Sunday, September 14, 2014

My Love Will Find You - Families with Bicuspid Aortic Valve

This is for everyone who loves someone with Bicuspid Aortic Valve or any form of aortic disease in the chest.

Derek Owens' parents were told about his BAV at birth
He was 16 when he first had surgery

This is especially for Mothers. Mothers of all ages.  Right from the start, they know how special, how talented their child is. At some point, they may learn there is something not quite right inside the heart of their beautiful child. They agonize through the doctor visits, the surgeries. Some Mothers hear those most dreadful words. Their beloved child is gone. Rest assured, there is nothing you could have done to prevent a bicuspid aortic valve. Above all, you give your child what no physician ever can. You give them your love. It is the most wonderful treatment in the world, and you can increase the dose at any time without harm. Yes, it is the greatest healer there is. Your love. Unlimited. Always.

Following are the words of a childrens' book by Nancy Tillman. The pictures are from BAV families.

Wherever You Are, My Love Will Find You

By Nancy Tillman

I wanted you more
 than you ever will know,
 so I sent love to follow
 wherever you go.

It's high as you wish it. It’s quick as an elf.
You'll never outgrow it... 

it stretches itself!

So climb any mountain...

BJ Sanders at Machu Pich
climb up to the sky!

My love will find you.

BJ's dear Mother, who lovingly
follows her daughter's adventures
My love can fly!
BJ celebrating her birthday in 2014. She had surgery a year earlier.

Make a big splash! Go out on a limb!

My love will find you. My love can swim!

Scott Nichols (in blue) was lost to aortic dissection, January 2014

It never gets lost, never fades, never ends...

if you're working...

or playing...

or sitting with friends.

You can dance 'til you're dizzy...
paint 'til you're blue...

There's no place, not one,
that my love can't find you.

Derek Owens has always loved basketball!

And if someday you're lonely,

or someday you're sad,

or strike out at baseball,

or think you've been bad...

just lift up your face, 

Derek in high school
feel the wind in your hair.

Derek Owens and his Mom, Laura
That's me, my sweet baby, my love is right there.

Chuck Doherty lost his life in April 2012
 due to BAV complications

In the green of the grass... in the smell of the sea...

in the clouds floating by... at the top of a tree...

in the sound crickets make at the end of the day...
“You are loved. You are loved. You are loved,” they all say.

Carrie Mettler running a half marathon
Carrie Mettler's beloved Mother, who knew the reality of
having two daughters with BAV
My love is so high, and so wide and
 so deep, it's always right there, even
 when you're asleep.

So hold your head high
 and don't be afraid
Bob Gies following his surgery in 2010.
to march to the front
 of your own parade.

Doug Grieshop on his wedding day 

Doug Grieshop at 2 months
If you're still my small babe
 or you're all grown,

my promise to you
 is you're never alone.

Doug had an undiagnosed BAV. He lost his life to aortic aneurysm
 rupture 10 years ago, on September 20, 2004.

You are my angel, my darling,
 my star... 

and my love will find you

wherever you are.

You are loved.

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