Nitty Gritty Dirty Grief

Life is Life

There is an Austrian band called Opus that had a European hit……Life is Life.

I think it’s a funny song. The lyrics are simple…

Na Na Nana Na
Life is life!
Na Na Nana Na
Dadada dub dub LIFE!

I liked the lyrics because I could put anything in it….

Na Na Nana Na
Shoes are shoes!

But on long nights with Samantha, this song would pop in my head; maybe as a reminder that life is just that….life. No guarantees, no refunds, ups, downs, life is life.

There was an interesting case this week about a couple in Oregon who sued a prenatal testing company because their child was born with Down Syndrome after being tested negative for the disorder.

They won $3 million on a wrongful birth case.

Whether you agree with the couple or not is not why I’m writing this.

Had we known about Samantha’s condition in utero, I don’t know what our decision would have been.

I consider it a blessing that we didn’t know.

Because the unknown, as hard as it has been, has brought us incredible gifts and introduced us to amazing things along the way.

It changed so many of us.

And here is the thing, life is unknown. Life is a risky business. When we hear of someone in accident, we automatically say, “were they wearing a seat belt?” “Did they have a helmet?”

Did they take all of the precautions to avoid the risk?

This weekend we had our Miracle for Mito support group meeting. Six years ago I had no idea what mitochondrial disease was, nor was a really concerned. I was newly married, starting a family….

This weekend I sat in a ball pool with our mito kids while the parents were in a pull-out group; learning about new treatments.

During the support group, my dad walked into the play gym to find a nurse holding Jacob, our lovely music therapist singing to a little girl with mitochondrial disease and me, trying to adjust sunglass on a little boy so the light didn’t give him seizures.

He laughed as a little girl danced around him to ‘Mary had a Little Lamb’.

“This is good,” he said, “this is important.”

And I looked around as to where life had taken me….crazy, unexpected life….unplanned, genetically challenging life.

And I was glad I never knew results to a test…..I was glad didn’t know where life could take me.

PS… lovely friend Jenny has a great perspective on this issue. You can find her here.

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