The Hannah Pratt Legacy

We love a story that begins with Once upon a time and ends with and they lived happily ever after. Heroes vindicate the persecuted, rescue the weak, and triumph over evil. Adversity shapes character and strength. My daughter’s story is all that. She now lives in a place best described by C.S.Lewis:

“If I find in myself a desire which no experience in this world can satisfy,
the most probable explanation is that I was made for another world.”[1}

Once upon a time I stepped into an elevator at the Art Institute of Philadelphia with a few of my fellow students. We were entering our final quarter in a few weeks, but my husband and I had other plans.

“So, Tracy, what nonprofit do you think you’ll work with next quarter?”

“Well…I think I won’t be.”

“What?”

“I’m pregnant!”

For me, the news was a childhood dream come true. As young as five, on Saturday mornings, while the rest of the family slept, I painted Annie’s’s and Suzie’s faces with crayons and would force their coiffed hair into new -dos. After the primp, I dressed them in frills and shoes. Then I propped the two dolls against pillows set in a semicircle on the throw rug where life-sized Baby waited.

“Suzie, you sit here. Annie, sit there. Oh, no! No-no. Baby! Don’t crawl away. Come back. Ewww, do you need a diaper change?”

I picked up Baby, patted her back, then set her down again with the others.

“Suzie, don’t cry. Have some tea.”

I poured water from the teapot into thimble sized cups that remained on saucers.

“Is that better?”

Like rubber logs their legs protruded in front of them. The dolls’ applause perpetually suspended in mid-air. My captive audience stared ahead with tea cups untouched. I opened a picture book and told my rendition of of the double full-page illustrations.

The dream of motherhood never went away. In adolescence, mothers entrusted me with their babies and children for a night or weekend. I worked summers with children in camps and clubs during college. The longing was sown in my heart like the perpetual green of an endless summer.

Now the dream would come true. My husband, Coleman, and I reread a description of Hannah’s secret life only God knew in those nine months:

For you created my inmost being; you knit me together in my mother’s womb.

I am fearfully and wonderfully made. Your works are wonderful, I know that full well.

My frame was not hidden from you when I was made in the secret place;

When I was formed in the depths of the earth, your eyes saw my unformed body.

All the days ordained for me are written down in your book before one of them came to be.”[2]

We prayed, “May this child be knitted together in such a way his or her life leads others to you. Thank you, all his or her days are interwoven in your story.”

God, the designer, and sculptor of life shaped her in my womb with death and eternity in view. We trusted his artistry and goodness implicitly. His trustworthy character undergirded our relationship from the first time we met. We chose Proverbs 3:5-6 as our compass for life together:

“Trust in the LORD with all your heart and lean not on your own understanding;

In all your ways acknowledge him and he will direct your path.”

We never imagined the call to trust would take us to her deathbed twenty-five years later.

Jan 23, 1982, eight months after my announcement in the elevator, Hannah was born. I was drenched with happiness like summer grass sopping with dew on an August day. A nurse whisked my daughter away to wash and wrap her in a receiving blanket. Another wheeled me into recovery. Once in my hospital room, I lived for our reunion. Back propped against three pillows, my eyes flitted to the doorway at each sound of a cart. My arms lay open on my lap, waiting.

Finally, squeaky wheels stopped in the doorway. The nurse wheeled a bassinet into the room. I sat straighter, leaned forward, arms outstretched. She transferred my daughter from her arms to mine. I settled back cradling her securely to my heart.

Ah, here she is. My Hannah.

My lips brushed a kiss on her forehead and trickled six words into her ear.

“I love you, Hannah Michelle Pratt.”

Her warmth blazed a deep satisfaction through me. Yes! This is how things should be! My eyes closed, my head bent in thanksgiving.

We left the hospital three days later with our skinny yellow little one.

“Now don’t you worry about her size and color. Newborns are often jaundice,” her pediatrician said, “Her red blood cell count is a little low. That causes the color. She should pink up.  We’ll check the count at her one-month appointment.”

We went home eager to get into a routine with our daughter. Three weeks later, jaundice had not disappeared. My mother-in-law changed Hannah’s diaper for the umpteenth time that day.

“Something is wrong with this baby.”

“No! Nothing is wrong with her. Absolutely not,” I said.

Please God, don’t let it be. Please, let it be paranoia.

            Fear squeezed my heart.  I had noticed something odd since bringing her home. Thick eyelids covered her eyes keeping their color secret. The day before they shone sky blue. Today they hid under her puffy jaundiced skin. Was that normal for a newborn?

            My mother-in-law’s observation heightened my attention to detail.  How often did she eat? How often did I change her diaper? I knew breastfed babies pooped a lot, but was this normal? Were her eyelids puffy after a nap? Before? Perhaps these peculiarities were unique to Hannah and not signs of abnormal behavior.

Hope loosened the grip in my chest — for a moment.

One month and two hospitals later an answer to our waiting, wondering, praying was minutes away. Hannah’s day nurse informed us a doctor (we weren’t sure of his name), who was a specialist (we were unclear what kind), and his team would be in sometime around 10. The large wall clock in the ICU nursery ticked. Ticked…ticked to 9. Then 10.

Silence hung between us. Our hearts ached in unison.

We hoped this specialist had answers.

He did.

The final and definitive test showed she had cystic fibrosis (CF), a genetic disease. Genetic? How could that be? Neither Coleman nor I had any history nor symptoms we saw in Hannah, or what he or his team told us would be coming in the future.

We expected solutions.

He didn’t.

“The life expectancy is between nine and twelve years old, but the daily regime of care and going to scheduled follow-ups with CF clinic can give Hannah life far beyond that.”

Fear clutched our hearts. They cried in unison, “This is not good.”

For nine months we had prayed as God formed Hannah in secret. We trusted him implicitly.

He answered explicitly.

My heart beat with the pace of a lioness guarding her endangered cub.

The fight with CF began that afternoon.

The physical therapist showed us the thirty-minute percussion therapy (PT) we would do twice a day every day to keep Hannah’s lungs clear of sticky mucus when she was healthy.

“Make sure you do two minutes in each position when she wakes up, and at bedtime. This is keep mucus from building up in her lungs. If she starts getting a cold or teething, percussion three to four times a day. We want to avoid pneumonia, which can become the common cold for someone with CF.”

Pneumonia? Coleman exchanged glances.

“The more infections,” she switched hands. Clap.Clap.Clap. “the more scarring occurs and the airways become permanently blocked.”

Our eyes locked. We watched while she leaned Hannh’s chest forward in the crook of her left arm to pillow the head on her hand. I envied Hannah’s innocence.

Finished, the hands that percussioned, cradled and carried her 5 lb 6 oz body. Left hand under her the back of her head. Right hand under her torso. Lowered into the crib. It’s side locked. Hannah slipped onto her stomach into a fetal pose, oblivion unbroken,

We took Hannah home ten days after the diagnosis. [3]

Life with CF intertwined Hannah’s a quick wit, musicality, and quiet strength. Family vacations. Fine art competitions. Sewing with Grandma. Youth retreats. Mission trips. Music lessons. Schoolwork. Piano practice. And sleepovers. Alongside chest PT, aerosal treatments, and home IV’s.

Hannah’s childhood dreams included college, becoming a pediatric nurse, and marriage. By nine she knew she couldn’t be a pediatric nurse. Too many germs. She turned her sights to a music career. She started piano lessons at seven with the goal in mind to play the flute and piccolo in the future. By her sixteenth birthday she hardly had the wind to play either. They sat in their cases, silent witnesses to another broken dream. That summer she was diagnosed with CF induced diabetes.

May 2000. Hannah graduated from high school. In the fall she began the college dream.  Her will manuevered long hours of piano practice, music memorization, auditions, recitals, papers with her daily regime and increasing hospital stays. The life of a music major whittled her strength away.

June 2001. Hannah came home from her allergist, sobbing. The day’s allergy tests indicated we must find a home for Spanky, our cat, and Natty, our dog. The two animals contributed comic relief and daily delight in Hannah’s routine. She grieved as she planned to plow ahead with another semester of school.

August 2001. Hannah had another checkup with her pulmonologist and another trip home with heartbreaking news. She needed a double lung transplant.

December 2002 she was listed.

The wait began.

She passed the halfway mark in her college dream in May of 2003. With a diploma from the community college, she turned to the university to finish what now seemed like a marathon. Her will pushed her to finish. That month she read John 12:23-28

“I tell you the truth, unless a kernel of wheat fall to the ground and die,

it remains a single seed. But if it dies, it produces many seeds. The man

who loves his life will lose it, while the man who hates his life in this

world will keep it for eternal life. Whoever serves me must follow me,

and where I am my servant will also be. My father will honor the one who serves me.”

She wrote in her journal: What is it in my life that must die? What must be sacrificed to produce new life in others? Lord, please show me… Thank you for the glory already given, and for the continuing work you want to do IN and THROUGH me! … I trust the deaths that may occur are for your purposes. I do not understand, but I know I must commit to trust.

This time it was Hannah who implicitly trusted. God once again explicitly directed. He did not intervene in CF’s natural course.

October 2003. She fought a lung infection for a month at Shands Hospital. Her studies had to be suspended while she recovered.  

What was left of Hannah’s life? Not much, if life is defined by doing. CF had methodically dismembered hers. Something more valuable surfaced. A man in his 70’s asked her what would she suggest he do about a possible cornea transplant. Should he do it?

She threw back her head and laughed, “Well, I know my outcome without the transplant. My decision to be listed requires I trust God.”

The other world for which she was made seemed clearly in view.

January 4, 2005. It came closer.

Hannah perched on the edge of a couch cushion sucking in air too fast to exhale.

“I…can’t…breathe.”

A helicopter transported her from Orlando to Shands where she was admitted to MICU. She faced the possibility of death and signed a DNR and living will. God in his mercy and grace brought her out of the distress. This time she did not return home when she was discharged a month later. She and I moved into transplant housing across the street from the hospital. No school, no social life, and no job intertwined with her daily regime and physical therapy twice a week.

Fifteen months later returned home to wait for transplant. Her regime didn’t change except for carefully planned socializing that included a weekly small group for spiritual encouragement. She was home five months when the transplant dream came true.

Six days before Hannah had confided to the group leaders, “I do not believe it is in my best interest for God to miraculously heal me. It is here that I must trust.”

The next forty-four days her life slipped away in a myriad of complications. At twenty-four, she was as helpless as when she was one month old. She lay encased in a wall of pillows intubated with a feeding tube,  ventilator, attached to a wound vac. Steriods, drugs, and fluid made writing impossible. Her knowledge of sign language, and mine, made communication possible. A week before she died she signed to me, Struck down, but not destroyed.

She referred to a passage of scripture I frequently repeated to her in those days of helplessness.

“We are hard-pressed on every side, but not crushed; perplexed, but not in despair;

persecuted, but not abandoned; struck down, but not destroyed. We always carry around

in our body the death of Christ. so that the life of Christ may also be revealed in the body.”[4]

Clarity crystalized for the other world for which she was made. The grueling fight with CF opened her soul and uncovered the presence of Eternity, Himself, beneath broken dreams in a broken body. 

Friday,October 13, 2006, he rescued her from CF forever.

I imagine the last minutes of her life like a scene in an Olympic marathon. Hannah plods last at dusk. She shuffles, a weary but determined soul. Head bent, her eyes fixate on the next step. The beeps of the cardiac monitor, the deep breaths of the ventilator, and the team fighting to save her are the last spectators along the road.

The voice of her Coach pushes her from within, “Courage, Hannah. Courage. I am with you.”

She enters the tunnel leading into the stadium. Its walls reverberate with a new sound.

She lifts her head. A crowd of specialty guests edged the track at center field; Grandpa Russell, great-grandparents and her biblical heroes, Ruth and David, among them.

WELCOME plaques gyrate in time to the swelling chant in the packed stadium.

“Hannah! Hannah!”

She stumbles. Hands catch her on either side. Her grandmothers’s each link an arm under hers. Her head lifts. They step back and point. She breaks into a run with the speed of a gazelle. Laughing and cryings she falls into the arms of the Heavenly Father and Christ Jesus. A roar erupts from the stands and field.

The Father whispers, “You courageously trusted, my love. You trusted me when the nightmare was darkest. Welcome home, beloved, to the world for which I made you.”

And she lives happily ever after.

[1] C.S.Lewis, Mere Christianity

[2] Psalm 139:14-16

[3] excerpt from Anticipatory Grief: Finding Hope While Expecting Loss

[4] Hannah’s Journal 2005

[5] II Cor 4:6-9