This beautiful poem is by Mattie Stepanik, the young man who died at the age of 13 from a rare genetic disease. Before his death in 2004 he had published seven volumes of poetry and was called “the most extraordinary person I have ever met” by President Jimmy Carter.  Mattie began speaking poetry at the age of three and inspired many, despite tremendous personal family tragedy: three older siblings died of the same genetic disease when he was very young.  His poetry would be deeply moving and significant even without his story, but knowing his tremendous insight and courage it is astonishing. ❤️

I wanted to live
To be
One hundred and one
Years old.
But that is no
Longer my goal.
When I die,
I die.

I cannot predict.
I cannot control.
I cannot change
What is to be,
Which is what it is
And will be
What it will be.
I wanted to live
To be,
And not die.

While I’m alive,
I live
To the fullest.
I treasure each sunrise.
I remember each sunset.
I dance every dance and
I sing every song and
I celebrate every moment.
I wanted to live
To be.

I am spending my time
On earth before death
Rather than dying,
And not wasting a moment
Of the precious gifts
Of time and
Of life and
Of being, for now.

Thank you to Phyllis Cole Dai for curating this wonderful poetry site

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