Tuesday, June 28, 2016

Primal Howler Monkey



I have 50,000 emails in my google account.

You can judge. I am comfortable in my email hoarding.

I have 50,000 emails because they go back to when Samantha was born. They tell a sacred journey and I'm so afraid I will somehow delete a nugget of loveliness from my past. I filter through those emails every once in a while and find little gems. This week I found one from my dear friend Maria from 2009: 
Maria Hopfgarten 
9/11/09
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to me

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Hi Heather,My name is Maria Hopfgarten, and I came across your blog as I read your article in the PASCO newsletter. I LOVE your blog, and your story so reminds me of my journey with my son Jacob. I also love that you bike! I don’t get out on the road, but I do use my spinning bike in the basement for mental strength:-Jacob is 3,5 years old, and has an unspecified mitochondrial disorder. I can see from your blog that Dr. E is also following your little girl. We don’t know what we would do without her.My son is in the hospital tonight again with a bacterial infection of some sort (waiting for the 48 hours blood culture), the 3rd admission in 4 weeks. We feel Children’s is our second home.You can read my son’s story at: www.caringbridge.org/visit/jacobhallbergIf you camp out at Children’s, let me know, and maybe we can meet for a coffee one day?


Take care, and good luck to you and your little girl Samantha

I had no idea how this person would change my life. I had no idea how we would push and pull each other through heartbreaking times. 

I had no idea that a year later we would be without Samantha.

It is hard to be friends with grieving Heather. I can be moody, unresponsive and silently judgmental. But I cherish those who have stuck with me. 

Maria stuck with me. Together we formed Miracles for Mito and she is the amazing president of our organization.

Two Saturdays ago, Maria's Jacob decided it was time to go. 

I hate this disease.

And I hate that I know the journey. It’s like sitting with someone who is watching Silence of the Lambs for the first time and it’s my 78th time and I know what is coming up but I can’t warn them because it’s so awful and so unreal I can’t put it into words.

“Cover your eyes. No really, this part is pretty gruesome.”


I was at a Mitochondrial Conference presenting on Grief and Resiliency when we lost Jacob.

I’m not great at this concept of Resiliency this ability to withstand shock without permanent deformation or rupture (Websters).  I know I have been ruptured. 

I do not accept the learnings from my tragedy; I covet the tiny cheeks of others healthy babies, I use the ‘F’ word….often, I cry in a good Cabernet, and the fact that we’ve lost so many makes me so…..angry.  

According to Psychology Today; resilient people do not covet. 


Our fabulous Dr. E played the violin at Jacob’s service. She came over, gave me a hug and we cried together and then we hugged again, and cried some more. I didn’t want to let her go. Ever. She smelled of a lovely past….

Which I covet. 

When we lost Jack, a dear friend sent me the song ‘Grieve’ by Peter Gabriel.

It starts off as one of the saddest songs in the entire universe. I listened to it, laying in the middle of the living room floor thinking What the F*ck?? Thank God she also sent copious bars of chocolate; which I consumed in between my hiccup cries….

But this sad, sad song, turns more upbeat after a minute and focuses on the one thing we know true….

That life carries on.

It’s just the car that we ride in
A home we reside in
The face that we hide in
The way we are tied in
And life carries on and on and on and on
Life carries on and on and on

I rode my bike on Sunday with this song in my head, Jacob and his Mama on my brain and climbed to the words……

The face that we hide in
The way we are tied in

On and on and on and on.

To my friend- howl at the moon, howl unabashedly, channel your inner Primal Howler Monkey, nothing has to be civilized; not right now. Know you are truly, deeply fiercely loved. Know that six years into my journey, I still covet the life we had in the email above.

Sigh, so very, very unresilient. 


And know Sugar, if on those days where you don’t have anything to say to this world, come sit by me and we will howl together. 

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