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.”
I tell her story which begins with mine.
Once upon a time I stepped into an elevator at the Art Institute of Philadelphia with a few of my fellow students.
“So, Tracy, what nonprofit do you think you’ll work with next quarter?”
“Well…I think I won’t be.”
For me, the news was the childhood dream come true. On Saturday mornings, while the rest of the family slept late, I painted two dolls’ faces with crayon and forced their coiffed hair into new -dos. Then, I dressed them in frills, and linen, and shoes. After the primp, I propped Molly and Suzie with Baby, a doll baby, against pillows set in a semicircle on the throw rug.
“Suzie, you sit here. Suzie, 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 Suzie and Annie.
“Oh, Suzie, don’t cry. Have some tea. Is that better?”
I poured water from the teapot into thimble sized cups that remained on saucers. Like rubber logs their legs protruded in front of them. My captive audience stared ahead as I opened a picture book telling the story my way. I always stopped to show then the double page illustrations. The dolls’ applause perpetually suspended in mid-air.
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, in nine months the dream would come true. My husband, Coleman, and I reread, again and again, a description of Hannah’s secret life only God knew:
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.”
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?
No, I will not tell her what I’ve noticed.
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.
Her one month checkup is next week. I’ll wait until then.
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.
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.
“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 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.
She placed a pillow over her thighs and knees, then lay Hannah upside down on it. “The lower lungs drain to the bronchial tube against gravity. It’s important she lies upside down for the persussioning of the lower six lobes.
She curved her right hand into a cup and raised her arm so we could see, “This is how you shape your hands to create a pocket of air.” She put her right hand on Hannah’s diapered torso to keep her secure.
A muffled steady beat began on Hannah’s back. “Do this for two to three minutes each lobe.”
The clap, clap, clap continued. No one spoke. Hannah’s eighteen-and-a-half inches lay still and stretched.
“I’m surprised she doesn’t cry,” I said.
The therapist finished the back and turned Hannah on her right side. I could clearly see her face.
“Is she asleep?”
“Oh, that’s not unusual. She’s used to the movement and being upside down.”
The therapist covered Hannah’s legs firmly with her right hand as her left hand percussioned the lower right side. The rhythmic beats syncopated with monitoring the vital signs of other babies in the room. The bottom positions finished she sat Hannah’s newborn body against her chest. She leaned back so the head wouldn’t slump forward unsupported. as she thumped the top front lobes.
“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,
“Someone will be in about 4 PM for her afternoon PT. I’ll see you tomorrow.”
“Thank you so much.”
We took Hannah home ten days after the diagnosis
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.
Two months later 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 seerves 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. I do not want to love my life here so much that I miss out on the wonderful things that you have placed in my box. I want to follow you, Christ. I also want to lead others to you! May the prayer of my heart be – as Christ prayed – “Bring glory to your name.” Thank you for the glory already given, and for the continuing work you want to do IN and THROUGH me! Again, I ask that anything hindering your work would die! I trust you have much bigger plans than what I could imagine. I trust the deahts 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. I rented a mobile home for sleep and spent my days by her bedside. In the first week her fever stayed at 105. The transplant team discussed putting her on an iron lung.
The lung damage required oxygen came home with her.
What was left of Hannah’s life? Not much, if life is defined by doing, which CF had methodically dismembered. 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.
It came a little closer January 4, 2005.
Hannah perched on the edge of a couch cushion sucking in air too fast to exhale.
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 an hour of physical therapy twice a week.
Fifteen months later she decided to return 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. Intubated with a feeding tube, ventilator, attached to a wound vac, she lay encased in a wall of pillows. 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-presses on every side, but not crushed; perplaexed, 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.”
Clarity for the other world for which she was made crystalized. The grueling fight with CF opened her soul and uncovered beneath broken dreams and a broken body, the presence of Eternity himself. Friday,October 13, 2006, he rescued her from CF forever.
I imagine the last hours of her life like a scene in an Olympic marathon. Hannah plods last at dusk. The official race over, she shuffles, a weary soul, unnoticed. Head bent, eyes fixed on the next step. The beeps of the cardiac monitor, the deep breaths of air from the ventilator, and the doctor’s orders are the sounds from her last spectators.
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 reverbrated 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.
Plaques with WELCOME gyrate in time to the swelling chant in the packed stadium.
She stumbles. Hands catch her on either side. Her Heavenly father and His son each sling one of her arms across their broad shoulders. Her head rests on Christ’s chest. Her feet swing free as they trot to the finish. They lower her to the ground. A roar erupts from the stands and field.
The Father keeps his arm around her shoulder and 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.
 C.S.Lewis, Mere Christianity
 Pslam 139:14-16
 Hannah’s Journal 2005
 II Cor 4:6-9