Samsmom: Life, Joy, Loss and Loving your Mitochondria

What’s your role?


It has been a frightening, tiring week for our Mito Families. As they have worried about liver function, seizures and fevers in the hospital, my concern this evening has been: will I have to sit in the middle seat on a four hour flight from Boston?

I do hate the middle seat.

I hate seizures and fevers more.

I am now in seat 17 E.

In prepping for my Boston meeting, we asked each other what is our role in the meeting? And we went around the table defining our purpose.

I will bring up the issue of the contract.

I will secure pricing

I will close the online project

We all have a role. A reason for coming to the table. A reason for making the trip

As the parent of a medically fragile child, you have a role, many times you have several roles at once; I am nurse, I am advocate, driver, bather, nutritionist, seizure monitor, interpreter of my child’s illness…..I am Mom.

You wake up in the morning with an undeniable sense of purpose. That sense of purpose carries you through the hardest decisions, the longest nights, the bitter battles with medical teams.

This week as one mito kid after another went into the hospital with frightening symptoms, I found myself searching for my purpose; I am obsessive facebook checker, I am rambling message leaver, worrier, pray-er, meal leaver.

And I would be lying if I said I wouldn’t trade positions with any of my poor, worried, sleep deprived hospital moms. I would. I would in a New York minute.

But that is no longer my role.

So I had to have a heart-to-heart with myself this week. I had it when I made pans of chicken enchiladas for our inpatient families; I had it again when I delivered lunch, and yet again when I checked facebook for the 20th time on my phone.

You can walk away from this, Myself said to Me.

It wouldn’t matter, I said. I would still search for my place, role. I would still worry about our mito families. But I wouldn’t have my community by my side; this crazy, passionate, med-givin’, suctioning, mama-bear, big girl-pants wearing community. And I love that community.

Last Friday, I did a quick stop-in to Robert and his Mama and Daddy. It was at that time, when changing a poopy pillow, when I realized that I feel closest to her when I am helping this community that Samantha created.

Poopy pillows tend to bring moments of clarity to me.

In our meeting today, our agenda was thrown out the window by the client and instead of talking about contracts and pricing, we had a three hour discussion about strategy. It was a fantastic meeting.

And roles we so carefully defined were null and void.

Tonight, as I cozy up in the middle seat, tenderly swaddled between two strangers, I realize my role is to someday come to peace with my lack of a role; Manager of Heather’s Harmony. The job description is vague as I feel it is forever evolving. There are however, several ‘action items’ effective immediately with this new role:

– Do not covet the life of your friends when they are in the ICU with their sick child. It will do no one any good

– Love and cherish the tiny family of you and your husband. This is sacred space

– Remember what she taught you and use it to make a difference- no matter how small that difference is

– Cherish and honor Samantha’s memory. This too is sacred space

– Eat chocolate and enjoy a glass of wine if you have to sit in the middle space

Undeniable sense of purpose.