54 year old Joel Westbrook lives with adult onset Mitochondrial Disease. I am grateful for his words and his willingness to be a Lodgepole Pine.

Here is Joel’s post from our MFM site.

Thank you Joel.

I am a bit of an adrenaline junkie. 

Not super over the top but I tend to rush into things that make me feel good, make my heart beat fast, make me feel like I am alive. 

But the biggest rush I get? 

Raising money for our charity, Miracles for Mito. 

I KNOW……how super cheesy is that? 

Super, duper cheese with a side of cheddar. But I love it. I love it more than a crystal, clear, knee deep powder day….(for those non-skiers, this is a deep snow day. I wasn’t going to post that but if you  didn’t know ski jargon, that comment might seem odd….but I digress, as usual)

Nothing makes me feel more alive, nothing makes me feel like in this crazy world, with our craptastic circumstances, that some good can come from something. 

Last week, we had our Miles for Mito Run/Walk at my company. I am blessed to work at a great place with great people. 120 people came out to raise money for our non-profit. 

We ran, walked, raised money, ate ice cream and enjoyed a lovely spring day. 

At the start line: 

It has been a busy evening.

I have unfriended two people on Facebook.

TWO! I am out of control.

I have somehow managed to acquire 503 friends. People who put up with my silliness, my rantings, my crazy thoughts, liberal, non-profit antics and blog posts.

And I thank you for that. I know I am not perfect nor am I always right….as much as I would like to think I am.  

I did the math (even though I was an English major) and to unfriend 2 people out of 503 leaves me with an ‘unfriend’ average of .3%.

I’m okay with .3%. Think about it. If you had a gathering and only .3% of your invitees were inappropriate, you would think that was a successful gathering!

And I do find my .3% a success.

We have quite a lot to process in our world today. Which leads to a lot of opinions and a lot of voices. 

I do think just because we have a voice, a keyboard and opposing thumbs, we should not always use them. 

One of tonight’s unfriending compared abortion to Newtown….that we are so outraged about Newtown but still have legalized abortion.

I did not lose a child in Newtown.

But I have lost two children who were very wanted, anticipated and loved.

I have never had an abortion….thank goodness.

But I thought how dare this person? How dare this person take a political agenda based on a tragedy? I thought how I would feel as a Newtown parent to read this comparison.

And so I unfriended. And that was okay.

And I thought, maybe

Just maybe…

We should save political agendas based on tragedies to those and only those who have gone through that tragedy. In return, I will never give you advice on how to parent your teenager.

To mind our manners before we post something.

We never know the absolute, mind-shattering impact until we walk a mile or perhaps run a marathon, in someone else’s shoes.

.3%…..only .3% but they are so very noisy.

It has been a whopper of a week. Boston has rocked our world, wondering if there is ever a safe place.

And our Senators have rejected further background checks for gun ownership.
I am not against people owning guns. But I do think if I need a credit check for a credit card, a background check for a job and a drivers license for Sudafed, I should need a back ground check for a gun.

Have you ever shot a gun?  My liberal toting tushie has and I must say, that gun holds a lot of power.

And Boston….who has shown us that you do not need a gun to cause unfathomable damage.

So complex. So much emotion.

Everyday I get up and I go to work.
But I love my job. And I love what I do on the side. I work with non-profits, I manage a non-profit and it is times like this that I am reminded of the importance of good.

Doing is good is good. It is good for society but almost selfishly, it reminds us that the bad will not over ride what the good is doing. It cannot, we are better than that.

Along that theme, here is our 2013 Courage Classic Video- reminding us of the good we can do:

https://www.youtube.com/watch?v=OcDo6NY8ros

So whatcha gonna do? To feed your soul? To remind yourself that so many of us want to do good. And to spread the good, the hope and the love. We are so much better than what makes the news.

Whatcha gonna do?

Have you seen Facebook today? It is exploding with this flag:

I traveled to D.C this week. 24 hours before leaving I was diagnosed with a sinus infection.

There is nothing worse than flying with a sinus infection.

Except maybe a Zombie Apocalypse….which I’ll get to.

After said diagnosis, I explained to my doctor that I was flying the next day and the last time I flew with a sinus infection, I blew a blood vessel in my nose…without any Kleenex on hand and wearing a white shirt….yeah, I was that person you love to sit next to on the plane.

So she gave me a list of things I needed to be taking to fly with said infection. And I loaded myself up, and headed for the airport…..all sinusy and everything.

What is the point of a sinus? Don’t they just sound like they would be problematic? We have toes, fingers, noses and then the sinus….it just sounds like it would be an issue. SINUS

Not only was I sinusy but Super Storm Saturn was headed that direction too with the promise of dumping multiple feet of snow before the day was done.

No client is worth this.

But I boarded the plane, because I love an adventure. And my manager promised me sushi. And I love sushi as much as I love an adventure, maybe more.

“Take Sudafed before the plane takes off.” The doctor advised. Do you know that now in order to buy Sudafed, you have to fill out a form promising that you won’t turn it into meth? I had to show my id and everything. But I digress.

I plopped into the middle seat at 6:45 in the morning and quickly realized I forgot to take my pre-flight Sudafed. So I pulled it out, along with my mucinex, my antibiotics, ricola cough drops and a wad of Kleenex.

Try it sometime and see the reaction you get from your seat mates. It’s kind of funny.

The woman in the row ahead of me was talking to her daughter, “Well, say a little prayer for us. Everything is shutdown, it’s supposed to be pretty bad out there.”

Lovely, I thought, as I blew my nose. We are heading into the eye of the storm.

4 hours later we landed in the heart of Super Storm Saturn territory. I had prepared myself for the worst; feets of snow, polar bears and woolly mammoths.

It was raining.

Well, maybe it’s really icy. I thought.

Nah. It was cold, and wet but nothing worthy of a name like Saturn.

D.C had closed the Federal Government in anticipation of the storm. Do you know what happens in our Nation’s Capital when the government is closed?

Nothing. Really, the entire city was vacant. I jay-walked on M street without looking both ways. Restaurants were closed, people went home early. We found an open Starbucks with a disgruntled barista.

“You know what this is like,” I said to my manager while sipping my latte’ in the rain. “This is what it would be like if we had a Zombie Apocalypse; big cities totally deserted, a slight drizzle and a gray day. Seriously, I expect them to come up from the subway anytime now.”

My manager, who is quite used to me and my random thoughts nodded and offered me a snickerdoodle. “Zombie apocalypse?”

“And really,” I said. “Super Storm Saturn? This storm is not worthy of a planetary name. This is more like Super Storm Bob. Wow, that Snickerdoodle is really good.”

The best thing about being in D.C. during Super Storm Bob is going out for sushi because no one else is going out for sushi. We were the only one at SEI. And they gave us complimentary champagne. Maybe because they were bored or they felt bad that we were out with an impending Zombie Apocalypse; either way it was fabulous.

Today we visited our clients. It was a beautiful day in DC. The Government was open and I could no longer jaywalk on M street. Things were back to normal. When explaining to my clients how empty the city was, I stated with excitement; “The streets were empty! It was like a Zombie Apocalypse!”

To which they tilted their head, nodded slightly and were kinda quiet.

Some days it surprises me that my company lets me interact with their paying customers.

Because you might.

You know one of those posts where your rational brain says, “maybe you shouldn’t go there.”

But that other brain says, “I can’t get this off my mind?”

This is one of those posts.

Hubby and I wake up every morning to NPR. This usually means I am processing conversations between Dennis Rodman and Kim Jong Un in a dream-like, semi comatose state.

Sometimes it’s easier to take the news this way. The other day, as I hit the snooze button again, I heard about an 87 year old woman being denied CPR in her retirement home.  She collapsed on the way to lunch and stopped breathing. It was against the independent living facility to administer CPR. So the nurse did not. And the 87 year old woman died. 

I slowly woke up and listened to the news.

As move on with the lifelong process of dealing with my own grief, I have become intrigued with how we deal with death as a society and I have to say….in my humble opinion…..

It’s a tad messed up.

Here’s my thought. If I’m 87 years old and I’m going to lunch and my heart gives out, I fall to the floor and stop breathing? Please don’t try and resuscitate me. At this point in time I am old.  I hope I have lived a life I am proud of. I hope I know who you are. I hope I can make it to the bathroom on my own.

I don’t mean to be flippant about these things….this is what I really do hope. Given that I now pee a bit when I sneeze, the bathroom thing might be far fetched………I can live with some things.

Please don’t give me CPR at 87. Currently at 42? Sure fight like hell for me. At 87? Nah. I only have a 5-10% chance of survival and my recovery would never be the same. I don’t want to be hooked up to some machine At most, I might have had a couple more years. At 87, I think I would be good with moving on.

Please don’t say things like my daughter must be heartless and cold for being okay that the nurse didn’t do CPR. You do not know me, you do not know my daughter. Well in my case, you do know my daughter, you know where she must be and that I am thrilled to follow her.

I find it ironic that young people die in horrible situations everyday, situations that could have been prevented and this is our focus. Is it because it sheds a light on our own vulnerability as we age? That people won’t do all they can do for us as we age? And when is it relevant to do everything? Or to not? 

When is it okay to die?

Perhaps I am missing something. Either way, the story makes me sad…..sad for the family, the nurse, and anyone in contact with this story. Maybe it will start a dialogue about when it’s okay and not okay to move on and let a life be a life. 

Because I just sneezed. 

Hubby was viewing my blog the other day.

“All of your posts are about death,” he said.

“That is not true. Remember the election? That post wasn’t about death…it was political.”

“Death and politics,” he said.

Hmmmmm.

So I told myself my next post would not be about death. We even went to a Who concert and I wrote a great blog about how air guitar is not an acceptable form of dancing…..because it is not.

And then it happened…..

The world lost a great, great man.

This man…….

Bomber….

A truly Magnificent Character….

For those who don’t know, I spent a part of my 20’s in the German Alps; a place called Garmisch Partenkirchen…..Garmisch for short…because it’s hard to pronounce Partenkirchen after several Hefeweizen.

Seriously, I lived here……pretty cool, huh? Don’t ask my how my German is…..noch ein bier bitte? That’s about it

Garmisch was a collection of American backpackers, American Soldiers, college grads looking for the next best thing and people who went by the names like Shred……..Kinky……and Bomber.

I knew about Bomber before I met him. He was a legend, a consummate traveler who would work the summer months in Garmisch and travel during the winter. He had been doing this for years with his lovely, beautiful travel companion, Goldie.

Bomber and Goldie……I am not making this up.

Everyone knew Bomber and Bomber knew …. everyone. Not only did he know everyone, he engaged with everyone. He would take a group of young Garmishers to Pamplona every summer to run with the bulls.

I never ran with the bulls. I’m more of a jogger, I trip easily and bulls scare me.

But maybe I should have. 

Bomber made you want to run with the bulls, live life out of a backpack, experience this magnificent earth and the amazing people who we share it with.

Bomber traveled.

And Bomber took pictures.

Amazing pictures that captured the beauty around us everyday and the beauty thousands of miles away. I remember watching one of his slide shows; he didn’t say a word (which was rare), he played music to the photos and we watched as the wonders of the world, through his eye, unfolded before us.

He encouraged us all to travel, to see this great world, to test our limits….he was an ambassador for life.

A couple years ago he lost his love, his beautiful Goldie- it was unexpected and entirely too soon.

I hadn’t seen Bomber for years but would follow his posts on Facebook and it seemed from thousands of miles away, that his heart was broken.

Of course it was.

A couple months ago Bomber was diagnosed with a terminal cancer that had ravaged his body. It was incredibly hard for us Garmischers who were losing a legend.

But I also know that those us who have lost a Love do not fear death. I would like to think that Bomber looked at this as the next great journey and more importantly, a reunion with his lovely Goldie.

On Sunday, the world lost Bomber, our great ambassador for life.

And we cry. And we remember a great man. We share our stories and our photos.

And he is still bringing our world together. Our community of Garmischers have reunited, posted memories and photos of a time when we ran with bulls, saw the pyramids in Egypt, hiked the Zugspitze.

And shared pictures like this:

Oh good Lord!

I’m in the corner, on the left….no grey hair, thank you! Bomber is in the yellow up top.

Of course he is.

In this life, we meet many people every day. It is those who encourage us to be more than we thought we could be, who encompass a joy for the beauty that can be seen out of the ordinary…those people are our precious guides to this world. 

It is always tragic when we lose one. 

Thank you Bomber- to your next great journey.

Well, happy Sunday, huh?

A couple months ago, I volunteered to speak at an Ethics conference about Do Not Attempt to Resuscitate (DNAR) standards in terminally ill children.

My conversations this last week went somewhat like this….

“Heather, what are you doing on Friday?”

“Well I’ll tell ya, I’m speaking about do not resuscitate standards in terminally ill children.”

I would get one of two responses. The first would be a shudder the second would be a comment such as…..”Well, that sounds about as much fun as swimming in quicksand with a nest of angry rattlesnakes.” 

And then I would say, “Are they angry because they are in quicksand or just because they are rattlesnakes?” It was about that time that I would loose my audience….because there is no joking about rattlesnakes when taking about a DNAR on terminally ill children.

And they are right, there is no joking.

But there should be talking.

Because a very large population that we serve has thought of or had to deal with the worst thought possible….will my child die from this disease?
 
or when will my child die from this disease?

All you need is a couple trips to the ICU and this does become a very really possibility. And the last thing these families need is for the rest of us to shy away from the very real possibility they are living with everyday.

So on Friday, at the Children’s Hospital Ethics Conference, we did not shy away from this conversation. We talked about it openly with Doctors, Nurses and Parents; talked about when these conversations should be had and the importance of a medical community being open with families.

Our own lovely Maria Hopfgarten talked about our Jacob and the conversations they have had about end of life care.

At 12:30, I was scheduled to speak at Grand Rounds about what could happen if a terminally ill child died at home without legal documents such as a CPR Directive or DNAR. This would be the first time I talked publicly about the last day with our girl.

I didn’t eat lunch, because I felt like I would loose it. Instead, I walked outside, looked up at the sky and asked Samantha for help, if it is so important to talk to these doctors and parents, I need you here.

And I felt that she had landed on my shoulder.

And I felt better.

I talked openly about our investigation with the Sheriff’s office despite Samantha’s numerous and life-threatening conditions because we did not have legal documents in place.

Because we did not feel like she was in a life-threatening place.

Until she was.

I spoke for ten minutes which felt like the equivalent of a marathon. The remainder of Grand Rounds was about getting these documents in place and the changes that have been made at Children’s because of our experience with the Sheriff’s office. When we ended, my knees could not stop shaking and I needed a nap.

But ironically, I could not stop smiling. Our girl, as always was changing lives and making an impact. And as always, it’s when I’m doing this work, that I feel so close to her.

Thank you Children’s for having these hard conversations.