Getty Owl Foundation

D-Day (Diagnosis Day)

Another July is coming to a close. It’s a special time to reflect and give thanks.

In the SMA community, four days a year never pass without significance: birthdays, diagnosis days, angel days, and SMA candle lighting days (the second Saturday in August).

Getty was diagnosed with Spinal Muscular Atrophy at the end of July 2010.

Her age: 4 months.

Her prognosis: She will not live to see her second birthday

Recommended action: Take her home and love her; there is nothing you can do

Reaction: Devastation

Knowing absolutely nothing about SMA at the time, we feared her that her passing away in up to 2 years might mean as little as 2 WEEKS. We made a pact to keep her smiling for as long as she is with us. In whatever time she has, she should know nothing but love and happiness, and she will have lived a good life.

Through the SMA community, we learned more about SMA than any other source and turned the tables on the “experts.” What was supposed to be maybe two weeks or maybe two years has become five glorious years. True to our pact, Getty thrives today and keeps on smiling. Her life is full of love and happiness every day.

(OK… She is sometimes unhappy when she doesn’t want to take a nap or when someone turns her music off, but hey, she’s a kid. What do you expect?)

With our loving help, Getty attends school, travels, feeds horses, swings at the playground, goes to the forest and beaches, learns her letters and numbers, drives her own power wheelchair, soaks in pools and hot tubs, listens to music, goes to the ballet, attends plays, watches movies at the theater, and spends plenty of fun time with family and friends.

No, it’s not easy. In fact, it’s downright exhausting…. But it is oh so worth it to see her smile with joy, meet her loving eyes, and hear her hoot and holler with delight.

On the original D-day, our dreams were crushed, but through her love, strength, and contentment, she has inspired us to find richer love, deeper strength, and refined contentment in ways we never dreamed possible. We enjoy sharing that with others in the hopes they get to know us and Getty a little better and perhaps find some of Getty’s magic within themselves.

It’s been an amazing five years. Wow!

We never expected to be here with her. What do we do now?

She — we — will just keep on smiling.

There is a song that has always resonated with our family. Natalie Merchant recorded a song called Wonder. Here are the lyrics and we hope you can see why we interpret it to fit our little lady and all kids with SMA. Hope you enjoy the video. 🙂

Doctors have come from distant cities, just to see me
Stand over my bed, disbelieving what they’re seeing

They say I must be one of the wonders
Of God’s own creation
And as far as they see, they can offer
No explanation

Newspapers ask intimate questions, want confessions
They reach into my head to steal, the glory of my story

They say I must be one of the wonders
Of God’s own creation
And as far as they see, they can offer
No explanation

Ooo, I believe, fate smiled
And destiny laughed as you came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She’ll make her way, she’ll make her way

People see me I’m a challenge to your balance
I’m over your heads how I confound you
And astound you
To know I must be one of the wonders
God’s own creation
And as far as they see, they can offer
Me no explanation

Ooo, I believe, fate smiled
And destiny laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way, she’ll make her way
She’ll make her way, she’ll make her way