Ugh. I drove to the office, paperwork in hand and thought about how vulnerable I felt; on the fringe of society with two babies who are not with us. I dreaded sad looks, telling my history while wearing a gown that ties in the front.

I walked into a quiet office with a poster of the seven dwarfs of menopause.

In case you are wondering, they are Itchy, Bitchy, Sweaty, Bloated, Sleepy, Forgetful and Psycho. I met with an empathetic doctor who listened to my history, ordered a new IUD, blood work and gave me a hug.

You now have to wait five weeks for an IUD. Insurance processes the request, calls you to make sure you're legit and sends you your very own. Apparently, my IUD is a coveted apparatus.

"Does it come monogrammed with my name?" I asked the doc.

"You should ask Cigna. I'm sure they would monogram it" She said.

I handed over my insurance card. I wanted to kiss it. For many, this visit is not as smooth, nor does their IUD come monogrammed.

This week I also had a mammogram because you know, 46. I drove to Rocky Mtn Medical. Samantha was their very first air lift ten years ago. I blew the helipad a kiss.

"All of our mammograms are now 3d. Your insurance doesn't always cover this. Call us if you get a bill and we will take care of it." The woman who checked me in said.

And once again, as the tech contorted the girls, I felt grateful.....

Okay, felt is not the operative word. I FELT really uncomfortable. I WAS, however grateful.

Four weeks ago I went down to the Denver Rescue Mission to deliver coats, socks and money that my company raised during our Turkey Trot.

I had a bucketful of socks and $456. The weekend before had been bitter cold and the man receiving donations had tears in his eyes.

"$456 wow, we weren't planning on this. Ma'am, thank you so much. This will help so much. It's been cold, and it's the holidays and people are just so sad. Thank you."

He took my hand and held it tightly.

"God Bless." He said.

And I cried.

And so I walked yesterday. Because why should I be so lucky? To have my healthcare, to have a roof, and access to good food? To be loved and supported by my family, friends and community? The very least I can do is to insure that others can have socks and an uncomfortable 3D mammogram as well.



Monday, December 5, 2016

Colorado Gives Day- Give Where You Live

When Samantha died we raised $8,000 from her Memorial Fund.

$8,000 is a lot of money.

And it could have gone a lot of places; Children's Colorado, the UMDF, MitoAction.....but nothing resonated.

I wanted to make this $8,000 count. Really count. Like Superman stopping the earthquake count.

I wanted to make this Memorial Fund money as impactful as Samantha.

And whatever materialized from this fund, I wanted to keep this money in Colorado.

Because when you are sick, when you are searching for your tribe, it's good to know you have something in your backyard.

Many times I was told how great the Mito clinic in Cleveland is.

And you know what? It is great. It is an awesome clinic. But if you are sick or your kiddo is sick, sometimes Cleveland might as well be on the moon.

Colorado Gives is not just about us: it's about all of the other services our state provides from the Mental Health Center of Denver, to Animal House, to Rocky Mountain Food Bank.....the care and compassion generated here is pretty stinkin' awesome.

So tomorrow if you have an extra 10 spot in your chinos, pass it onto your favorite local nonprofit.

Give local.

Because if you are ever looking for help.....it never helps to hear "well you know, they have a great center for this in Albany."

Thank you awesome tribe. You can donate to your favorite Mito Cause here:

https://www.coloradogives.org/miraclesformito

Friday, November 11, 2016

Happy Veterans Day

I spent three years in Germany during my twenties.

It was one of the most memorable times of my life. I was a civilian working for the military at an Armed Forces Recreational Center.

I served those who served.

Really I taught the Littles of those who served how to ski, which wasn't a bad gig in the German Alps.

In the summer I found random jobs; lifeguard, pizza delivery and one summer at the German-American Golf Course.

I worked in one of the most beautiful places on 

Image result for garmisch germanyearth

It was also 1994, 50 years since World War II  and the impact of what happened here two generations ago was palpable.

The golf course sold American candy which was crazy because we lived in the land of the very best chocolate and we were trying to pawn off Twix Bars and Reese's Pieces. A Germany man would come in often and buy ten Hersey bars at a time.

I asked why the Hersey Bars.

"You have the very best chocolate! Right here! What's so special about a Hersey Bar?"

He told me that the Americans came through Garmisch on April 29, 1945.

He was six.

"I was so hungry. We didn't have anything left to eat. The soldiers arrived and they gave the children Hersey bars. They were the very best thing I ever ate. Nothing in the world tastes as good as a Hersey Bar."

He carefully unwrapped the chocolate and gave me a piece. I closed my eyes and tried to taste what he tasted.

I could not

I have never been that hungry. I have never been that scared. I have not had my world turned upside down at age six. 

As he ate I piece, he smiled and nodded his head; perhaps thoughts of hope, gratitude, memories of a six year old belly that felt a little less empty.

I felt so honored. Honored that this man shared this sacred memory and his sacred chocolate. Honored that he remembered the day 49 years ago not with tanks and strange men but with soldiers who share chocolate. And I felt honored that these brave men, my fellow Americans made this small boy feel so much better.

Happy Veterans Day.  


Sunday, November 6, 2016

Angry Brain

Earlier this week I felt I had been wronged.

Wronged!

And it made me angry.

Angry!

And I played scenarios in my head. And I rethought conversations. And I sat. I sat in my anger.

And it made me dumb.

I am not joking.

On Tuesday I was at work with my anger.

I went into the kitchen to get my yogurt.

And I walked back to my desk with a spoon- no yogurt, which was in the refrigerator NEXT to the spoons. No yogurt just a lonely spoon.

And so I went back into the kitchen to get my yogurt.

And returned with a napkin which I sat under the spoon that both waited for the yogurt.

At this point I started laughing and realized how this issue had taken over my brain.

My anger made me dumb.

No one should go into the kitchen three times for yogurt- no matter how tasty it is.

I finally sat at my desk and peeled back the top foil of the container. The caption on the cover had a statement on top.

BEST DAY EVER- it said.

Enough. I told myself.

Enough.

Enough being angry. Not that I didn't mind being angry. I felt justified in my anger! Righteous in my anger! But my anger was taking too much space. My angry brain was consuming my yogurt brain. My yogurt brain was just hungry.

I looked at the foil that read BEST DAY EVER and I told myself to be mindful to make this day my BEST DAY EVER.

I licked the blueberry remnants off the foil and stuck the reminder on my cubbie wall.

Yes. Yes, there is a slobbery blueberry yogurt foil stating BEST DAY EVER pinned to my wall now. You call it gross, I call it fung shui.

It was not my best day ever but it was better. Much better that I decided not to let the anger take up so much space.

This anger had nothing to do with the election but it made me think of our politics and how we are two days from Tuesday and that some people are so, so mad. And you know what? You are probably justified in your anger, you are righteous in your anger.... 

But don't let it take up your good parts.

Do this for you, do this for yourself....don't let your angry brain take over. Trust me. I walked a mile to get my yogurt.


Sunday, October 23, 2016

When a Pregnancy doesn't turn out- please note- tough read

The history of my last ten years have placed me on the fringes of normal society.

Sometimes I embrace living on the peripheral.

Other times I hate it.

Most often I try to blend; which means biting my tongue, smiling politely and trying to think of a vague response when asked at a cocktail party how many children I have.

Sometimes I reach my point and have to use my voice.

Today is one of those days.

I can't get words from Wednesday's debate out of my head.

The descriptive 'rip the baby out of the womb at nine months' out of my head. And sadly, the repeated posts on facebook continue to haunt me.

I should unfriend, I should hide,  but thoughts about our own experience are eating my brain so, I will write.

Our son died in utero at 9 months. I remember the doctor searching for a heartbeat and clearing out the ultrasound room to confirm our worst thoughts.

I was given the choice of having a C-section or birthing a baby I would never hear cry.

I opt'd for the C-section. "Please just knock my out," I said

The doctor looked at me sadly, "We can do that but it's major surgery. You will have to stay in the hospital for at least 3 days to recover and it would be six months before we would recommend getting pregnant again. Your body will heal faster with a natural birth"

So, I was induced and waited through the night to have my son.

There was no ripping. Ripping would have been an easier choice.

All babies are born in the maternity ward- no matter the outcome. We heard lullabies played over the speakers when another child was born. My husband had to walk by congratulatory families in the hallway as he went to get a cup of coffee.

We left 24 hours later; greeted by a nursery that would not see a baby and a recommendation for a funeral home. My milk came in the next day and I sat in the shower and cried.

The only thing that was violently ripped out that day was my heart.

"But Heather," you say, "You did not abort your baby. Your situation was different."

And if you still hold onto that argument, you missed the point. This is how babies come into the world no matter the outcome, at nine months.

No one would choose to go through this because they want to.....because they 'changed their mind' about having a baby. When something goes wrong this late in a pregnancy, it goes very, very wrong.

So Stop- please stop using verbiage that sounds easy, dramatic, evil. The ones you are hurting are the ones who are already hurting.

Thursday, September 22, 2016

Show Up

It is Mitochondrial Awareness Week. 

And you know I and I know you.....are aware of your mitochondria every single day. 

It's tough to give insight just on this week.....so I thought, what about those who need a little insight? 

What would I tell someone whose loved one, whose friend, was new to this mitochondrial journey?"

So here is my top 5- please note, the collective 'we' is just my opinion on the mitochondrial community, the community may disagree at will :) No harm, no foul.

Anyway, Top 5: 

1. Show Up: 

Know that we might not show up back. 

Please don't take this personally, we are in the midst of a health crisis and we might not ever, ever acknowledge that you showed up but we know, and we remember. And we love that you showed up. 

When Jack died, A neighbor whom I had never met showed up with a chicken, a delicious roasted chicken. She cried as she dropped it off. I don't know her name but I will remember her sweet face forever. 

She showed up. 

Ring the bell and know that we might be home but just cant answer....perhaps because our child is seizing, or projectile pooping on the wall five feet away, or maybe they are doing none of these things but we just got two minutes of peace and have fallen asleep. 

Show Up

2. Show up with a good story: 

You are 30 minutes late to the hospital. Traffic was awful, your boss is pissed and you had a fight with your son. 

Leave it. Before you enter our hospital room (or house)  take a deep breath and know that whatever horrific crapiness happened today, it was probably better than what we went through. 

One of the very best hospital visits was by a friend who dropped off a meal and told us how he had fallen completely in love. It was awesome- there was not a problem in the world! 

Such great energy after a crappy day. Find a good story, dig deep if you have to but find something good to tell. 

**Caveat....if it is a great story about your healthy kiddo and you are going to visit a mito kiddo...save that story for later....maybe tell a story about a beautiful butterfly you saw in the atrium, even if you didn't....little white lies are awesome. 

3. Know that we will Change: 

Of course we will change! Everyone changes. And change is not always bad. The circumstances that brought us to this change are bad.....but respect the person we have had to become. 

That person is awesome, and tough as nails, and strong as hell and lippy.....respect is the operative word. 

4. Do Not Be Afraid: 

Okay, that one is kind of stupid, Because of course you are afraid. We are all afraid. 

Anyone dealing with mito is scared shitless. But don't be afraid of the person- the person is lovely and vulnerable and maybe just wants their feet rubbed. 

The very best people were the ones who just embraced Samantha for her smoochiness.....lines, oxygen, seizures and all. 

A friend and I once gave a very stinky Samantha a bath in the hospital. She was so sick and so stinky. And the way we worked to clear lines, tubes and wires was beautiful, all to bathe my child.....

I will remember that moment forever- just like the delicious chicken. 

5. Let us Cry, or Laugh, or be Horribly Inappropriate: 

We really do know that rectal Valium is outside the realms of what is polite dinner conversation. 

We know that when we have to explain to the nurse that the stain on hospital sheet is not really blood but Cabernet; that there might be issues. 

We tell you these stories not so that you feel bad or take pity on our life but because this is our life. Our amazing, terrifying life. A life we would have never, ever chosen but a life that the more we embrace, the more beautiful and scared it becomes. 

We know Mitochondrial Awareness week is overwhelming. Even the name Mitochondrial......sounds so formal. And the fact that there is no cure or therapeutic treatment makes the word Mitochondrial absolutely terrifying. 

A lot of friends will jump this crazy ship and I can't say I blame them but, in the words of some unknown author, 

"The World is Run by Those Who Show Up." 

I love that this quote is about showing up but we don't know who to credit the showing up to.....

Maybe that's the point about showing up, no one has to remember that you were there but you know, in your heart you know and that made a difference.

Show up. 









Monday, September 19, 2016

Our Most Vulnerable

Yesterday kicked off Mitochondrial Awareness week. 

I am a day behind in making you aware of the importance of your mitochondria. 

But if you know me and you know my blog, you know that mitochondrial function is pretty darn important. 

Love your mitochondria. 

Seriously, right now....take that thigh in your hand, give it a little wiggle and say "I love you little mitochondria, yes I do, yes I do, yes I do." 

Because sometimes you don't know what you got until it's gone. 

When we lose something, we feel so vulnerable. 

We feel it in the simple little things, where did I put my phone? Did I leave my wallet at the restaurant? 

And those suffering from this disease feel it in the ginormous things, I can no longer feel my feet, my baby cannot make eye contact, what the freakin hell has happened to our life? 

It is hard to be vulnerable. 

On Saturday, I volunteered at our Community Food Bank. I did it as a favor and grumbled through the day until I showed up to help serve the Saturday meal. 

If you have never done this, you should. It's kind of awesome. You are there to do the most primal of gracious acts.....to FEED someone a MEAL. 

At 2:20 we started pulling out desserts, cupcakes and cookies from Krogers and Safeway that had expired. At one point an entire birthday cake was pulled from the freezer and sliced up. 

Meals on Wheels brought spaghetti and meat sauce for 50 at 2:30. Food was served at 3:00; so we started to heat things up. 

At 2:40, there was a knock on the door....a door which I happened to answer. 

"Can I come in?" 

I didn't know.....it was 2:40 and we don't start until 3:00....so I asked someone else...

"Can he come in?" I asked

"We serve at 3:00." 

"I'm sorry," I said, "We serve at 3:00." 

"I just want to sit. They usually let me come in and sit." 

Oh for pity's sake! 

"Yes, please.....please come in and sit." 

And so this man came in. 

And sat. 

And then got himself a big stinkin bear claw. 

As people filed in, some collected loaves of bread for later. Some coveted several desserts. One man went into the bread pantry and got a whole loaf of Safeway buttered garlic bread, sat at a table and shared slices with his friends. 

I have always wanted to dive head first into a loaf of Safeway buttered garlic bread.

I was a tad envious. 

We fed 65 people on Saturday. Not bad for our little town of  Loveland. Some were crazy gracious. Some wondered where the Parmesan was....how the hell can you serve spaghetti without Parmesan???  

I have no idea

Some seemed in good shape, others not so much. 

Some came, ate and left, others stayed, roamed from table to table with a cup of coffee and a piece of leftover birthday cake. 

We ran out of spaghetti, had to reheat the meatloaf and finally onto the chicken ala king. 

 note; get to the community kitchen before the chicken ala king. I beg of you

The kitchen also gives out snack packs to those who ask. One man asked for a snack pack, "But make sure the drink is Capri Sun, none of that Kool-Aid Crap." 

I wholeheartedly agree

It sucks to be an outlier in our society. We talk tolerance, we talk diversity but to live as an outlier can be horrifically isolating; whether you are homeless, impoverished, disabled.....it's not so fun to be on the bad end of the bell curve.

So on this week of mitochondrial awareness, I ask you to give us a seat at the table, let us in early, listen to our stories and feed us a bear claw.  We are a community shouting to be heard: grieving, under represented, searching desperately for a voice and so amazingly beautiful 

And in the words of the fabulous Berne' Brown....what makes you vulnerable makes you beautiful 

I leave you all a Kroger pastry and a world void of chicken ala king.