About the LegacyThe Hannah Pratt Legacy is inspired by a prayer Hannah Michelle Pratt wrote in her journal in 2003 just months after she was listed for a double lung transplant. She was born with the genetic disease cystic fibrosis, which affected her life from birth. The legacy is created to honor her faith and passions shaped and deepened by her journey with cystic fibrosis.
It became a part of their evening routine that year. He was two and she was five. There was no plan – no schedule – it just happened. One or the other would start the chase; he begging or she teasing, “i’m going to get you…I’m going to get you!”
The fun could start anywhere on the path that lay from his room at the end of the hall, through the hall, around the living and dining area, and back again – back and forth, around and around. He ran with head thrown back, giggles spewing, and legs chugging. She tempered her speed so he was just out of reach.
Their laughter was melody; their chase rhythm. Their routine mingled with mine in the kitchen: pots clanged, dishes clattered, silverware clinked, and water swooshed. But then, their ritual would draw me away into the joy of their normal day. Her hand would creep closer and closer until she caught his. Then they would dance the finale.
Last December my niece, Hannah, who has Cystic Fibrosis, became very ill and had to be life-flighted to Shands Hospital in Gainesville.
After a few hours there, the Doctor asked to speak to Coleman, my brother and Hannah’s father. The doctor told us that Hannah was in danger of going into respiratory distress, which meant for a CF patient that her lungs would be no longer usable. The doctor said that if that happened, the only way to save Hannah was to put her on a respirator. But, if that happened, and she had to stay on it for longer than 3 days, that would cause changes in Hannah’s respiratory system that would mean she would have to be removed from the transplant list, which is her only hope for long term survival.
The doctor needed to know what we wanted to do if Hannah went into respiratory distress.
When we went back into her room, Hannah knew that something was going on, and she wanted to talk.
My brother sat down on her bed, and told her that she might need a respirator to breathe. But, that if she needed it for longer than 3 days, she would be taken off of the transplant list.
And he told her that the doctor needed to know what to do, so Hannah had to decide now.
Hannah leaned over, her head bowed down,
trying to think….
trying to breathe…23 years old, and having to decide that.
Then, Coleman leaned closer,
till their heads almost touched,
And he said,
“Can I tell you what I think?”
Then their heads touched, forehead to forehead.
And Coleman said,
“Hannah, I think you should go on the respirator if you need it….
and we will pray and hope that the lungs come…
And then, if they don’t come in 3 days,
then, Hannah, I think…
we should remove the respirator….
I don’t want to hold you here like that…
and keep you from the arms of Jesus.”
Hannah was still for a moment.
And then, do you know what she did?
She nodded again.
“Yes” she nodded.
She looked death right in the eye,
she saw its red eyes,
and yellow teeth,
she and my brother
stared it down,
And then she said “Yes!”
Yes! To trying to live…
Yes! To having to die….
to that brave and strong Savior
Who meets us in every Good Friday…
in every death…..
To be with us
and walk with us
on through that valley.
And beloved, from that dark night…..
when death was sent running for cover from that room!….
to this very day,
Hannah has gotten better….
as she waits for those lungs.
Why? What happened?
I think it is because, in that moment,
when she went forehead to forehead with her father,
DEATH DID ALL IT COULD DO TO HANNAH!!!!!!!
She let go.
She sunk into the abyss…
and she found there…
she found it to be true there…
what the Apostle knew:
That whether we live…
or whether we die….
we are the Lord’s.
And, when you finally know that,
then what is there to be afraid of?
What is there to stop you
from living life with all you’ve got?
I am asking you, Beloved,
on this Easter morning,
What is there to stop us from living life
with all we’ve got?!
Easter sermon 2005 by Hannah’s uncle, Gwin Pratt
Its been four physical winters since Hannah died. A few months after she died I went to a writers’ conference. There were three of us whose children had died; the other two mothers had already birthed pieces that celebrated their children’s lives. But I was a tree the size of a sapling, whose offshoot never was healthy enough to entirely flourish on its own roots. Such a beautiful offshoot, whose branches dipped and swayed with the wind, whose leaves laughed. Her seed quietly matured and shook free, though disease steadily sapped her life, until it finally ceased.
My roots shudder uncertain of purpose; they search deep as the cold winter facilates between low relentless storm clouds and brilliant windy blue. This season is bitterly cold. The seed lies unpertubed beneath the decaying trunk; life incubates within their shell. My roots drink of the deep warmth and my sapling sized branches reach for heaven. They are not dead. The seed is not dead. We wait for the kiss of spring.
always the last day of the week; normally a day to catch up on housework, grocery shopping; normally a convenient day to get married. Last Saturday a childhood friend of my daughter’s got married – a normal part of life for a young woman. But, Hannah’s absence was abnormal on this normally exhilarating day. If she had lived she would have been right in the middle of all that happiness.
Every morning the atmosphere shakes off the night
the same way it did the day before.
Every morning the sun rises.
I have never been bored by a sunrise.
Clouds normally show up during a day –
puffy miniatures skid by like bumper cars –
thunderclouds bully their way between the earth and sun –
sheets of white decorate a bright blue ceiling.
Then it is time for the sun to ends its work for the day.
It normally slips over the horizon
spalshing mixes of blue, red, and yellow into the atmosphere.
Such normal behavior is worth interrupting my normal day.
your voice and with us sing.
Oh, praise Him! Oh, praise Him!
Alleluia! Alleluia! Alleluia!
Words by St. Francis of Assissi 1225
Pictures copyrighted by Leni 2006
waiting for transplant at home
waiting for transplant in transplant housing
the transplant journey that lasted forty-four days
The third book begins where the last leg of our daughter’s lifelong marathon with cystic fibrosis ends. Her brother, her father, and I miss her terribly.
We are four amputated to three.