Tuesday, June 25, 2013

My new hat

A couple weeks ago I found myself at the United Mitochondrial Conference. 

It just so happened to be in Newport Beach, CA so I thought I needed a little beach time. 

Kinda….

I had reservations about attending this conference.

I would learn about new discoveries in Mito research for why?

I would sit in sessions about children with mito issues for what?

I did not need to be in this world as a parent and if I couldn't be there as a parent, I didn't know how I could be there.  

But, alas some of my favorite people where going. I hate to miss anything, ever. And I really felt the need to figure out who I was in this Mitochondrial World. 

And so…..to California. 

Our MFM president, Maria was brave enough to share a room with me. On the way to our room, we passed through the exhibition hall. I viewed testing companies, supplements, hospitals, everything I didn't need and ironically, missed so much. 

And so I cried in the exhibition hall.  

And Maria hugged me. 

She's a good roommate. 

And so the weekend progressed, with sessions, with acronyms I didn't understand and genome sequencing....yeah....try me with genome sequencing.

Here is the Mayo Clinic, collecting blood for the Mito Biobank....for that genome sequencing 
 This is Elvis (seriously) who took my blood for the mayo clinic



And something amazing happened that weekend.....

I found my new hat (no, not Elvis' hat, although I was tempted).  

It is not a hat of a mito parent, it is not a hat of a bereaved parent, nor a hat of an advocate....it's a combination of it all.....a fedora-sombrero-beret with a touch of cowboy. 

What I found is that what we are doing makes a difference. 

I noticed this when I ran into the founder and CEO of Oroboros Instruments, Erich Gnaiger. He was wearing the Oroboros logo on a t-shirt.

 
*This is the Dragon logo. Dr. Erich Gnaiger is on the left. 


“hey!” I said, after some wine. “We bought your machine!”  

“Ja?”  he said because he is Austrian….and so I, of course answered him in my not so fluent German.

“Naturlich!” (I know, you’re impressed, aren’t you?)

Anyway, to make a long story shorter, he knew who we were. He knew about our Dr., Dr. VanHove….who had gone to Austria and trained with Dr. Erich Gnaiger and our fabulous machine, named Sam.

As the conference went on, word spread about the work we had done and the money we had raised for our Mito cause. I spoke extensively with Johnston Grier, who is putting the database for Mitochondrial Research (NAMDC) together…yeah, our donations are sponsoring Children’s Colorado participation.

I went from crying because I didn’t know where I fit to crying because we fit in so many places.

Friday night, I sat with our Mito families over the fire pit. We talked about losing our children, the fear of losing our children, and the absolute magic of our children.

Me and the President


And I thought…..here we are….I represent what these families fear most and they represent what I miss most. And there were no sad faces, just an understanding of what we are all going through. So I took off my fedora-sombrero-beret with a touch of cowboy because I didn’t have to wear a hat, I could be me  in search of what is next.


When we left, founder and CEO of Oroboros Instruments, Dr. Erich Gnaiger gave me a kiss on both cheeks....yeah, because we bonded...because he’s Austrian and they kiss on both cheeks and because I can speak in my broken German. 

Naturlich! 

And I left feeling full….still unsure of my role on this path but knowing that this path is good, important, worthy and hatless. 

3 comments:

Areli Rose's Disease said...

I loved this. And as a family YOU have helped i can tell you your role and involvement have impacted our lives tremendously. And there is no way i can thank you (or Maria) enough for what you have done and created for us and the mito community. So wear (or take off) whatever hat you want, because you deserve to. You are changing lives!

P.S. Currently I think I am wearing a hard hat, with a bit of red lipstick, red lipstick fixes everything ;)

-Linnea

Unknown said...

Oh Heather, what brave, profound explorations. Your presence and commitment to the unknown is so important, so powerful. Cathy

Anonymous said...

Hi Heather, I am thinking of both of you today, July 25th. Sending lots of light and wishes for a peaceful day, Laura B, Sam's music therapist