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

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