Monday, March 31, 2014

Resiliency is not a Super Power


I recently submitted an essay on resiliency....and here it is. 

Super heroes can turn invisible on whim.

They can circle the earth and turn back time.

They can fly.

There is no super power for being resilient.  I’m not even sure what that would look like….

‘Resilient Girl, able to surmount horrible life tragedies and still find happiness in life!’

There is no super power for resiliency because it exists in all of us; the ability to choose to find some shred of good in case of extreme loss and grief, to be honest and true about our feelings but to not let those tragic experiences dictate who we are and our quest for joy.

People call me strong and I never know quite what to say. I don’t feel strong. I know what in my life makes me feel good and capable and what makes me feel sad. I try, when I am able, to embrace the good.

There are studies that say that resilient people have a brain that is wired differently in order overcome aversion. I’m not crazy about that study- I think it implies in order to be resilient; you have to have a different brain. We are all resilient; we just have to believe that we are strong enough to overcome what has been put before us. Not to forget, not to dismiss, but to find a way to find joy.

My husband and I lost our daughter Samantha, when she was four years old.

Samantha was sick. She was rushed to the hospital at 6 months old. After that time, we became frequent visitors. She was diagnosed with a cellular disease called a mitochondrial disease. Mitochondria produce the energy that enables a cell to work, thrive and pass energy to other cells. If it does not do its job properly, the brain, heart, liver, kidney and other vital organs are compromised.

Samantha was amazing. The most fulfilling thing I have ever done with my life was and will always be being her mom.

But I lost her.

The crazy thing about death is that there is no turning it around. You can’t fix it- Superman can’t race around the world backwards and fix everything. It is done.

And it leaves the rest of us to figure out how to live.

People say the loss of a child is the most-painful type of grief anyone can experience. This is not-so-fabulous news when you are in the clutches of this pain.  I did not feel sad or lost; those are emotions that can be translated into words. There were no words for the raw depth of feeling and the confusion I felt .….my emotional barometer would change from hour to hour. I was fine at 10:00 and emotionally wrecked at noon.

But I still had to figure out how to live.

It was not super human strength that got me out of bed after we lost her. It was not super human strength that forced me to take a shower. It was the fact that I was kind of stinky, the sun was out, the birds were singing and that I was more than this tragedy. Samantha was more than this tragedy. Life is short but I have to live many years without her.

And I could not live under the covers.

And so I got up.

At times I fell and did not get up for a while. But I did get up.

And this is why resiliency is not a super power; it is slow, it is deliberate, it is two steps forward and one step back. It is not circling the earth three times to fix a tragedy. It is a decision to be more than a tragedy….and sometimes it is just the need to take a shower.

When Samantha died, we started a Memorial Fund. Months later, I looked at the money collected from generous people who loved her and felt so overwhelmed.

What do we do with this?  

How can this money make a difference?

With the money, we started a non-profit that helps other children and their families living with the same Mitochondrial Disease. It is a complex, complicated disease that involves many specialists, support, and a very dedicated team. When we got our diagnosis, I asked our geneticists who I could reach out to for support, there were not a lot of options and I felt horribly alone.

With our non-profit, I hope that people don’t feel quite as alone. What is ironic is that by directing this non-profit, I don’t feel quite as alone. I had to do something. To move forward in life with nothing to honor who she was and the beauty she brought for a short time seemed so isolating. In helping our other families, I feel closer to my girl.


‘You are so strong’, people say. But I am not. I am a person, a mom, a wife, a human being who still has a lot of life to live. Besides, tights and a super cape never looked good on me. 

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