Nitty Gritty Dirty Grief

Good Day

There was nothing special about today….

Just a collection of simple goods.

Our non-profit is growing. We are reaching out to people.

Our next event has already raised $2,500.


But today I didn’t win the lottery.

I wasn’t in Mexico on the beach.

In fact today was spent at work…..But I am making my numbers. And when you work in sales, making your numbers is kinda fun.

In September I moved from the retail vertical into non-profit.

I love the non-profit sector. I really do….how great is it to represent clients who want to cure cancer?

And today when I was walking into the office, I ran into a co-worker, “Heather,” he said, “I don’t mean to be nosey but ever since you moved into non profit, you seem incredibly happy.”

It’s nice when people notice that you’re happy.

I even had to clean the house today….but something still kept me happy….I have a habit of keeping old cards on the mantle….birthday cards, Valentines Day. I was gathering old cards when I noticed a clay heart on the table with a note. I hadn’t seen this before.

I opened the note attached to the heart, it was dated 2.12.12 and said “Dear Samantha, My love to you always, wherever you are, Love Grandma”

…..this note was from Samantha’s Grandma Lyn.

And I thought of the tiny little things that happened today….our non-profit, being happy where I am, today, right now, at this moment and a sweet, dear lovely note from Samantha’s Grandma, and felt so very grateful.

Nothing dynamic, just a little collection of good.

And it made for a lovely day.

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.

Nitty Gritty Dirty Grief

Dr. Suess and Rare Disease Day

I was traveling last week and missed two very important dates; Rare Disease Day and Dr. Suess’s birthday.

I sing praises to them both!

Dr. Suess….what type of brain thinks of a Grinch, a Lorax, a world of Who’s and a Cat in the Hat…..

Samantha loved Dr. Suess. Or rather she loved her daddy reading Dr. Suess. He would raise his voice as the words got silly “I can’t stand this blither blubber! My toungue isn’t made of rubber!”

Samantha would listen and stare intently.

My personal favorite was Horton Hears a Who….a persons a person no matter how small.

As Rare Disease Day has come and gone, I think of our induvidual voices….quiet when as one but strong when united….kinda like Horton’s Who’s.

Check out the Rare Disease Day video here.

Hubby’s favorite was Horton Hatches the Egg. A story of Horton the elephant who sat on an egg through think and thin after Mazie, the lazy bird had left it. When the egg hatched, the baby was not just a bird but an elephant bird…..because Horton had sat so faithfully on that little egg.

“My goodness! My Gracious!” they shouted. “MY WORD! It’s something brand new! It’s an Elephant Bird!”

Now, those of us who deal with rare diseases might be thinking…..‘Elephant bird…..that’s some crazy, messed up DNA right there.’

But Horton’s Elephant Bird was born and exsisted out of love….like so many of our loved ones suffering with something different, a slight deviation of POLG1, or one extra or one missing chromosome; a trunk of an Elephant Bird where someone said there should have been a beak.

The special and the fragile; exsiting out of love.

It’s also on this week that our new project at Children’s Hospital has kicked off. Our contribution to the Reach out and Read program means that every child who comes into the Child Health Clinic for their Well Child check up will recieve a book.

Pretty stinkin’ cool. Who knew that these rare diseases would take us the places we are….and the places we may go….

And when you’re alone there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on.

On and on you will hike.
And you know you’ll hike far
and face up to your problems whatever they are.

You’ll get mixed up, of course,as you already know.
You’ll get mixed up with many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that Life’s a Great Balancing Act.
Just never forget to be dexterous and deft.
And never mix up your right foot with your left.

-Dr. Seuss- Oh The Places You’ll Go